Atrophy

[DrewSmith1984]

Hey Everyone,

Since my last post I have been trying to remain confident about the situation in which I seem to find myself in. However, I cannot seem to get over this fear of having some incurable neurological disorder. In the past two years, since the onset of my symptoms, I have seen two different Veterans Administration Neurologists and have had countless tests, all of which come back negative, performed. I know that this alone should provide reassurance but I am not satisfied because deep down I feel something is wrong.

I had an EMG performed, on my right side, at the Chillicothe Ohio VA Medical Center in the 3rd quarter 2011. With that being said, as you can probably guess, everything was normal. However, the right side of my body, legs, arms, back and shoulder continue to feel weak and fatigued. This has lead to a constant, never ending, comparison between the two sides of my body. Which has directly led to me feeling that I have atrophy in my right calf and my right hand. With that being said, I was going to post some pictures with a little bit of information, however, for some reason I am not aloud to post attachments. Anyone know what this is about? Kind of makes my entire post useless unless I can show you all what I am talking about

 

[Ms. Pie]

So you are saying you are obsessed with measuring your body parts, have health anxiety, and OCD. I ask this in all seriousness and with respect. Have you considered seeing a shrink?

 

[momap53]

Your Neuro would have picked up on any atrophy in your hand or calf during his/her exam.

 

[Toto's Dorothy]

Oh marta, straight to the point.

Drew, may I ask,ksince you mention va, were you stationed in any war zone activity. I ask that because you could be suffering from ptsd. If not, then iagree with marta 100%. The emg, bloodwork, clinical exam were all normalk. Thank GOD, you're one of the lucky ones. Get off here and celebrate.

 

[trfogey]

Posting an attachment to a post is a privilege that you gain by being an active member of the board for a period of time. That having been said, posts of pictures of body parts will have to be approved by a moderator, so not many of them make it through, which is a blessing to the vast majority of the rest of us who frequent this forum.

Therefore, my suggestion to you would be to take your photos of yourself and the body you are currently inhabiting to a non-VA primary care physician and start the diagnostic process over with private physicians. You obviously don't trust the opinions of the VA neurologists, so go to the clvilian experts.

 

[Kitchener]

Drew
From your post you having something wrong with you, but I'll give you 100:1 right now it isn't ALS. There is a huge difference between feeling weak and being weak.
Please speak to someone who is experienced at pastoral care, or better still a mental health practitioner. You might be surprised with the results.
Please keep us posted as to how you go
Kitchener

 

[DrewSmith1984]

So you are saying you are obsessed with measuring your body parts, have health anxiety, and OCD. I ask this in all seriousness and with respect. Have you considered seeing a shrink?

Ms. Pie: Yes, I have considering seeing a shrink. However, its hard for me too accomplish this because I don't have insurance and when the VA schedules me it usually interferes with school.

Oh marta, straight to the point.

Drew, may I ask,ksince you mention va, were you stationed in any war zone activity. I ask that because you could be suffering from ptsd. If not, then iagree with marta 100%. The emg, bloodwork, clinical exam were all normalk. Thank GOD, you're one of the lucky ones. Get off here and celebrate.

Toto's Dorthy: I was stationed in Iraq. I am currently in the process of getting diagnosed with PTSD.

 

[DrewSmith1984]

Your Neuro would have picked up on any atrophy in your hand or calf during his/her exam.

momap53: Could there be a possibility that the atrophy, if it is indeed atrophy, had not progressed enough to be detected by the neurologist or the EMG?

 

[kiwisally]

Drew, anything is possible, the question is, is it likely.

 

[trfogey]

I'll repeat this for your benefit, DrewSmith1984 -- atrophy is the last symptom to appear in a case of MND. The paralysis of muscle fibers causes weakness, changes in reflexes, and changes in muscle tone and range of motion that appear when the paralysis starts. Atrophy occurs later -- in the case of large muscles, weeks later.

If you have significant muscle atrophy due to MND, you will have had equally significant weakness, pathological reflexes, and pathological muscle tone before you get the significant atrophy. It's not optional or occasional -- it is how the disease works.

