Scared for me and my family... help please [Archive]

daddyof2

07-31-2007, 09:04 PM

Hello all, and this is my first post to the forum and I apologize for its length. I hope that you can help guide me through what I beginning to fear may become a reality. Any feedback on this lengthy post would be most appreciated. I am 40 years old.

About 18 months ago I began to notice that both my legs felt week. I first noticed it when pedaling a three wheeled bicycle with my 2 y/o daughter and my then pregnant wife. I chalked it up to being out of shape. In looking back, at about the same time, I noticed my hands were a bit weak and a little achy, and things like ripping up junk mail was tougher than it used to be. I chalked it up to getting old. Both continued to be mildly annoying, but I did not think much of it.

About 12 months ago, I started noticing that my legs would get tingly and numb if I sat on the toilet for more than 5 minutes or so, and that my arms would go numb if I slept on them. Once again, I thought that I must be getting old.

About 3 months ago I was bending down to pick up a beach towel after waterskiing a bit, and fell over in agony. It turns out that I had major back spasms for the first time in my life. After several trips to the chiropractor, xrays and lower back MRI, to identify some mild disc degeneration, I have fully recovered by stretching everyday. (not sure if related, but my theory is that I was using my back to overcompensate for my weak legs)

Over the last 2 months or so, my leg numbness and weakness has gotten much more pronounced (almost constant), and has also included my arms now. I can barely hold my one year old daughter for more than 3 minutes without my bicep muscle becoming agonizingly painful. I also am achy all over (especially the shoulders and forearms) and have started to notice twitchings all over my body. They are not constant, but happen fairly often throughout the day.

I went to my GP two weeks ago and had all the typical blood work done which came back negative. I then went to the nuerologist yesterday and he did an initial evaluation. From what I can tell, I had no gait abnormalities, could stand on my toes and heels and walk fine, and he seemed OK with my other movements (I think). The one thing he mentioned to me were my "brisk reflexes", which I beleive are a symptom of ALS.

His preliminary diagnosis is that I definetely "have some illness". His best guess is Peripheral Polyneuropathy, however he is also considering Myostis and Myopothy, but did not seem to think that these were the cause. When I asked him about the possibility of ALS, he looked up from his notes and indicated that yes, this is something that we should be concerned about given my symptoms. I am scheduled for the neuro-tests next Friday.

In thinking (i.e. worrying myself sick) about this the last 24 hours, looking at my daughters and candidly crying a couple of times, I realize that my leg weakness is really more in my upper legs and my arm weakness is really in my upper arms (biceps primarily) while my numbness is in my lower legs and arms. I ache in my shoulders and both of my arms, but there is little pain in my legs. I do notice that my balance is off a bit and little things take more concentration for me to do. I can do them, but I now have to think about them more- i.e. turning on a light switch while walking. Not sure if this matters or not.

So, I guess my questions are these:

- Thoughts on my symptoms being ALS?
- Does my story sound similar to anyone's experience here?
- What are the neuro-tests going to be looking for to make an ALS diagnosis vs something else like Peripheral Polyneuropathy?
- Any advice on how to cope....

Thanks VERY much for anyone's help as I am REALLY scared right now.

Ray

Peg B

07-31-2007, 10:03 PM

Hi Ray,

I see that i am the only one on the forum right now, but others will be on and they can give you much more information. I will tell you the tests you will likely get are EMG and Nerver Conduction Tests. I didn't think they hurt much but they are like a lot of pin pricks. Every so ofter one was stronger than the others but all were tolerable. One of the people on the forum will tell you good websites that explain what to expect in these procedures. This is a good place for information and support. I found it helpful to read many of the threads and look up information on the internet too. My neurologist told me I had ALS, and sent me for a second opinion which said maybe Multifocal Motor Neuropathy (MMN) and there are many other diseases not as scary as ALS. But most of all enjoy your daughters and try not to worry. Friday will be here soon enough and worry will not change the results. I just wanted to welcome you and wish you peace. Sincerely, Peg

CindyM

08-01-2007, 05:30 AM

Hi Ray, welcome to the forum. I want to second what Peg has to say. This is one of the scariest times-the uncertainity can eat away at you if you let it. One ray of hope is that on occasion the local neurologists predict things that the ALS clinic may not be so ready to confirm. But it is good that you are thinking of ways to cope because some people test and re-test for months before their ALS clinic can confirm or dispute the suspicions.

The best advice I got is to plan for the worst, hope for the best, and live for today. Regards, Cindy

daddyof2

08-01-2007, 06:46 PM

Thanks ladies, I really appreciate the support. I am doing what I can to not get too upset, and to enjoy my family as much as I can. The timing is good and bad in that my wife and I have a 5 day trip to Cabo planned from tomorrow thru Tues of next week. The earliest the neuro-tests could be done was next Friday anyway. I am not sure if the down time will be relaxing or just give me the oppty to focus on the prospect of ALS.

Even some of the "less scary" things that this might be, appear to have the potential to significantly alter my quality of life forever. I have yet to find any sort of Neurological problem that can be dealt with easily and then the patient just goes on with their lives.

I find it so hard to try and put this out of my mind when I am constantly (literally) experiencing a symptom of whatever this is. Whether it be my weak legs, muscle twitches, aches in my upper body, odd sensitivity to water temperature, or tingling/electrical feelings throughout my body- its just so hard.

Any other thoughts or experiences would be really helpful. Thanks again.

Ray

CindyM

08-01-2007, 07:28 PM

Hi Ray- last summer I was traveling around the country in great heat and much discomfort. My symptoms were new to me and my Docs were talking in dire terms. At one point my hubby called me to say one of my local neuros had called the house personally to see how I was doing, and he told my family he was "very worried" about me. Not exactly conducive to enjoying a trip or two!

I honestly don't know how I managed. Even now, when I look at photos of those trips, I am amazed to see what looks like a heathy woman having a good time. Funny thing, while I was trying not to worry about my very life, my traveling companions were focused on things like lost luggage or taking a short trip in an un-airconditioned taxi. Moral of the story, to me, is you will each of you either enjoy the trip, or not. And you will each of you be doing the best you can. That's about all we can do, at the end of the day. FWIW (for what it's worth,) Cindy

daddyof2

08-11-2007, 09:52 AM

Any thoughts on this would be appreciated. I had my tests done yesterday and got the results of my CK from the blood they took previously. My NCV was "normal" and my EMG was "99% normal" with some sort of "delay" I believe (but not sure). My CK was a "little high". I have been referred to a surgeon to get a muscle biopsy. Does anyone who has been through this testing already have any comments? Does this sound like ALS? Is the muscle biopsy pretty conclusive most times?

