clear atrophie of left lower arm

[German2]

I do not get it yet..(of couse I have it at home, like many other meds, but I will have a clear order to take it from present therapists). Since I take xanax the pain stayed mainly away, but the coordination problems of my hands get worse and worse each day. 10 minutes ago I had a a galvanisation bath of my arms and legs. Meaning that water was powered by electricity. I felt it in my legs but nothing in my arms. The lady who supervised it told me that my sensitivity is already gone...I have the feeling that my arms have just a few days to be alive..
Needless to say how I feel....

[German2]

They send me home from rehabilitation clinic before regular check out. My pain in my arms has got too strong. Hard to bear. They don't want to begin a steroid therapy here but want me to visit another hospital for neuro immunology. They said for Motorneuron desease it would be a very very untypical development. I think in first line they see that the measures have no sucess with me...My pain is really outstanding but thank god changing during the day. Today I limped a bit with left leg...twitching is back, but more focal. I really don't like the hole situation. My thyroid values freaked out, too (hashimoto). TSH is very low and ft3 is under limit. Though I intake it...Natrium went low (under limit which is dangerous and I hope someone will follow up)...Maybe my brain is inflamed? I had several values before, indicating this....

[German2]

since today I have strong indications that herpes zoster is approaching again. (Third or fourth time). That would explain the stronger pain...

[Yuliasir]

oh herpes zoster is such a painful one...

[German2]

up to now I never had pain. But loss of sensitivity of whole upper body...and now it feels like generalized pain. Stiches, burning, tingling and pain everywhere, weakness of arms, esp. left, and left leg..my hole body feels like inflamed. But there is this typical stabbing pain in my breast which proceeded every infection. This is so typical...

[Yuliasir]

If you have recurrent herpers zoster (which most of us may have only once in adult state (not considering chicken pox in our early childhood)), this may mean for me two things - you have weak immune system and you may have neuroinfection as a source of all your troubles, do your doctors consider that as a root case of your recurrent weakness, neurogenic pains etc? Those viruses have affiliation for neural tissue and proacticaly live in it between bouts... Usually they do not cause inflammation, but if immune system is weakened - you may have that one type...

[German2]

Stupid me I did not go to the doctor the last two times. I just took photos of it...In the first case a nurse saw it. It was obviously herpes zoster...second time, too. Third time questionable. This time i have to wait and see. I always had stabbing pain in the referring area before..
But today I have strong weakness in both of my arms. I feel so awkward I can't tell. Here in the reha clinic nobody sharing any thoughts with me. Just the idea I could have parkinson came up once and which mich my own neuro also has on the screen (I know it because he prescribed me an dopmanin medication which I did not take yet...and talked about alpha-synuclein acid which is raised in case of parkinson).
And yes, the head of neuro doctor here recommended me to go to a neuro inflammation clinic. But he did not know about the herpes zoster story.
My own speculation: I have a small selective immune deficency against the ebv virus. This one belongs to the same family like the Herpes zoster, I was told. So maybe I cannot fight this virus...
From immune defect ambulance I was recommended to take an antiviral drug for 8 weeks yesterday. But they won't give it to me here as long as herpes does not break out...
Of course with the weakness in my arms, I again feel like having ALS...And I am frightened..My only hope: neuroinflammation and/or my strong hypothyreose which I have actually plays a part..

[Yuliasir]

Herpes zoster can cause a myelitis (myelin sheet degradation) and even result in paresis (weak paralysis), as it residues in the posterior horns of the spinal brain. It is quite known consequence of recurrent HZ infection. it also causes excruciating pains lasting for months (so called post-herpetic neuralgia).

On my point of view, you should concentrate on that and gain proper antiviral tratement. And of course you should tell ALL of your doctors about all diseases you had (especially about such related as HZ infection, especially if they are recurrent which means immune systemn weakness). I do not know what is primary and what is the consequence, but for me there is clera link between your pains, your weakness and recurrent HZ.

[German2]

Thank you!! Ok...did not know it. My pain in my left arm is so strong that I am almost going crazy...My pain medication does not work (Arcoxia). With Metamizol which they gave me here in the reha clinic, side effects are too strong...Pregabalin I do not want to take as long as I do not know what is wrong.. Prednisolon they do not want to give me because of relevant diagnostics..When I would be at home, I would go to ER..Here I am in the middle of the Bavarian country side...far away from a good hospital.

