Scared for me and my family... help please

[mamaoftwo]

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]

Thanks mamaof2

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]

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]

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

 

[Sammantha]

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]

: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]

Hang in ther

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 diagnosed 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]

You folks are fantastic

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]

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]

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]

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]

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]

MS reply and more questions

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]

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]

Thanks Leslie

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