Thanks and still scared for my family.

Ray

Jamiet

08-11-2007, 11:06 AM

Ray,

I've been going thru this for a year now, it's to say the least, not fun. I just had a biopsy, it did hurt, but it will shed some light, hopefully. The biopsy is only as good as the muscle they cut out.

Mine showed rare atrphic and denervated fibers, however, it was essentially normal.

Whatever you do, don't give up and enjoy your family.

Rgds,

Jamie

daddyof2

08-23-2007, 10:01 PM

It does hurt pretty bad right now, but I know that the pain is transitory so its pretty easy to deal with. Its the dignosis that I am scared witless of. My Neuro told the surgeon to take the biopsy from my left bicep, but I now have a ton of twitching in my thighs when I go into a squat position. So, my thinking was to have a biopsy of my thigh as well to get the "best" sample possible. We could not get a hold of my Nuero, but the surgeon agreed and so he did two samples. I am soooo freakin' scared for my kids but I guess I need to know. Please wish me luck as I know everyone here can relate unfortunately...

Thanks

Ray

mamaoftwo

08-23-2007, 10:11 PM

Ray - did they do MRI's of brain and cervical spine. Sorry if I missed that in your earlier posts but your symptoms sound much more like MS than ALS to me. However, it would seem if they are sending you for a muscle biopsy so quickly, they suspect one of the myopathies or something. Remember that pain is not typical in the early stages of ALS nor are sensory issues such as numbness. Whatever it is may impact your life but you will still have one.
We will all be thinking of you. As Jamie said, try to enjoy your family for now. You never know, this could be something entirely treatable, even curable.

ltr

08-24-2007, 09:18 AM

Ray - I know the waiting after a biopsy is excruciating. They will know very soon, within a week, if there is a problem. If they hold out longer to call you, your chances of a good biopsy are good. So hang in there and I will pray that your biopsy dx something treatable. ~Leslie

daddyof2

08-24-2007, 10:54 AM

I really appreciate the replies and the support. I have not had an MRI done yet, and my Neuro did mention that this could be a Myopathy of some sort- either inflammatory or inherited. To your point mamaoftwo, this DX would be better than ALS but still scares me. I am probably preaching to the choir here, but it just seems to me that there are so few things that the Dr's can do for Neuro-muscular problems that I don't even consider something curable, or even treatable to some degree anymore. There have been so many advances in other areas of medicine- oncology for example- yet it appears that there has been little to none in these areas. Sadly, I never realized this until it affected me.

The non-biopsy related pain seems to have diminished recently, but my weakness appears to be accelerating and my atrophy is really pronounced in my legs. I have also recently been having an increasing amount of fasics and now am getting a tingling that is affecting my face around my mouth and eyes. Maybe I am just hyper sensitive to things right now, but my body seems to be doing more and more things that cause me concern. Here's to hoping I don't hear anything on the biopsy for a while...

Thanks again and my thoughts and prayers are with everyone here.

Ray

vmd

08-24-2007, 11:04 AM

Ray:

I'll pray the biopsy is clean for you.

Midnight

08-24-2007, 12:46 PM

Hi Daddy of two,

My husband had similar symptoms and they could not find anything for many years. Once I even had to call an ambulance for him once and have him taken to the ER, where they gave him an insane amount of narcotics to finally get his back spasms under control...and this is a man who doesn't even take Tylenol for headaches. Finally a doctor found that he had a crack in his spine that had been overlooked by some of the best doctors in the area. It is called Spondy or Spondylothesis and most radiologists don't see it, but if you are getting pain when you sit down (like legs going numb), I would tend to lean toward something more related to something irritating your spinal cord causing pain rather than autoimmune (but I am not a doctor). At least keep your fingers crossed and your thoughts/faith positive. I'll send my good thoughts your way to you and your family. My husband worked on getting his core muscles stronger and he does not have the pain anymore. Life is always a little more rich and a little more scary when we have kids, isn't it.

Icanmanz

08-24-2007, 12:52 PM

daddyof2

08-25-2007, 11:04 AM

My Neuro called yesterday to return my call of a couple of days ago. I told him that I had the biopsy done on Thursday which he sounded happy about. He indicated that the results of the biopsy would "trickle in over the next couple of weeks" but that I needed to come see him even before the results were back to discuss/ start treatment options such as Cortosteriods and IV Globbulin (sp?). I guess I should be happy that this process seems like it is moving along fairly quickly (based upon some of your comments), but it just reinforces that this is all real. I know that probably sounds weird, as I am typically a rational guy but I guess in the back of my mind I am still hoping that it will all just go away and I will be OK. It doesn't help that when I made the comment to him that "I thought there really isn't much to be done with these types of disorders", he replied "Well, I won't say that these work very often, but we have to try something."

I am usually a pretty strong person, but this almost complete lack of any real hope is just killing me. I freely admit that I am not dealing with this situation well at all, and am almost embarrased when I read how well some of you on this forum who have had an definitive ALS DX are coping. My hat is off to you all and in all sincerity and for a lack of a better way to say it, I am blown away by your courage.

I would like to ask a couple of questions of the forum here:

1) Have you experienced either first hand or through a loved one, the impact of a positive or negative state of mind on the progression or severity of the disease? I have felt increasingly worse as of late, and am wondering if my terrible state of mind has something to do with it.

2) As much as the atrophy, weakness, tingling and pain freaks me out, the fasics are almost the worst. They don't hurt, but they are increasing and per my understanding, tehy are the physical indication that some muscle fiber or neuron is dying and thus the progression is accelerating. Is my understanding correct?

3) My most recent symptom is that the heel and bottom of my right foot is starting to become painful when I stand on it. It almost feels like the atrophy has gotten to the point where my foot muscles have thinned so much that there is not enough padding and my nerves are pressing on the floor. Does this seem rational and has anyone else had this experience?

Thanks again to all of you who take the time to read my posts. I know I can be a bit long winded, but I find "talking" here to be helpful and allows me not to talk to my wife about these things as much, which I know would hurt her.

