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daddyof2

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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

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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

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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

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Thanks for the kind words

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

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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

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Update from my NCV and EMG tests

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

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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

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Thanks Jamiet- I got my biopsy today

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

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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

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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 diagnosed something treatable. ~Leslie
 

daddyof2

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Thank you

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

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Ray:

I'll pray the biopsy is clean for you.
 

Midnight

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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

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daddyof2 said:
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


Ray, may God bless you. I'll remember you in my prayers. I pray to God it's something that is curable. Let us know, buddy! God bless!

Irma
 

daddyof2

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Thanks everyone

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
 
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