Meanwhile my pinky and ringfinger are very furry, I have strong problems to use my left hand. Right hand has some restrictions. Is that a possible reaction of myelitis? I am here in an Multiple Sclerosis reha clinic. There are a lot of similarities between my symptoms and theirs...especially the hours lasting speach block in 2013..I am totally confused. I am here whith my kids and thank god they are very self reliant. But I have to coordinate a lot for them and I am failing failing...Up to now it was just my motor nerve of ulnaris. Now my fingers are going numb and uncoordinated during day time...

Would Prednisolon be contraindicated with this potential herpes zoster infection? I was recommended from Charité (renowed hospital in Berlin) to take Valaciclovir off label for minimum 8 weeks. If it gets better, for 6 month...would you walk down this road...?

[leroyb]

Doesn't sound like any ALS case I've ever heard of.

I bet on the ALS-FRS scale you are 40/40 which means you are not mapped on the chart.

As my GP pointed out to me you nay have 'german2' syndrome as i may have 'leroyb' syndrome.

[Yuliasir]

MS could include speech block (I personally knew a person in whom it started with rapid speech block and later with rapid inability to walk, later restored), but in her case it was immediately diagnosed. MS is diagnosed in 6 months usually by presence of specific lesions on MRI and by spinal tap tests results (specific character of spinal fluid), so should you have MS in the list, it should be already confirmed, I think. It is not a mysterious disease anymore and it is really easily treated in most cases.
But MS means overactive immune system, while your case rather implies suppressed immune activity (i suspect that becasues of your recurrent HZ attacks).

As for pregabalin, I do not know why you withold it until diagnosis. It is far less harmful than any other medication, in fact it is a simple neuromediator, similar to GABA, and it is well know as an excellent reliver of neurogenic pains without any significant side effect (you may be a bit dizzy for a week but compared to awful pain and confusion you have now... ). It also has off-label antianxiety action.

Prednisone is a powerful anti-inflammation drug but it acts good in case of overactive immune system, so it is good in case of autoimmune diseases. But if your immune system is too weak, prednisome might be not beneficial for you, that is why your doctors may be not willing to set a prednisone course for you. Viral infections are one of the major contraindications (especially in case of HZ, by the way).

[German2]

Wow, that makes it real clear to me...What I can tell is that my immune system seems to be normal. They got me a big screening in the immune defect ambulance and they summarize that I have a normal immune reaction, just a suspected immune deficiency against Eppstein Barr Virus. With PCR they proofed a former EBV infection as well as HSV 1/2 infection. ANA were marginal. As always, but with 1:160 not sky high...

They recommended sleep support: Melatonin (!) , Tryptophand and others..
and NADH plus Q10; Omega 3 acid, B-complex, B12 plus folic acid
Viral treatment:
Valaciclovir
pain treatment:
low dose Amitryptilin or Lyrica 100 mg just in the evenings if Paracetamol or Ibuprofen would not be sufficient.
stress reduction and pacing

My concern about Lyrica is that it could easily make addicted. Actually I am testing Diclo 100. Seems to work fine.

That is really good to know with the contraindication of Prednisolon. So I should avoid it..

[German2]

..one reason why I am really scared about medication which influences Neurotransmitter:
I have much too much Serotonin
Dopamin normal range
Noradrenalin too less

[German2]

today I realized that not just ma arms get weaker and weaker every day while I lost really all muscle mass of my lower arms. Also my shoulders get bonier and bonier every day...In addition there is a new vibrating in right calf. On off on off...It is not visible but I think this are small fascis...
I really end up in thinking....this looks like ALS to me. And nothing else..
the only fact against it is that my emg in 2 muscles was ok in January. Reflexes are flat.
But I heard of cases were no changes in emg where reported...With the outcome of biopsy ALS could not be excluded..
Sorry for this fallback, but if you almost cannot use your arms any longer, then starting shoulders and legs, fascis, what would you think...

[Yuliasir]

pregabalin does not affect your serotonin level. it is GABA-related and it is a painkiller in case of neurogenic pain. It is not MAO inhibotor and would not cause you serotonine syndrome as far as I remember.

ALS diagnosis needs a combination of clinical picture (asymmetric reflexes, period of extremely brisk reflexes (in case of UMN damae), pathological reflexes development, specific damages on EMG, specific results of spinal fluid analyses, musle biopsy and genetic tests.

we have a fellow with similar issues like yours (pain, atrophy, plain reflexes - on both legs.) - it was raindog. He is now well over 8 ears in that disease and no ALS diagnosis, just peripheral neuropathy.

Your medication list does not suggest any hints of ALS. ALS patients, even with not 100 % confirmed diagnosis, are immediately placed on rhiluzole (rhilutec) - the only drug which now could slightly decrease progression. Yours seem to be stress related and antiviral - pointing out to your actual issues. If you are thinking about ALS, it does not mean you have it.