new dent discovered

[German2]

Hi,

I know some might be bored of my questions already...but I discovered a new dent today, it is in the foot ankle..right side. I am very anxious about it...
My foot ankles feel weired and hurt last weeks. I think it is from high muscle tone, which I do have in my whole body referring to my therapists.

I had an EMG in the muscle of upper leg, left side (no findings) and one in the upper arm right side (no findings). So if that dent would be from a nasty process, would it have been shown up in the EMG, though?

[Xina535]

Hi - I am sorry to hear this
did you have an EMG of the area near the dent? is it unstable at all?
I would think this is due to one or the other problems you have going on, hashimotos or the high muscle tone...?

[physerv24]

German,

I'm sorry you have been dealing with this for so long. What I can tell you about atrophy is that it follows weakness, doesn't come before weakness. It would not be a small dent but OBVIOUS loss of muscle and, as I said before, you would have marked weakness before the atrophy presented. If this were related to axon loss and death of neurons, your EMG would have definitely picked it up.

I sure hope you can fight your way through this. You do not have MND.

Vince

[German2]

Dear both,

thank you very much for sharing your thoughts with me! Yes, I am into this all for two and half year now. And I live in a very reduced mode. Thanks to vitamin infusion, my fatigue is not every day present, some energy came back, but I do not lead a normal live at all..I just pretend somehow
No Xina, the EMG was not even in this leg. I had one in this leg about half year ago and it was ok. Maybe it is due to high muscle tone, but this problem itself drive me crazy. I know now that what I regarded as atrophy on my hand is a totally tensed muscle structure from neck going down to my fingers. This causes pain, changed even my joints. So the one good news might be - no clear atrophy but extreme high muscle tone, getting stronger and stronger..

Yep, I agree. I don't have MND actually (As one specialist sayed: You don't have it - now). But may I dare to say...it might develop from out of my symptoms...? I am not diagnosed with bfs..

[German2]

But I think it is not a good sign that my muscle tone raised and raised over the time ....?

[German2]

Today I phoned to the neuro who examined me at University last time (I don't have the report yet). I had awful days and nights last time. Total fatigue, slow movements, high muscle tone followed by weak feeling in arms and legs...(curiously especially in the nights).

The doctor told me that my NCV was fine (??). Last time I had a bad outcome in another institution. My EMG showed slight unspecific changes. She said that I have quite high amplitudes. But it would be definitely no desease conclusion come out of that. It coul be that over the years I could develop something, and if I would like, I can have a follow up investigation next year...

Asked for MND she told me that she did not even think about it because my clinical was clean...to stretch again the importance of clincal I mention this..

OK. I feel totally awful. Tried a vitamine infusion regime for a while, which helped at the beginning, did cost a lot, but I did exaggerate it and all got worse....Now I am very confused, have tight muscles, lymphedema in whole legs (which makes it not more compfortable) and weak feeling, almost no twitching. But actually there is no desease...I've heard more than once that there could be a desease approaching. Not a good feeling, but I have to learn to live with it...

[Ghayes420]

Well, you may have a disease coming. Just like I have a 50% chance of getting cancer....but the fact you say your twitching has subsided indicates that the disease you will eventually get isn't related to your anterior horn cells, thus no concern over ALS.
We all will most likely die of some disease but your sx don't point to a disease of the motor neurons.

[German2]

Thank you for your supporting words! That is a high risk Ghayes, but my mother died from cancer, too, so maybe my risk to get cancer is also high. I just don't think much about this option due to my symptoms. I today got the ok of doctor to go into a pain clinic soon. They will try to improve my health with physio, sports and psychosomatic approach for 3 weeks. So I now try this option to get better...I just can't sit and wait...

[Buzznerd123]

.

[German2]

Hi buzznerd,

well, in general I was prepared to disadvantages of my trial and error approach. Can vitamin infusions really cause toxicity?

The infusion therapy had its advantages...My blood circulation came back this time, pain went away, and I had lots of energy again. My fatigue stopped. Now this is all there again. Freezing, now blood circulation, total fatigue, stiffness.

But what went worse during the therapy was the lymphedema which I have since my lung problems in November last year. I myself wanted too much in short time and got me too much infusions from different therapists - my fault. The lymphedema (which got worse I think due to all the liquids into me) causes now heavy legs, weired feeling in legs, pain etc. And I have strong muscle pain. My arms feel extremly weak, but especially when I am lying in bed. So it seems to be a sensitive issue. Because my arms ARE not weak. They just feel weak.

Now I will ask my doc again for a cortison shot therapy, for this helped last year with the lung thing...And I felt like newborn after 250 mg prednisolon...
After all, I am more and more convinced to have something inflammatory, autoimmune, going on....I don't know if the slight neurogenic changes in the EMG go along with this. But if my nerves are involved in the inflammation it could be, right?

[German2]

After a period of gained confidence that it is not what we are all afraid of, I have a total backslide today...
my lower arms did not just got very flat, they are now definitely weak. At the beginning it was a bit coming and going..but now I cannot longer deny it.
My only hope was that twitching went down completely. But now a strong twitching of my back is there...

Ok, I just have sligth neurogenic changes in the EMG - no spontanuos activity But it is not an "all clean"..Now my personal hell has started again. Lost my hope now...