My neuro vist & biopsy result

[olly]

hi april

good to hear you are feeling better.
i hope you are enjoying your weekend,we have rain here yet again.
i got exhausted just reading about all the things you have lined up to do.
please don't burn yourself out,take it easy and make sure you still get plenty of rest.
take good care.
caroline:-D

 

[BethU]

Hi, April . ...

So glad you are feeling better. It is sooooo hard to deal with the uncertainty, but you have so many blessings in your life, I'm glad you will be able to enjoy them without the dread of ALS hanging over your head.

All best,
BethU

 

[wright]

I was kind of in a hurry when I replied to your original thread and forgot to answer your question about scattered muscle fiber atrophy. That would be indicative of acute denervation in the absence of reinnervation (reinnervation is something that is seen with chronic denervaton). This is something that would be seen with an acute neuropathy.

A scattered pattern of muscle fiber atrophy could also indicate a myopathy.

With ALS, what is typically found is both acute and chronic denervation. Therefore, there would be scattered muscle fiber atrophy along with fiber type grouping (fiber type grouping is indicative of reinnervation . . . and thus . . . chronic denervation).

I hope your spirits are still high. Take care.

 

[CindyM]

Hi April. I can sympathize. There are just so many emotions in our hearts over these tests! Like you, I don't want anything bad. And like you, it is hard not having answers. Hang in there! Cindy

 

[awieleba]

One more question WRIGHT

I feel nervous now, so scattered atrophic changes are denervation? I asked her if there was denervation and she said no, and this was a good result for me. Was she 'glossing' over this based on my fears? I did of course research this result on google and websites and I do know that it is or can be a neurogenic disorder. I just wonder if these 'scattered' groups will eventually grow together in a group and then be more indicative of something, sound possible? I should not ask so many questions. I was told once not to ask a question if you did not want to really know the answer and I am not sure I do.......

Thanks!

april

 

[puzzled36]

April, I know that scattered atrophic fibres are a common biopsy finding with charcot marie tooth disease (chronic motor/sensory neuropathy). I have a lot of research concerning muscle histology. Do you know if the muscle fibers were round or angulated?

Gina

 

[awieleba]

no I dont know but I researched that also. I thought round was myopthy and angular were muscle.
I am going to have all my records from her sent to my gp. My gp is wonderful and always gives me copies and is willing to help.

What were yours? on your biopsy, and where was your taken? Do you think that it was ok to go in only one place and not in the place where my leg is thinning (left outer ankle).

*****when your neuro said that 10% dont get a diagnosed, what does that mean? does that mean they get worse with no diagnosed or stay the same or get better?

It seems that we have alot of the same things and you are farther down the road then me and I would like to share............

ps she said no myopthy, per emg and biopsy, so probale not rounded.

 

[wright]

As I said, scatterd atrophic muscle fibers is indicative of acute denervation. You have had symptoms for quite some time, so if you had chronic denervation, it would have more than likely shown-up on your biopsy.

In order for the fibers to have not shown fiber type grouping (again, a sign of reinnervation and thus chronic denervation), the rate of ongoing denervation would have to be very fast. That means you would be progressing very fast and you aren't.

Call your neuro with your concerns and ask her to explain it to you in more detail. I can only give you my thoughts based on what you have told us. I don't have your results in front of me, so I can't give you any more than I have. Your neuro will be able to do that for you.

Take care

P.S. All of your symptoms are not indicative of Charcot-Marie Tooth Disease

P.S.S. One other thing I have to say: even if you have chronic denervation, it doesn't mean you have ALS. There are many, many, many, many, many things that can cause chronic denervation

 

[happy]

April,

I had to check in on everyone and came across your post. My heart goes out to you. I get my final diagnosis on Friday. There is one thing that I must say..that is ,please believe the Dr when she says that you dont have als.

I know how hard it is to believe it when we do so much research and the symptoms just dont line up. But, there in lies the problem. If you are anything like me I have to have an answer for everything. I think that all the research I do, that I can pretty much diagnose myself, not the case.

Our bodies are so complex and the neuro system so intricate and way beyond the commoners understanding. I think that it is difficult for us (personality types) to wrap our minds around. I am not negating your symptoms at all, but I do believe that if you stop researching and just, like Rose said in a post to me, put that energy into other things, you will find that you are not experiencing the same debilitating symptoms that you were when you are reading.

Maybe, just maybe, you could start a rehabilation program and put all you efforts into that? That's is what I have begun to do, and it is working. The mind is a very powerful thing...truely.

I really pray that you dont think that I am negating your feelings, because I am not..I just care for you and would love to see you take the diagnosed that your dr. gave you and LIVE! I began to think before my dr mentioned Lou Gerhigs that I could not live until I found out, but even though I do not have the answer until this Friday..I have stopped dwelling on it every day and my life is better. It is almost as if it is not in my mind. And even if they do say I have it, I look at all the things I CAN do and I focus on that. Please be well, and let your heart have a rest, you're going to be fine..I just know it.