Thanks

Ray

mamaoftwo

08-27-2007, 09:36 AM

Ray - you havent seen a long post until you see my first one!!! These poor folks on here - I subjected them to a novel! So dont worry about the length of your posts. Anything you want to say is worth saying and therefore worth reading. I know what you mean about having somewhere to express yourself. I try not to talk to my husband about all of this because he has a hard time dealing with the fact that anything has changed. He hates having to help me with stuff not because he doesnt want to but because he hates that i need help at all, if you see what I mean.
Re your specific questions, i wish I could answer you better but I think there are others on here more qualified to respond. I will do my best:-
1/ I think there is enough medical evidence to suggest that no matter the disease, mental state will impact upon its course. My only direct experience with that is a friend who beat breast cancer. She cannot prove that her mental attitude improved her prognosis but she is certain of it. She beat all the odds and 4yrs later is cancer free. Stress makes everything worse. One of the PALs here wrote that giving up his fulltime job slowed his progression significantly. You won't beat the disease by thinking positively but you might make it easier to bear.
2/The fasics indicate muscle/nerve death - well yes and no. If they are part of a benign process, they are just annoying. If they are part of MND, then I believe they do signal neuronal demise. Again I am no expert. All I know is that for me the fasics are horrid. They obviously affect you mentally more than physically - a constant reminder that something is terribly wrong. I take neurontin which eases them a bit and mentally that helps.
3/ I dont know about the foot atrophy thing because my atrophy is in my hands.

Last thing - there is always hope. I agree that the people on here who have a diagnosis show unbelievable courage. I openly admit too that the stress of all this causes me to breakdown all the time. I dont have a diagnosis yet but the neuro said that "he knows something is wrong, he just doesnt have a name for it". That uncertainty is awful as Cindy said. I wonder too how if I cannot handle this, how will I cope with a diagnosis, whatever it may be.
I hope your muscle biopsy brings good news. We all want perfect lives and none of us believe that something like this will happen to us. When it does, it is crushing. While no-one wants to have a neurological disorder, people can and do go on. I have two friends with diseases that still live incredibly happy lives. One has MS and has had for 12yrs. She walks with a cane at the age of 37 but has a very full normal life. One has body inclusion myositis (sorry if I spell it wrong). He was diagnosed in his early 40's and is now about to celebrate his 66th birthday. He takes a ton of meds for pain but again has a very full life. All I am trying to say is that not everything is terminal and many are bearable. Even with ALS, there are people on here exceeding medical expecations and living full lives - read Mike's web (quadbliss). It is inspiring to see these people move on with their lives in the face of adversity.
There is someone, Richard, I believe, who posts on the General ALS page. He signs his posts "get on with living or get on with dying". Bottom line is that we only have 2 choices. Make the best of it or give up. I think what all these incredibly courageous people have done is choose life.
Good luck with your biopsy results. Whatever it shows, there are people on here you can talk to.
ps you see, another long post!

daddyof2

08-28-2007, 05:35 PM

I really appreciate the response. I am having a "bad" day today, as my right arm and leg feel particularly week and the tingling on the left side of my face has beeen bad. I am SOOO trying to maintain a positive outlook, as I am sure that it is important, but I am struggling. I used to think that I was a strong person and overcame adversity well, but this experience has stripped me of any pretense of strength. I am an absolute wreck. I am in TX on business, that could not be avoided, but actually left early today to come back to the hotel and cry. I am so scared about not being there for my wife and daughters or being there in such a way that is burdensome. Believe me I know I am a pansy, but like I said, I am struggling. It helps to say this to "someone" so thanks.

Ray

mamaoftwo

08-28-2007, 06:35 PM

Ray - take a deep breath. You havent got a diagnosis yet. There will be plenty of time for tears if there need to be any. You just dont know. Nor do I. I am, of course, good at dishing out advice and not so good at adhering to it. I cry too but NEVER in front of my little ones.
It is very hard I know. We're here whenever you want to talk. These people here are so wonderfully supportive. Post whenever about whatever. You will find someone who understands. Meantime, take an ambien and try to get some rest.
By the way, facial tingling is NOT a symptom of ALS. If I were you, I would feel relieved!!!

patricia1

08-28-2007, 07:14 PM

I have head and face tingling as one of my first symptoms But I think it was anxietyPat

Sammantha

08-28-2007, 08:49 PM

Your progression of symptoms sound so close to mine, especially the feet thing. My feet go numb with pressure easily because of muscle loss.... My first EMG was done by a doctors assistant and had a computer read out... The neuro did not think he would find anything serious.. Well, everywhere i had complained about showed fibs, facic, and psw's.. Normally neurologist's wouldn't even mention ALS so i am surprised at yours. Six months later my EMG was conducted at a University Hospital by a neuromuscular specialist, it took three hours.... So even early on EMG will produce some sort of irregularity, EMG irregularities can show before any symptoms... So if the symptoms you have now are still there and EMG shows nothing, more than likely you do not have ALS.. On the other hand you may have a spinal cord, or immune system problem which does not underestimate the pain and stress, but does give hope to the fact that it can be treated... The best of luck to you and yours, Sammantha

Kewanee

08-28-2007, 09:16 PM

:neutral: Ray - did they do MRI's of brain and cervical spine. Sorry if I missed that in your earlier posts but your symptoms sound much more like MS than ALS to me. However, it would seem if they are sending you for a muscle biopsy so quickly, they suspect one of the myopathies or something. Remember that pain is not typical in the early stages of ALS nor are sensory issues such as numbness. Whatever it is may impact your life but you will still have one.
We will all be thinking of you. As Jamie said, try to enjoy your family for now. You never know, this could be something entirely treatable, even curable.

My thoughts exactly. Be checked out for MS. And, there are other muscular diseases that have some of the same symptoms.

Jamiet

08-28-2007, 09:22 PM

Ray,

Hang in there, your biopsy results will tell alot. I would get some type of SSRI, like Wellbutrin, Zoloft, Paxil, etc. The Wellbutrin did the trick for me, got me living instead of dying. You have to find the right one for you, but, it will help. The right one, you won't feel nothing in the week you start....if you feel "weird", quit taking it and switch to another. It took me 4 to get it right. I think Effexor, Lexapro, Paxil then Wellbutrin.

Don't dx yourself and if they did the EMG in the atrophic area and it was normal, that is a very very good sign.

YOu have a very good neuro the way you are talking. He seems sincere, honest and forthcoming and cares about your well being. Stick with him. Most here can vouch, the good ones are few and far between.

Where are you from, you say you are in TX?

hang in there buddy......i have a good feeling it's something treatable.

Rgds,

jamie

daddyof2

08-28-2007, 11:25 PM

Thanks so much for all of your support and kind words. I can't express how much it means to be to be able to share these feelings with people who truly understand. Jamiet, you are right in that I am DX'ing myself, which is not a good thing, but its hard not too as things get worse on a weekly basis. It really seems to be accelerating. My quads are really atrophied and now my right arm is getting tired just typing this post. My EMG was "99%" normal according to the doc (not sure what the 1% was), so I guess I should take solace in that fact based upon what I understand. My neuro seems to be moving pretty quickly compared to some of the experiences shared on this board, so I guess that I should be positive about that as well. The fasics throw me for the loop, as it doesn't seem like much else has them as a significant symtpom.

