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Re: clear atrophie of left lower arm

PostPosted: April 16th, 2016, 11:34 am
by leroyb
Riluzole is worse than useless from what PALS have told me.

ALS is associated with low serotonin levels not high.

Re: clear atrophie of left lower arm

PostPosted: April 16th, 2016, 12:58 pm
by German2
Thank you both...I have low noradrenalin level. Lyrica seems to reduce noradrenalin, Glutamin and substance p..Therefore I am a bit reluctant not to further confuse my neurtransmitter. But maybe I am just too careful.

And it pushes weight, als the mirtazapine which I am taking. Therefore my neuro did not recommend it to me...But I am thinking about it.

Well, I have strong atrophy and pain in lower arms,
weakness of left arm (clinical proofed, but they did not write it in the report as always)
coordination problems in hands
flat reflexes
sometime burning pain
neurogenic pain
twitching (low level)
vibrating on and off

I don't know what to to
go to a further hospital as they recommended me here in reha clinic (maybe also to try cortisone) - I think I am obliged to to so to get my invalidity pension. Actually they labelled me as unable to work until further diagnostics.
Trying Valciclovir regarded as as only therapy strategy from immune defect ambulance
walking further down the road of alternative options to fight the virus (I have more than one option on my list - Nosode therapy, enzyme therapy,)

I am so clueless what to do, for I feel worse each day. Can't do my housekeeping anymore...and I am emotionally completely unstable due to situation and hypothyreoditis.

Re: clear atrophie of left lower arm

PostPosted: April 16th, 2016, 3:46 pm
by leroyb
Lyrica is a glutamate antagonist but a much more tasty and effective one is alcohol so enjoy a couple of beers a day
or wine if you prefer. The resveratrol in wine will help reduce systemic inflammation as an added bonus.

Re: clear atrophie of left lower arm

PostPosted: April 17th, 2016, 2:43 am
by German2
...oh, that is the reason why....;-) To be honest, wine in the evenings help me to feel better anyway sometime.

Re: clear atrophie of left lower arm

PostPosted: April 19th, 2016, 7:20 am
by German2
Today I went to the ER. I could not stand the pain and the feeling of paresis in my arms any longer (esp. at night). Most parts of neurological examination were ok. Just swining (Rombaut) and no stomach skin reflexes in no level (extrapyramidal sign) as well es documentation of twitching under my left foot.
They will get me as an inpatient soon. They are specialized in neuro inflammation. I should try Limptar....but I know there are warnings about this drug. So I will start with Baclofen today...or give Tizanidine a try first..

Re: clear atrophie of left lower arm

PostPosted: April 19th, 2016, 11:58 pm
by Yuliasir
well, not being a neurologist, but on the basis of what I read about diagnostic reflexes, I can say that pyramidal damage does not correlated with flat (diminished) limb deep tendon reflexes you report in your previous posts.
Extrapyramidal or pyramidal damage is a damage of central motor neurons and should mean spactic paralytic issues and hypertonus and hyperreflexia, not weak pralysis and loss of reflexes your report. Typical extrapyramidal sings are convulsive movements (athetoses), pendulum-like involuntarily hand movemets, catatonias (involuntary frozen posture) etc. Examples of extrapyramidal symptomes may be typical clinical pictures of Hantington disease (chorea, st. Witt dance), Parkinson disease (tremors, rigidity), catatonic issues happen to people with schisophernia (due to imbalance of dophamine in the brain) and side effects from neuroleptic drugs.

also other cases (other than central and spinal brain damage) resulting in visual abscence of abdominal skin reflexes are

- too nervous and strained patient (I can imagine you are quite nervous due to pain and all that situation)
- patient with a belly, non-trained muscles of abdomen (ladies of our age are ususally of that type), patinet with extra fat on the belly
- patient with abdominal operations history (in our case most probably is Cesarian operation)

I also remember you complained for feeling of pressure in the chest like it was too tense around. If your diminished abdominal skin reflexes are not an error due to aforesaid reasons (overall nervous tension, belly conditions, Cesarian or other abdominal surgery etc.), then one may fit another pointing towards local spinal damage at toracic level (it correlates also with the weakness etc. concentrated in your hands, not legs).

That is just to give you another picture compared to extrapyramidal damage.

Re: clear atrophie of left lower arm

PostPosted: April 20th, 2016, 5:20 am
by German2
Hi Yuliasir,

No Cesarien, Yes ;-)
Well, my neuro already told me before, that I have extrapyramidal signs and he told me that this would come from the neuroleptikum I have taken...but this was two years ago..and I really did not ask which one..;-(
It is hard for me to speculate on the reasons. Last time, reflexes were now middle brisk again. Meanwhile I don't give a *beep* to that, for my reflexes change between flat and middle brisk..I think depending on thyroid hormone level. As long as I have no hyperreflexia...

I took Baclofen yesterday and indeed my pain goes away if I take muscle relaxing stuff. But I feel dimmed and uncoordinated with it. No solultion for me on the long run.
Maybe I'll try Limptar next. I think in the US it is illegal because of deadly cases...I Germany it is available..