Your Friend,
Happy

 

[puzzled36]

Wright, I think you are very knowledgble but you may be incorrect on this one. With neurogenic or denervation atrophy, The denervated myofibers become smaller and more angular , but otherwise remain intact. The cross striation usually persists until very late in the process. Since a single motor unit supplies many fibers, denervation initially results in randomly scattered atrophic fibers. With further involvement of adjacent motor units, groups or whole fascicles of fibers become atrophic. This is known as group atrophy. This is seen in many neuro disorders - SMA, peripheral neuropathies, polio and ALS - and relates to type 1 fibers. Propenisty of scattered atrophic type 2 fibers are seen with disuse atrophy and other diseases that do not involve the lower motor neuron or its axon. I think that to say having symptoms for 7 months would have resulted in chronic changes is a jump on your part and not supported by science but based more on opinion.
April, I dont think you have ALS. I dont know what you have but I believe something is going on with you. As far as what happens to the 10%, I dont know. I hope not much and that we're both in that category. My biopsy was from my left bicep. No, I dont think it matters that they didnt take it from your affected leg.

Hang in there. You will get answers eventually or maybe you'll get better with the PT and you can put this whole scary time behind you.

Take care.

Gina

 

[wright]

I'm going to have to respectfully disagree with you on this, Gina.

If she had ALS, she would have both acute and chronic denervation; that is absolutely required for ALS. By the time someone shows symptoms of ALS (weakness, atrophy, etc.) . . . if they are indeed due to ALS . . . both forms of denervation would be evident.

My reply to her was in reference to having ALS: as of today, she doesn't have it. It's as simple as that. Not one test she has had, indicates she has it and her neuro flat-out told her that she doesn't have it. She has something, but it isn't ALS. Can she get it at a later time? Yes she can but so can anyone else.

P.S. Chronic denervation causes fiber type grouping, which is different than lots of other fibers becoming atrophic.

A motor unit involves a singel axon and the muscle fibers that it innervates . . . and these fibers that are innervated are scattered and not next to each other. That is why you would have a scattered pattern of atrophy with acute denervation.

When you have chronic denervation, an adjacent axon starts to reinnervate those denervated muscle fibers and those muscle fibers take-on the same properties as the muscle fibers of this new axon. Therefore, physiologically and anatomically the muscle fibers are the same, and thus become "grouped" . . . and . . . those grouped fibers are not atrophic.

P.S.S. When it comes to denervation, more than 6 months is considered chronic.

 

[Jamiet]

OMG April, you are so much down the same road i went.

I'm still there, but April, my life is sooooo much better right now. I live with the twitches, cramps.

Trust me, your mind is making you sooo sick right now. The anxiety and worry is making you literally ill. Trust me i was there.

April, first, you need to find a good person to talk too. I found one of the best doctors to talk to, he got me thru all of it. find you a good psych! Trust me. My psych has belived me from day one and still to this day says i very much could have it, but he has cured my anxiety and worry.

Today, i feel so much better, but yes still have the ALS symptom crap. Will I be diagnosed,,,,,,prob. so, down the road.

I found that not worrying about it and freaking over it makes things much easier to cope. I stay away from doctors now, taken a break and it's been a year. I still see a local neuro and we've come to an understanding that i'll see him every 6 months and if it comes, it comes. Right now, if it comes there is literally nothing i can do about it except get on his ALS clinic list, get on SS, get on the MDA list and then...hope for a cure.... not much to be excited about getting on.

So, April, as hard as it sounds, you need to try to get on with life. You need help, you need someone to listen to you and help you thru it. This internet forum, as good as it is, is not person to person help. Please, for me, find you a psych, make sure it's the right one....you will know if they are the right one.

Your just like me, have something wrong, we all know it and now a biopsy that shows scattered atrophic fibers. Go look up my biopsy results....it was called "essentially" normal. Go look up the dictionary def. of essentially.! That will scare the crap out of you! Mine showed "rare" atrophic and "rare" denervated fibers and the dr. told me the same thing, that it was from reduced activity. now, i know that was full of sh_t, but what am i to do.

Well, take care and PM me if needed.

Rgds,

Jamie

 

[wright]

Jamie, may I ask why you think you're going to be diagnosed with ALS? Just because you have some of the symptoms of ALS doesn't mean you have it. From what I understand, you have had some very good neuro's tell you that you don't.

I know you've done your research when it comes to your symptoms, so I'm sure you know how vast the diseases, syndromes, conditions, etc. (whether they have names or not) are that can cause your symptoms. I'm sure you're also well aware that many symptoms unfortunately go undiagnosed.

There are many unknown's out there, which is why medicine and science are not stagnant. We are still learning.

I wish you the best my friend and hope you can get out of the mindset that you are doomed.

 

[awieleba]

Jamiet~

you are right and I am going to see a pysh whom my neuro referred me to. She deals with als pts and non-als pts. She also lost her husband to this dreaded disease, so I feel that she will suit me well. IT is far but I am going. I know something wrong, but want help with the fear. I will do great but when a new sypmtom develops, I freak out and cry. LIke right now my entire jaw from eating is in pain, this is new as of this minute! IT feels sore and painful...strange. I will go take more motrin! I am going to PT so they can have a reference point and I can show my neuro or myself for that matter if I am improving or not. (Ya know, disuse)

Wright & Gina~I finally got a 'debate' on my thread, I feel so cool.

Thank you all for concern. It can be an isolating feeling when you feel so awful and the dr wont confirm it. Meanwhile you decline.

 

[Jamiet]

Wright,

B/c i've done as much reasearch as anybody and to date, everything else has been ruled out, including ALS.

I don't fret over it and if it never turns into that, good for me...but my gut feeling and based upon what is going on, I will be diagnosed down the road with a neuromuscular issue, somehow related to a denervation process.

I don't want to get into any debate wether i have it or something else, i'm over that part of whatever this is. It may get a name or may not, but i'm not going to sit here and die waiting for it to get one....

Rgds,

Jamie