Thanks again everyone and I know that I don't really know any of you and you don't know me, but as far as I am concerned, you are my friends at this point.

Ray

ps - I am in Plano Jamiet, but live in Orange County CA. I appreciate the advice on the meds and at this point am willing to try anything....

mamaoftwo

08-29-2007, 07:45 AM

Ray - if the fasics are what upset you most, seriously consider taking a med to reduce them. It made such a difference for me. Now I can still see the atrophy, feel the weird pains and sensations etc but the fascis have really backed off. That made a difference to my mental state. Apparently neuorontin has been used to treat depression as well so maybe that is why it works for me. Its not perfect but it helps.
I swear I am so up and down. Some days I think I can cope. Other days I feel crushed by the enormity of this whole thing. We are all in there with you.

guwainengle

08-29-2007, 08:05 AM

Mama--

How much Neurontin are you taking?

I was on 100mg 3x day and it did nothing-- then went to 200mg 3x day and still nothing-- now I am not taking-- how long did it take to stop the twitches... Your response may get me to start taking again.

Thanks- G

mamaoftwo

08-29-2007, 08:49 AM

Hi there - I started on 100mg x 3 per day - NOTHING! Then upped it to 200mg x 3 per day - NOTHING. Then up again to 300mg x 3 per day. Goodbye fascis. Well not completely but it made a massive difference. eg used to twitch 24/7 - worst in my feet, elbows, tongue and face. This morning so far (granted its only 10am) - 4 twitches that I have noticed. One in my tongue, one in my foot, one in my rib cage and another in my foot. They are tiny and single fire twitches. Nothing like the ones I had before neurontin.
By the way, I also gave up until my neuro told me that 1: I needed to give the drug time to accumulate in my system and 2: the dose i was on was the lowest dose they prescribe and I can safely go way higher than that.
I decided to try and am happier for it. Good luck.

myooshka

08-30-2007, 03:49 AM

I have read that muscle wastig/atrophy do not happen in m.s. not until later stages of the disease any thoughts on this?

daddyof2

08-30-2007, 10:52 AM

When I first met with my Neuro I tried to go over as much ground as I could with him as to what the possibilities were/are. My understanding is the same as yours that atrophy is not a primary symptom of MS. I am a layman though. He did not think that my symptoms were MS related- then again, his first "70%" guess was Polynueropathy, which was not indicated by the EMG and NCV tests and was wrong.

His new guess is some sort of Myopathy with a 50/50 chance of inherited vs inflammatory. However, ALS is still on the table. I am going to see him tomorrow to discuss treatment options, even though I don't think the biopsy results are in yet.

I have decided to take my wife with me for the first time,and as much as I want to shield her from this as much as I can, I think its time that she understood what may be in front of us. I have such mixed emotions about this as I don't want to hurt my wife and would like her to have as much time in the "semi-blissful ignorance" stage, but at the same time I really want her there for support.

I have a couple of questions for everyone here, please:

1- Has anyone gone through the typical treatments of Corticosteriods, immunosuppressive or IV immunoglobulin? Are the side effects bad? Can you continue working?

2- Has anyone officially gone on disability? At what point did this happen? At diagnosis? At the point that some sort of treatment started? At the point where your physical abilities diminished such that you could not work? Or at some other point? This is totally new ground for me, so any help would be appreciated.

Of course no post of mine would be complete without complaining about my latest symptoms. I am still having trouble breathing off an on, and now am having trouble swallowing. It seems more pronounced with liquids (including my saliva) than solids and I feel like there is something in my throat. My right arm and leg weakness has really progressed over the last several days as well. Lastly, I am starting to get an odd sensation over various parts of my body, but especially my head and scalp. Its almost like a warm shiver/mildly tingly sensation. Its different than the numb kind of tingling that I get in my feet or arms- sort of like when they go to sleep. Any thoughts on these would be appreciated.

Thanks again everyone.

Ray

ltr

08-30-2007, 12:37 PM

Hi Ray - right now my working diagnosis is myopathy, specifically polymyositis, though I have some symptoms that don't quite "fit".

I am on the 5th or 6th week of corticosteroids (Prednisone) and the side effects are not bothering me too much(knock on wood!!). The last time I took Prednisone it was a nightmare with more weakness and insomnia. Corticosteroids do give everyone an "uneasy" feeling and a sense of speediness, but I am not having that too much. They also cause weight gain of the bloated nature so your doc should tell you (though mine didn't) to watch your salt intake and carbs. I cannot work while doing this. I have a disability claim in action.

The symptoms you describe below are exactly the same as mine. Right leg and arm weakness, paresthesia with "vibration", new trouble with hoarseness, lump in throat, weakness of voice and neck. The Prednisone has not helped with these symptoms, but I have read it sometimes takes 4-6 weeks to start. I wish you all the luck with your treatment. ~Leslie

daddyof2

08-31-2007, 09:22 AM

I appreciate the response. I am 2 hours away from meeting with the Neuro with my wife to discuss this stuff. I also need to figure out how to handle this with work. Have the meds helped at all? Have you been DX'd with anything?

Thanks again and please keep your fingers crossed for me.

Ray

Icanmanz

08-31-2007, 09:45 AM

I appreciate the response. I am 2 hours away from meeting with the Neuro with my wife to discuss this stuff. I also need to figure out how to handle this with work. Have the meds helped at all? Have you been diagnosed with anything?

Thanks again and please keep your fingers crossed for me.

Ray

daddy, prayers to you and yours from a friend here in Houston/Tomball, Texas!!!

Irma

ltr

08-31-2007, 10:55 AM

I had a muscle biopsy that showed polymyositis and no, the meds are not working. Not a good sign.

daddyof2

09-01-2007, 07:10 AM

I met with the Neuro today, and the results of the biopsy were not in yet- which I expected. He however does want me to start a 4 day IV cycle of Solumedrol starting Tuesday and then what looks like a 6 week regime of Prednisone.

Doing some research on these two drugs has scared the heck out of me. The side effects sound common, severe and somewhat permanent. Does anyone else have experience on these drugs? Any advice on not starting this treatment until I get a definitive DX, hopefully from the biopsy? I want to get better, but these drugs seem really scary.

Thanks everyone.

Ray

mamaoftwo

09-01-2007, 07:49 AM

You dont say what the neuro said? What does he think this is? I am guessing since he is trying the steroids route, he thinks myopathy? I hope so. You seem calmer in your post so I can only assume you got some good news.

daddyof2

09-01-2007, 09:53 AM

Icanmanz

09-01-2007, 10:25 AM

I am glad that I sounded calmer in my post, but unfortunately not. I had a rough night again last night, up at four freaking out about my family and getting myself upset. The Neuro did not say anything new, other than to prescribe the treatments I mentioned. He is hopeful that it is some sort of inflammatory myopathy, but is not ruling ALS out. If it is a myopathy, he thinks 50/50 inflammatory/genetic which means 50/50 treatable/not treatable. The treatments sound horrible as well and I am really anxious about life insurance/disability as well for reasons that I won't bore everyone with.