 

[Kitchener]

Hi Drew
Just to follow up on muscle atrophy. Even if you have it, doesn't mean you have MND. I have experienced muscle atrophy on my right hand. I can see it, my wife can see it, my GP can see it and my neurologist has also acknowledged it - in writing. It is incontrovertibly there. It was also presaged by weakness when the muscles looked fine - in fact they looked great except they didn't work so well. The point of this post is that despite the weakness, despite the atrophy and despite 3 "dirty" EMGs it is still highly unlikely that I have MND. I most likely have something else, and so do you. I hope you find peace in your journey to diagnose your physical ailments, and I reallly hope you can find the strength to look down a different path than the one you have embarked on.
Take care
Kitchener

 

[DrewSmith1984]

Hi Drew
Just to follow up on muscle atrophy. Even if you have it, doesn't mean you have MND. I have experienced muscle atrophy on my right hand. I can see it, my wife can see it, my GP can see it and my neurologist has also acknowledged it - in writing. It is incontrovertibly there. It was also presaged by weakness when the muscles looked fine - in fact they looked great except they didn't work so well. The point of this post is that despite the weakness, despite the atrophy and despite 3 "dirty" EMGs it is still highly unlikely that I have MND. I most likely have something else, and so do you. I hope you find peace in your journey to diagnose your physical ailments, and I reallly hope you can find the strength to look down a different path than the one you have embarked on.
Take care
Kitchener

Kitchener: That is encouraging to know, thank you. If you don't mind me asking, what have you been diagnosed with, if not a MND. Also, you had mentioned finding strength, and I just wanted to say that one thing that gives me strength is talking to people like you who have so graciously taken the time to reassure me that my fears are probably unwarranted. I want you all to know that I truly appreciate your time, as I am quite sure that it is probably one of your most valued commodities.

Thank,

Drew

 

[Anja]

Hi Drew,

My right foot and lower part of the leg doesn't FEEL weak, it IS weak and the same for my left hand, both are paralysed, it takes a lot of energy to walk, i enjoy walking but it drains me. Still i can walk and love it. I love all stuff i still CAN do and focus on that instead of panic about ALS which in my case could be a possible diagnose (but not the only one). I trust the docters and am in the process of being diagnosed. I don't obsess about muscle loss but there is and everyone with a clear sight can see that. I have an open mind and am positive whatever my diagnoses will be, i take it from there.

Your situation is so very different, you already heard from your neuro it is not ALS & i hope i will join you soon!

The symptoms you describe are often part of ptsd which is very serious BUT can be treated. Accept all help you can get YOU are important and deserve what will help you! Too bad for school, you can get all education but 1st help yourself and let VA do this, trust them.

Whishing you peace of mind! I wish i had such great test results as you got, but i didn't. Be happy nothing is wrong there dear Drew! Stop the comparising, it drives you crazy and you deserve happiness and peace of mind and health in all areas of your life.

Take care Drew!

Anja

 

[Kitchener]

Hi Drew
I don't mind you asking. Unfortunately I can't give you a straight answer as I haven't actually been diagnosed with anything. This is after 1x head & cervical MRI, 1x lumbar puncture, 3x EMGs (all "dirty", whatever that means), 6x clinical examinations, 1x genetic tests, gallons of blood etc etc. I have now had 4 separate diagnostic theories of varying conviction from my neuros as follows:
1. An MND "of some sort"
2. Multi-focal motor neuropathy (MMN)
3. Spinal Muscular Atrophy Type 4 ( genetic condition, ruled out on genetic test)
4. Restricted anterior horn cell disorder (like MND, but only affects the arms)

Number 4 is the current most favoured theory. Luckily for me its the best so far. In fact each one is better than the last; at this rate I'll be right as rain by next year.

I want to leave you with the picture that none of this stuff is straightforward. ALS is also a very rare condition. If your symptoms can be explained by something else, then that is the far more likely probable cause

Good luck and stay strong

Kitchener