Re: clear atrophie of left lower arm

PostPosted: April 20th, 2016, 5:29 am
by German2
Checking Extrapyramidal Syndrom (as he diagnosed me one time)...I found indeed Parkinson fitting my picture. This is what my neuro seems to think I could have...therefore he asked me to take a Dopamin product. But I think it is usefull to diagnose than just to make a blind flight...
If it is Parkinson...than ok. I also will be ckequed for Stiff person in hospital. mentioned it before Yuliasir...The idea came up with this neuro in ER due to benzodiazepine immediately improved my status quo. Pain stop. Tension stop. But it is no longterm medication...

Re: clear atrophie of left lower arm

PostPosted: April 20th, 2016, 8:18 am
by Yuliasir
Yez benzos are not long term solution but at least you may take them in cources under supervision and use other means (like muscle relaxants) in between.

Re: clear atrophie of left lower arm

PostPosted: April 20th, 2016, 9:36 pm
by German2
Well, I`ve got the strong feeling that my sickness has broken out anyway...And I am about to think again, it is ALS:
my shoulders hurt and have got bony. My husband did agree..the shoulders in the hole were twitching
I get this on and off vibrating in my right leg, which I cannot see but think it is invisible small twitching
my hands get too clumsy, to get my clothes on
last time I was crying, I realized there was a stop to get enough air...
my legs went in an about to cramp mode
I got these strong gorge spasms yesterday..
even with taking Baclofen since 2 days most things get worse...
no stomach skin reflexes (extrapyramidal sign)

Re: clear atrophie of left lower arm

PostPosted: April 22nd, 2016, 5:53 am
by German2
Spastic of my left hand today (4th and 5th fingers got into weired position..).I do not know what to do or say. I am just sad...and that despite of taking baclofen which is against spasticity...
Isn't it that - together with the twitching - I have signs of upper and lower MN then? Or is it possible that this derives from sulcus ulnar syndrom? I read that spasticity is always from CNS or spine..

And I have forgotten to mention that my Romberg was slightly positive...

Re: clear atrophie of left lower arm

PostPosted: April 22nd, 2016, 10:29 pm
by Yuliasir
Did tehy left in this position? or then relaxed? I know you have extremely bad blood circulation in your hands, so it often happens as a short attack in ishemic tissue (I have that with my toes). And of course baclophen would not act in that case.

Re: clear atrophie of left lower arm

PostPosted: April 23rd, 2016, 12:55 am
by Yuliasir
Slightly positive Romber test means noting (except maybe B12 deficieny). I have that sign too (swaying when standing with eyes closed) and I do not have any MND or so. It is natural to have a bit of loss of equilibrium when your eyes are closed.

Moreover, really positive Romberg indicates nothing more than either sensory polyneuropathy, or, which may be our case, chronic inflammatory demyelinating radiculopathy. So it poins out of MND you fear of.

About CIDP ... neuropathy

seems like most of your symptomes fit, including EMG results, burning pains, atrophy and flat tendon reflexes. Maybe you can look in this direction.

Re: clear atrophie of left lower arm

PostPosted: April 23rd, 2016, 4:43 am
by German2
Thanks Yuliasir, you are right...Romberg seems to be not a dangerous thing..

The spasticity yesterday was it, what made me concerened. And that it gets hard to keep my head on my neck...My hand was somehow split up. It is hard to explain and I could never do this position in a natural movement ;-) That was all after taking Baclofen, also the gorge cramps. So maybe a paradox reaction. As I learned from my German pnp group spacticity is quite common among them...Most of them take baclo...I took a Xanax and all fine...but this is known as best med against spacticity ever. Though it is no long term med...

This night I had again a sllight personal horror trip. My arm was not able to move when I wake up!! This phenomenon lasted about 2 minutes or so...It was not numb. It was just immobile..Ok. I have that from time to time...It is always a very special gift of my sickness..First time that happened was about one year ago..

The reason WHY I got all this is interesting..after 6 years of symptoms. I know that my muscle tone was affected first time 1996 after that infection where I stayed in bed a year or so....And I speculate it never restored completely. 10 years ago physions complained first time about my too high muscle tone. Since that time it went higher and higher and higher..Then it started to manifest with real problems including herniated disc...So it seems to be a very long term development.

I found a hospital which seems to be interested in my case for I had this heavy brain surgery when I was six. It is specialized on inflammatory neurology. They plan to do everything from scratch. Also spine tap...

Re: clear atrophie of left lower arm

PostPosted: April 23rd, 2016, 10:04 am
by Yuliasir
as for your little horror trips - do you consider so called parasomnias? My daughter had it during heavy stress, and I had it this winter first in my life (fortuately I knew what is it and it helped me to keep some criticality). I mean usually you wake up mentally but can not move partially or wholly - usually up to few minutes. Often it is hard to breath and usually one feels a lot of horror... (I had a visual hallucinations too). It is a kind of sleep disorder.