My right side is really getting weaker as well and my swallowing trouble is becoming bothersome....

Thanks for responding and listening mamaof2

Ray

Hi Ray, (that's my husband's name)!! I read your post to mama, and my heart goes out to you. Prayers to you and your family. My prayers go out to all Pals, and Cals. I am praying your doc will be able to help you. All we can do is keep praying. How many children do you have, and what is your age, if you don't mind? Hi, mama!

Irma

Icanmanz

09-01-2007, 10:35 AM

Hi Ray, (that's my husband's name)!! I read your post to mama, and my heart goes out to you. Prayers to you and your family. My prayers go out to all Pals, and Cals. I am praying your doc will be able to help you. All we can do is keep praying. How many children do you have, and what is your age, if you don't mind? Hi, mama!

Irma

Sorry Ray, my mistake. Dumb me! I asked you how many children, wow, you are daddyof2!!! That answers my question!!!

mamaoftwo

09-01-2007, 11:31 AM

I know that feeling well Ray. I am awake most nights between 2am and 5am, either staring at the ceiling or pacing the floor. Sometimes, I just go into my kids room and watch them sleep. There is just no respite. I have tried things like ambien to no avail, I have even tried melatonin - nothing! The only thing that works for me is benadryl. Knocks me out cold but I always have a hangover type feeling the next day.
Back to your neuro - have you had EMG's. Cant recall. Sorry it is difficult to keep up with everyone's tests etc. At any rate, hopefully your biopsy will come back negative for ALS like it did for Leslie and Jamie. Did he tell you when your results will be in. I seem to recall Jamie had to wait like 3wks or something. Hang in there - easier said than done I know.

ltr

09-01-2007, 12:57 PM

Ray, your diagnosis is similar to mine and you HAVE to take the steroids (Solumedrol and Prednisone)!!!!! If you don't give it a try and it is myopathy then you can progress. You can get permanent damage that when you do take treatment for, cannot be repaired. Don't read the side effects because everyone is different. I told you what side effects I am having and they really aren't that bad. Hopefully yours won't be either. As far as long term problems, well you should wait until you see if the Prednisone works before you worry about that. Please, don't be scared, but happy that it might be something treatable. Take any treatment they will give you. Good luck.

daddyof2

09-01-2007, 08:57 PM

Thanks for your thoughts Irma and I have 2 beautiful daughters. Laney aged 1 and Devon aged 4. Mamaoftwo, it sure seems like you and I are in similar places. I can't remember the last time that I slept past 4am or was able to go back to sleep again. The Neuro said that the results would "trickle in" over the next couple of weeks. I don't really know what that means, but hopefully I will know something soon (although I am sure that you can all relate to maybe not wanting to hear). My EMG was "99% normal" according to the Dr.

I am obviously hoping that it is a treatable Myopathy, but given how long (in retrospect) this has been going on (~18mos - 2yrs), and my atrophy, it does not seem inflammatory. I am trying to stay postive, but as you can see, I am not very good at it. My understanding is that the steroids may make me even more depressed, which scares me. Man, what a pansy I am. Thanks for the advice as well LTR.

You are all in my thoughts and prayers as well.

Ray

CindyM

09-02-2007, 06:50 PM

I hope you get a great report when it comes in, Ray. regards, Cindy

daddyof2

09-03-2007, 08:59 AM

Thanks for the well wishes Cindy...

CindyM

09-03-2007, 09:02 AM

You are welcome Ray. Waiting takes special patience and more grace than i can manage most days. We are all in this togehter. Cindy

mk7

09-03-2007, 09:28 AM

Dear Ray

Many of the people responding to you have had their diagnosis for a long time. So the calm you hear in their replies is something that takes time.

In the meantime, I hear how concerned you are (rightfully so of course). It might be worth it to go see a psychologist or a psychiatrist to help you deal with the emotional repercussions of this period. Talking to a proffesional might help. Also, s/he may be able to reccommend an antidepressant to help you cope for now. Many of these medications have anti-obsession components that will certainly help you in trying to cope with the recurring thoughts.
Much much love to you.

Michael

jimercat

09-03-2007, 10:11 AM

Ray,

I hope the meds the doctor is putting you on will help you. In the meantime like Michael said, maybe some antidepressants would help if they don't contradict your other medication.

Let us know how you are doing. It is very difficult to deal with the unknown and I know it breaks your heart.

We are here for you.

daddyof2

09-04-2007, 09:46 PM

I agree and actually called the Neuro today to see if he could prescribe some sort of anxiety meds, but I didn't call back today. I had my first Solumed IV treatment today, with three more days to go before starting prednesone next week. I had the metallic taste in my mouth, was "spun up" all day and anxious, and my shaking was much worse. Of course I decide to go to an asian restaurant and eat with chopsticks. They were shaking like I was 80 y/o. I have a couple of really important questions that I hope someone may be able to help me with.

1- I was REALLY achy all day today, is that a side effect of Solumed for those of you who have been on it?

2- More scary is that I have essentially lost my voice today. Is this a possible side effect? This would be too fast and too early to lose my voice muscles to ALS wouldn't it?!?!?!?

3- Does anyone know about a drug called budensonide? Can it substitute for Prednisone? It sounded like it could and had less serious side effects.

Thanks everyone.

Ray

jimercat

09-05-2007, 03:57 PM

Ray,

sorry no one has been able to help you with your questions.

Please call your doctor about the loss of your voice! Are you having closing of the throat? You could be having a reaction. Don't want to scare you, but ... heck I'll PM him

MarguritaO

09-05-2007, 05:33 PM

Ray, first bless you and your family..my husband was dx with ALS in 2004..he also has diabetes and two blocked carot(possible missed spelled) arteries..he takes Baclofen for the twitching and Rilutek for what ever hope it gives..He walked thru three bouts of cancer with me and now I walk for him! We have been together I bet,longer than you have been living, so you can guess how old we are!Please think positive think for the children, waste no time on tomorrow today is what you have..dont spend it in unhappy thoughts..

