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about wright

we are so fortunate to have wright on the forum.
he is willing and gives his time freely to help people understand there symptoms,emg results and soforth.
something most doctors dont do.
i have learnt alot from his answers to other peoples questions.
i can understand how sometimes it can be frustrating for him and he looses his cool.
we have to remember all of this and take it into consideration when we ask a question or get a reply we do not like.............he is only human like the rest of us;-)
take good care.
caroline:-D
 
I don't think Wright lost his cool at all. He handled himself quite nicely as he always does. I believe it was someone else that lost their cool. I too am thankful Wright is here lending us his compassion and knowledge.
 
sorry,i did not mean lost his cool as in lost his temper.
i meant get a bit annoyed sometimes.
i have seen wright come through some major arguments with his dignity intact.
sorry if my choice of words offended you.
i am a yorkshire lass in the uk,we use some words differently here.
take good care.
caroline:-D
 
Correction Wright

Most of your summary of my symptoms/problems are correct except:

1.) My EMGS. None of them were clean. The first one I had by just the local Neuro in March of 2007 showed "increased insertational activity" in one major muscle.

2.) The 2nd EMG I had in June of 2007 by the ALS expert, Dr. Leo McCluskey showed Increased insertional activity in 3-4 muscle and low amplitude. His conclusion was possible mild myopathy.

3.) Muscle biopsy in July of 2007 showed scattered atrophic fibers with no evidence of grouping or denervation.

4.) Last EMG, Nov.1 of 2007 again showed increased insertional activity in 3-4 muscles.

As you can see, none of the test were clean. In addition, Dr. McCluskey wrote I had a positive Hoffman's sign. The 3rd Neuro confirmed the Hoffman's sign finding along with reporting 3+ reflexes throughout.

Combine the above with that fact I do have muscle twitching now for 2 straight years along with significant muscle atrophy is not good.

I dont want you throwing it out there that nothing is showing up on any of my tests. They just cant put the pieces together. You have to admit, some if not all the information above are qualities of ALS. And when no doctor can tell me what IS wrong with me I have to try to figure it out myself. This is the disease that the above points to and that is a fact boss...
 
Welcome back Lou and please keep an open mind as you read my reply.

I could swear that you told me that your EMG's were normal except for the first one. I apologize for misunderstanding you. Could you send me the results or post the results on here so I can see them? I'd like to know exactly which muscles showed increased insertional activity and which ones had diminished MUP's (it's the diminished MUP that indicates a myopathy).

Increased insertional activity indicates denervation and/or reinnervation. This can be seen in many conditions other than ALS (e.g. axonotmesis, neurotmesis, neuropathies). Considering you didn't have increased MUP's in the EMG and you didn't show fiber type grouping in your muscle biopsy (both of those are signs of reinnervation), the increased insertional activity was more than likely due solely to denervation.

While ALS is progressing, both denervation and reinnervation would be seen . . . and that is not what was seen in any of your tests. That obviously points away from ALS. The other things that point away from ALS is the absence of spontaneous activity (i.e. positive sharp waves and fibs) and the absence of large MUP's.

The muscle biopsy: scattered atrophy is indicative of denervation without reinnervation. I promise you that this points away from ALS, too. Hallmark signs in a muscle biopsy in someone with ALS would be both scattered atrophy along with fiber type grouping. Later on in the disease there would be group atrophy (not to be confused with fiber type grouping) . . . but that would be seen when the muscle is close to being nonfunctional. Your scattered atrophy is something that is seen with a peripheral neuropathy or myopathy for example.

Having reflexes of 3+ in all limbs does not necessarily mean anything is wrong (especially when seen in all limbs). Some people have increased reflexes, especially people that are thin and you said that you are naturally thin. What would be more alarming is if the reflexes were asymmetrically increased to at least 4+. Hoffman can also be seen in normal individuals, especially if it is symmetrical.

Your twitching has gotten better Lou. That's a good sign. Given you have muscle atrophy, it isn't surprising at all you have it. As you well know, muscle twitches can happen for many reasons.

If you have muscle atrophy as bad as you say it is and you are still functioning, that points away from ALS too.

I won't argue with you that some of what you have is consistent with ALS, but there is more that points away from it . . . so much more in fact . . . that it is my opinion and the opinion of your neuro's, that you simply don't have it.

This is what I think you should do: get one last EMG in all of your limbs. It's been long enough . . . and you seem to be progressing . . . so any neuro would be justified to do it. I would also suggest seeing a rheumatologist because you might have some type of autoimmune syndrome.

Be proactive Lou and be aggressive. Make your physcians figure out what is happening to you and be persistent until they do. This is your life and you deserve to get better. There are a lot of great docs out there that would be more than willing to help you. You just have to find them.

Take care and remain hopeful that you will get better. I truly think you will.
 
But Wright...

all the docs said there were no signs of denervation. NONE
 
wow Lou,

all your test's from emg to biopsy are exactly what mine are! and i have the all over muscle loss, worse in some spots! It is strange that some of us (the un-diagnosed) have sooo many of the same symptoms and test results but cant find out what it is? It must be something because how can so many of us have the same thing and same results and told no Mnd? there are a few of us.....what does it mean...... I dont know, but I just bury my head in the sand and I am pretending I am ok untill I am not.

you can pm me if you want. we have alot of the same...

ps. I am confused on denervetion thing. I thought the 'atrophic fiber' thing I have was a form of deninervation when I researched it. I asked the als doc if i had deninnervation, she said no.
 