CindyM

09-05-2007, 07:20 PM

Hellp Margurita. I see this is your first post. Welcome to the fourm and I am glad you found us. I like your refreshing viewpoint. MND is such a heavy topic that we could a little ray of light now and then! Cindy

daddyof2

09-07-2007, 10:52 PM

Well,

I finished the last of the 4 days of solumedrol IV today. The side effects were not too bad thankfully. I start 1.5 mos of Prednizone tomorrow, which I have heard can be worse. my voice has come back to 90% in the AM, but then fades throughout the day. I went and saw my neuro today and he confirmed that there is no known side effect of losing your voice on this treatment. Thus, I am scared witless that my voice muscles are getting weaker already from my underlying condition. Frankly, he gave me the feedback that this is a "shot in the dark treatment right now, since wedon't have a DX". I guess I already knew as much, but it hurt hearing him actually saying it.

I brought up my shortness of breath as well, and he referred me to a pulminary specialist to get a work up and baseline of my breathing. I mentioned my jaw muscles being tired and some swallowing problems, and he recommended that I come see him in 2-3 weeks to do more extensive EMG needle tests of more muscles such as my neck, jaw, leg, forearm and hand.

Still no news on my biopsy results (its been 2 weeks) and my Neuro mentioned that he only sends like 1 biopsy a year out, so he doesn't know exactly when it will come back. Does this sound odd to anyone that he only has 1/year done? I have a lumbar puncture scheduled fpr th 17th, but if I get a DX before by biopsy then I may cancel. Once i get my results, I will be trying to get into the UCLA Neuro clinic which is in the top 3 for NIH funding in the country every year for a second opinion.

I was able to get him to prescribe Lexapro for depression/anxiety. (any feedback welcome) Hopefully this will help. Having said this, I told my brother, father and best friend what was going on (needed to do so to complete my estate planning) and it wound up being a really helpful thing.

They have all been incredibly supportive, helpful and kicked my ass out of self pity enough to get some planning things done (insurance, estate, disability review,etc) which has helped my head SOOOOO much. I have been able to sleep through the night for the last 3 evenings by taking a 1MG valium and a sip of cough syrup before bed. I feel a little groggy in the AM, but nothing bad. I have not cried for a couple of days either, which is a huge improvement. Now if only I could get the damn biopsy results in.

Please keep me and my family in your prayers as you are all in mine.

Thanks

Ray

Icanmanz

09-07-2007, 11:02 PM

Ray, you are one great courageous warrior! What else can I say? God bless you!

Irma

CindyM

09-08-2007, 07:58 AM

Hi Ray- hope for the best and plan for the worst-that's what I always say! glad things are on the up-swing for you, emotionally. Cindy

ltr

09-08-2007, 12:04 PM

Ray - it sounds like you are really on good track. The very, very odd thing I have to tell you is that after I started Prednisone I, too, began with voice problems, weakness of my neck. Isn't that odd? It is not everyday, though. Some days my voice is hoarse and extremely weak, scares my family. Others it seems fine or might fade as the day moves on. I researched Prednisone extensively and could not find where it has been known to cause quicker progression, but it sure felt that way the first month. I twitched far more, had much more cramping and weakness and, of course, the voice issues. The only thing I can think of is that it gives somewhat of a "speed" effect, kind of like caffeine and that my intensify the symptoms. But, the good news is that now that I am in the second month, some of this, very little, has faded. I am still waiting to see if the treatment is working. It is hard to tell. I forgot to take it the other day and I was extremely weak and fatigued all day, so maybe it is working and I didn't realize it.

I wish you all the luck. Keep up with treatment because it's all worth a try.

daddyof2

09-10-2007, 07:22 PM

Folks,

Sorry for me absence from the board for some time, but I just could not bring myself to post anything until I knew something more. Now, I sort of do but sort of don't. I got the results of my muscle biopsy today and went over them with my neuro. Essentially, everything came back completely normal. The neuro indicated that in his opinion, the normal results eliminated ALS at a 90% level, but also eliminated at 90% what we had been hoping it was, which was a treatable inflammatory condition.

His current best guess is now Inclusion Body Myositis (IBM) which is not treatable, or some sort of other genetic disorder. I guess the biopsy test results did not include an electron microscope study, which is how they can detect IBM definitively. Why they did not do this, I don't know. He will be ordering these tests and thus I will be waiting more. I have a lumbar puncture scheduled for the 17th and we talked about genetic testing after that.

I guess that I should be relieved at the DX that he gave me a 90% assurance that I do not have ALS, but I am having trouble being so. I know that I have NO right at all to whine given the current company and what this board focuses on, but I still feel crushed that this not an inflammatory thing. Still being a pansy, I cried the whole way home from my Dr. thinking about my wife and kids.

If it is OK, I am going to stay with you folks as I continue through this extremely difficult process. You all have been a tremendous help and comfort, and I really don't want to lose it. If my posting is inappropriate due to this not looking like ALS, then please let me know.

Please continue to pray for me and my family as I continue to pray for all of you.

Ray

CindyM

09-10-2007, 08:21 PM

Stick around as long as you need to, Ray. I especaily like your sensitivity to those who have been told outright that they have MND. Like you, I try not to complain about my own troubles when others face so much worse, but that dos not mean we don't need support and information too! :-D Cindy

jimercat

09-10-2007, 08:48 PM

Ray,

Thank you for posting, as there have been some asking questions about "dents" or "dips" in their muscles. After looking into the definition of IBM, I would say it is very clsoe to ALS.

Any information you can provide will help all of us in the struggle to understand the human body and it's complexities.

I looked up IBM on Wikipedia:

"Sporadic inclusion body myositis (sIBM) is an inflammatory muscle disease, characterized by slowly progressive weakness and wasting of the distal and proximal muscles, most apparent in the muscles of the arms and legs. In sporadic inclusion body myositis [MY-oh-sigh-tis] muscle, two processes, one autoimmune and the other degenerative, appear to occur in the muscle cells in parallel. The inflammation aspect is characterized by the cloning of T cells that appear to be driven by specific antigens to invade muscle fibers. The degeneration aspect is characterized by the appearance of holes in the muscle (vacuoles), deposits of amyloid-related proteins within the cells and filamentous inclusions (hence the name inclusion body myositis) of abnormal proteins."

This isn't pleasant AT ALL is it?

Please keep us informed on what dx you do finally get. You will help those seeking a dx if their symptoms match.

ltr

09-10-2007, 08:50 PM

Ray - I am so sorry for how things are going for you. You don't even have to ask to stick around here, you obviously have something mimicking an MND. And, unfortunately, inclusion body myositis is a terrible disease with no treatment and as debilitating as als. I pray you don't have that either. There aren't really any forums that help with myositis, so, if you are going to need help because of progression of whatever disease you have, then this is the place to get it. Try to find some peace.

daddyof2

09-10-2007, 09:17 PM

I really appreciate it. I watched my wife break down and cry for the first time tonight, and it ripped my heart apart. I cannot express in words how much it pained me to hurt the one I love with all of my heart. I know that this is not my fault per se, but I can't seem to stop apologizing to the ones that I love. I know that I am going to cause them such pain....

Thanks again everyone.

Ray

jimercat

09-10-2007, 09:39 PM

Ray get a grip!!! I know what you are thinking. Do not pass GO - go straight to the doc and get the meds to help your attitude!

My husband has had this same sorrow. You need to realize how much the people around you love you unconditionally.

It doesn't matter if you are religious or not, but you have to know that when you look into someone's eyes- they are the "windows to our souls." Look into your wife's eyes and know that she loves you.

Your wife and children will be able to handle it! She will have a hard time for a while accepting a dx that there is no cure for. Just give her some credit my man!!! She can handle it!!! It will take some time, maybe a long while, and I speak from experience.

You hang in there and don't give up Ray!!! This isn't the end, you will find it is a new beginning!

daddyof2

09-11-2007, 12:05 AM

I appreciate the advice. I think that my head hears you, but my heart is the problem. I know you are speaking from first hand experience, so it helps though. Please wish me strength.

Ray

Gary Morgan

09-11-2007, 05:56 AM

Scared for me and my family... help please

--------------------------------------------------------------------------------

Hello all, and this is my first post to the forum and I apologize for its length. I hope that you can help guide me through what I beginning to fear may become a reality. Any feedback on this lengthy post would be most appreciated. I am 40 years old.

About 18 months ago I began to notice that both my legs felt week. I first noticed it when pedaling a three wheeled bicycle with my 2 y/o daughter and my then pregnant wife. I chalked it up to being out of shape. In looking back, at about the same time, I noticed my hands were a bit weak and a little achy, and things like ripping up junk mail was tougher than it used to be. I chalked it up to getting old. Both continued to be mildly annoying, but I did not think much of it.

About 12 months ago, I started noticing that my legs would get tingly and numb if I sat on the toilet for more than 5 minutes or so, and that my arms would go numb if I slept on them. Once again, I thought that I must be getting old.

About 3 months ago I was bending down to pick up a beach towel after waterskiing a bit, and fell over in agony. It turns out that I had major back spasms for the first time in my life. After several trips to the chiropractor, xrays and lower back MRI, to identify some mild disc degeneration, I have fully recovered by stretching everyday. (not sure if related, but my theory is that I was using my back to overcompensate for my weak legs)

Over the last 2 months or so, my leg numbness and weakness has gotten much more pronounced (almost constant), and has also included my arms now. I can barely hold my one year old daughter for more than 3 minutes without my bicep muscle becoming agonizingly painful. I also am achy all over (especially the shoulders and forearms) and have started to notice twitchings all over my body. They are not constant, but happen fairly often throughout the day.

I went to my GP two weeks ago and had all the typical blood work done which came back negative. I then went to the nuerologist yesterday and he did an initial evaluation. From what I can tell, I had no gait abnormalities, could stand on my toes and heels and walk fine, and he seemed OK with my other movements (I think). The one thing he mentioned to me were my "brisk reflexes", which I beleive are a symptom of ALS.

His preliminary diagnosis is that I definetely "have some illness". His best guess is Peripheral Polyneuropathy, however he is also considering Myostis and Myopothy, but did not seem to think that these were the cause. When I asked him about the possibility of ALS, he looked up from his notes and indicated that yes, this is something that we should be concerned about given my symptoms. I am scheduled for the neuro-tests next Friday.

In thinking (i.e. worrying myself sick) about this the last 24 hours, looking at my daughters and candidly crying a couple of times, I realize that my leg weakness is really more in my upper legs and my arm weakness is really in my upper arms (biceps primarily) while my numbness is in my lower legs and arms. I ache in my shoulders and both of my arms, but there is little pain in my legs. I do notice that my balance is off a bit and little things take more concentration for me to do. I can do them, but I now have to think about them more- i.e. turning on a light switch while walking. Not sure if this matters or not.

So, I guess my questions are these:

- Thoughts on my symptoms being ALS?
- Does my story sound similar to anyone's experience here?
- What are the neuro-tests going to be looking for to make an ALS diagnosis vs something else like Peripheral Polyneuropathy?
- Any advice on how to cope....

Thanks VERY much for anyone's help as I am REALLY scared right now.

Ray

Ray
Welcome to the forums! I too am new here but have already got loads of information and help from the folks here, and you will too!
Yes your story sounds very close to mine, lost use of most of my right arm and gand, and legs have gotten weaker faster then I want to admit. I was dx with ALS in January but had haved a few years of light hand pain and use, just wrote it off as arthitis or carpel tunnel. After several EMG's and 4 MRI's I found out different.
I am a single male 46 years old and scared alot! Pride has always gotten in my way, and looks like I am going to have to shake that off real soon!
Hang in there buddy, you'll be in my thoughts and prayers!!!
Gary

daddyof2

09-12-2007, 08:36 PM

Gary,

I am so very sorry to hear that you have officially been DX'd with ALS. My prayers are with you. It sounds like you are dealing with things better than me, so you should be proud of yourself IMHO! I appreciate the kind words and will keep you in mind as I go through this thing....

Ray

daddyof2

09-12-2007, 08:52 PM

Folks,

So, I have decided to more pro actively manage my medical process as I am beginning to get frustrated with my Neuro. While I think that he is doing what he can, he is grudging at best in answering questions or giving me information. Case in point was that the biopsy dr was "some guy in Long Beach who has been doing this for 30 years." He wouldn't give me a name, couldn't or wouldn't give me a timeline, etc.

To make a long story short, I found out who the biopsy guy was, what hospital he was at and got the # from 411. I called his office today to verify that my Neuro had ordered the Electron microscope tests to look for IBM. Lo and behold, when I called the main # and asked for his office, they transferred me to his direct line and he picked up. I was honestly sort of stunned, and asked if i could have some time. He said that he was in a meeting but took my # and would call me back.

Sure enough, 3 hours later he called me back and spent 30 minutes walking me through the biopsy results, asking me questions and genuinely being helpful and compassionate. He took the the time to explain things to me in a non condescending fashion, and explaining his thinking about my particular situation and the testing that he had done over the last couple of weeks on my muscles.

Here is the kicker. When I asked if he had heard from my Neuro about the electron microscope test to look for IBM, he said "no, I have not heard from him yet" (my neuro committed to me to do this on Monday) and perhaps even more importantly, "your neuro is wrong."

He went on to explain that the stain tests he did on the entire muscle sample which he put under a high powered (but not electron) microscope would have had a 100 times greater chance of showing the sings of IBM (vacoules) than a super tiny piece in the EM. Basically he said that it would be like looking for a needle in a haystack looking at one handful of hay vs the entire stack- an analogy that makes total sense to me.