One thing I have learned in my own efforts to research different possibilities based on my symptoms is that there are hundreds (if not thousands) of possibilities out there. The body is tremendously complex, but there are a limited number of ways we experience symptoms (fever, cough, twitching, soreness, weakness, etc...). Zenarcher once used a great analogy of a dead telephone to explain the difference between ALS and MG (In MG the phone is unplugged. In ALS the phone lines are gone). In both cases the phone is dead, but for different reasons.

I also like imagining a symptom like twitching to be like static or snow on a TV set (Though with digital broadcasting and cable I wonder if my grandkids will grow up in a world without snow). We could all have static on our TV's, and even call around the night of the big game to compare, ("Do you have snow?" "You mean like blizzard snow, and no picture, or occasional snow across the picture?"). The cause for each of us could be different: bad cable, crappy antenna, kid has the microwave on, station in our town is having issues. The symptoms would remain the same.

The diagnosed process attempts to sort through the symptoms and clinical findings . Doctors start with the usual suspects, because, based on the very definition of probability, that's what its most likely to be.

It becomes challenging when doctors have to wade into deeper waters of rarer disorders, or those requiring knowledge of multiple specialties. First of all, even in a large practice the Dr. may never have seen the disease first hand, let alone diagnosed multiple cases of it. Second, because they are very uncommon or not completely understood, black and white diagnostic tools might not exist. That is why many of us end up at academic medical centers where they see a higher volume of unusual cases, and where there is ready access to multi-disciplinary teams and the latest diagnostic techniques.

Finally, illnesses do not always play ball. Just because something is not a "presenting" symptom or common finding doesn't mean that it never occurs with the illness, or that presenting symptoms/findings of one illnesses don't occur in rare examples of other illnesses. I like to take the positive spin on this. I saw an abstract the other day about a couple of cases of MG where the patients involved also had symptoms of tongue atrophy and fasciculation. So if the doctors are telling you there are holes in the diagnostic puzzle that point away from ALS, I would take that as a win (especially if the specialist has ALS/Neuromuscular disease experience).

I'm sure if a bunch of us were grouped together there might be a fascinating paper in all this. If not, we could all at least all go out to a nice place to eat or a show afterwards.

Robert
 
OK guys this may sound totally bogus but everyone needs to watch HOUSE. It's about a bunch of docs that look at a patient presenting multiple symptoms, none of which point to one thing. Watch it a few weeks and you might get an idea of what your docs are dealing with. I know its TV and fiction but where do you think these writers come up with the ideas for the maladies for the patients. Must get it from docs or medical journals or maybe from forums like this. Just my thoughts for the day.

AL.
 
or drink.........hello!

Or you could watch medical mysteries or mystery diagnosed. However from my vast array of symptoms and I have researched every illness, 7 out of 10 cases, I guess it before they tell it. LOL and kinda sad...
 
Would it be possible for you to transcribe exactly what is on your EMG (word for word)? I'd like to see exactly what the neuro wrote. Sometimes when relaying information, things get lost in the translation.

If your neuro said that there wasn't any evidence of denervation, then I believe him.

Evidence of denervation:

1) Increased insertional activity . . . but there is another similar term used to describe what happens when the needle is first inserted into the muscle and I'm thinking that's what is being miscommunicated here.

2) Positive sharp waves, which show active denervation (you had none)

3) Fibrilations, which also show active denervation (you had none)

4) Increased MUP's (either enlarged or prolonged) which show reinnervation as a consequence of denervation (you had none)

5) Scattered atrophy as seen in a muscle biopsy . . . BUT AGAIN . . . this could also be due to a myopathy (you had this, but again, it was interpreted as a myopathy)

6) Fiber type grouping as seen in a muscle biopsy, which shows reinnervation as a consequence of denervation (you had none)

7) Group atrophy, which shows severe, active denervation (you had none)

Considering there is room for misinterpretation of "insertional activity" and you didn't have any other signs of active denervation or reinnervation, I can certainly see how your neuro said that there was no evidence of denervation and labeled your condition as a myopathy.

I will be able to definitively help you if you can get me the results of your EMG and muscle biopsy for that matter. If you don't have them, you can simply call your neuro and have them sent to you. Again, I'm trying to help you Lou.

Take care
 
April- it's funny i'm always guessing the diagnosed before the end also.

Al- I love House, I didn't start watching it until about a year ago.
 
I also love House

And for the record they have medical consultants that work on the show. The research is exhaustive and the fact checking is meticulous so although it is a fictional tv show, it is medically accurate. ;)
 
We watch House faithfully and have never missed a show. I have found a few quite disturbing though!
 
Apologies for making this thread highjack complete, but I enjoy House as well. However (And this will reveal a lot about the members the members of the board who understand ;) ), I have a hard time not thinking of Hugh Laurie as the foppish and dimwitted Prince George.

Robert
 
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