At this point, I don't know what to believe, think, or listen to. I am going in for a spinal tap on Monday, but seriously want to ask my Neuro about my conversation as well. Does anyone here have any advice as it relates to the medical info or the experience that I just had?

As always, thanks everyone.

Ray

Icanmanz

09-13-2007, 09:27 AM

Hi Ray! Oh please, don't blame yourself. It's not your fault that you are sick. It's only human for your loved ones to cry over this. Let them cry. God says it is alright to cry. He will give you and your loved ones comfort in due time. I ached for my son so much, and I cried soooooo much during his illness. I cried day in, day out. My eyes were swollen all the time, and looked so drained, my folks were worried about me as well. If you were to see me 3 months later you would not believe it. Why have I gone this far? The reason is I know our Heavenly Father cradled my son in his arms, and carried him home. He is no longer in pain. I thank our Father for the nearly 39 years that we had our baby!

May God bless you and your family. I haven't been posting for a few days because I went to a funeral in Dallas. My oldest brother lost his wife to Diabetes. I have been busy keeping an eye on my brother, but he is coming along, bless his heart. I have never seen him cry until then, and it broke my heart. He is getting a lot of support from his family, or should I say we are spoiling him, LOL!!!!
Take care Ray. God bless you.

Irma

duplinwino

09-13-2007, 03:15 PM

Ray, I haven't read all of these posts until today and wanted to say I'm sorry you're going thru this. I am on the opposite end, I am the wife to a husband who went thru this same game of waiting and wondering and testing and who wants to protect me so some of your posts are heart breaking to me.

I would perhaps at this point get a msg to your neuro and explain your findings. I'm a passive aggressive person though and would probably say that I called to find out how long these results would take, and lo and behold, the actual guy answered the phone - and go from there.

I think you need to ask for a 2nd opinion referral as well. Your neuro should not be offended by this and should welcome insight from a colleague.

Hang in there.

Ashley

daddyof2

09-18-2007, 08:46 PM

I appreciate the kind words Duplinwino, and your experience. Its just really hard for me being the stereotypical, sexist male I guess. I am supposed to be the provider/strong one for my family and the idea of me being a burden affects me so strongly. I just feel so skinny and weak already. Once again, I want to be sensitive to others on this board, s0 please excuse my complaining.

On an update note, I had a spinal tap done yesterday, which was not too bad, but I have had a RAGING headache and intense nausea if I stand up at all. I have spent the entire day working on my back in bed with my laptop as I am trying to minimize the impact to my work since I am worried about insurance. I don't know exactly what they are looking for other than MS- which I don't seem like I have.

I also have been referred to UC Irvine's Neurology clinic by my Neurologist, and the first appt available is on 10/8. Hopefully this path will turn out better than the one that I have been on. God, I am still scared (and obviously still a pansy)

Ray

pldo

09-19-2007, 05:12 PM

Ray,

First of all you are not a pansy- you are brave for going through all of this!

I lost my father to a brain tumor. He told me he thought that he had one before he told my mother, and then told me not to tell anyone becaue he was scared. He did not me and my brother to be without a dad. We all cried. Crying is a way of showing you care, you are there, you feel. The human soul is resliant. I love my father, I think of him everyday. I know this is of little comfort, but everyone has a place and everyone makes a difference. If we do not have much time on this Earth it is because we are being called for something greater. Our loved ones know this on some level.

AngelManFL

09-30-2007, 09:07 PM

Ray,

I pray you are doing well, it is your thread or string or whatever the term is that encouraged me to join this forum... my own case is unknown and may be brief.. but I do pray and hope for you and your family, love them with all your might and joy. Please let us know how you are, tears are cleansing and healthy, share them with your family - it will help heal you and give them strength....

nspoc

10-01-2007, 10:27 AM

Hi Daddyof2 -

I do not know where you live in California - but if you could possibly get to UCLA that is where I would go for a diagnosis. If you do have ALS (hope not) a full scale ALS clinic is best. We can discuss that when you get to that bridge.

As far as UCI Neurology is concerned - I really do not know - but UCI has had huge problems over the years in MANY departments, some including fraud.

I am familiar with UCLA because I worked there - very professional, thorough and compassionate. My best friend, and the person I care for with ALS, worked at UCLA for 30 years, and got her diagnosis there - then she moved to be with me in the Chicago area. Others here have also been through UCLA.

I hate to have you chasing your tail- but if you have the option, UCLA is just a stronger institution in every way.

I don't mean to promote any particular place, I am just skeptical of UC Irvine.

Best of luck and I will be thinking about you. Beth

PS - Maybe you can start a thread asking about people's experience with UCI - maybe it is just fine - but hate to see you find another place that is less than optimal.

Midnight

10-03-2007, 01:10 PM

Hi Daddyof2,

I am so sorry for what you are going through. You sound like such a kind person, a loving husband, a father in love with his little ones, and I think you should be proud of yourself for how you have handled things. It is hard so hard to deal with your body going haywire on you.

I am glad that the subject of medical places was brought about. I also have some questions about doctors and clinics in Southern California. I do know that UCLA is VERY difficult to get into. I have been trying to get in and just barely go a call back after two doctors written referrals (one from a neuro and one from a GP), with breathing issues... and it has been 2 months. I heard that the way to get in quickly is to go through the ER, and I have been close to doing it that way.

I heard that Dr. Michael Graves is a good person to see at UCLA. Does anyone know about him?

If you want to try UCLA, here is the website that I used to print out physician referral forms for my GP to forward. My neurologist had his own method to contact them.

http://www.neurology.ucla.edu/clinical.jsp?m=2&s=3_1

Here is UCSD's website (because it sounded like you may be further South), although I have no feedback personally for them:

http://health.ucsd.edu/specialties/Neuro/ALS.htm

Also, the MDA Clinic in Santa Barbara has a doctor named Dr. Frecker. He is also difficult to get in to see. His number is 805-569-7287 and they answer the phone "outpatient surgery" when you call, but they are an extension of Cottage Hospital and if you ask for Gina or Teresa and tell them you are calling about the MDA clinic, they will help you. I have heard some great things about Dr. Frecker from an attorney who handles medical issues in the area, but am still waiting to see him.

Again, I'd love to know any feedback anybody knows about these people, UCLA in particular. Let me know what County you are located in and I'll give you more referral information if I can.

Best wishes to you and your family. It is what it is, and you would love your wife no matter what, so my only advice to you is ... just let her love you and stop beating yourself up for what is out of your control. None of us asked to be sick and it is nice to have a place to understand each other.