Muscle Atrophy and Pain Increase

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. ...you mentioned it before Gracely...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...

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.

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 twitchingI get this on and off vibrating in my right leg, which I cannot see but think it is invisible small twitchingmy hands get too clumsy, to get my clothes onlast time I was crying, I realized there was a stop to get enough air...my legs went in an about to cramp modeI got these strong gorge spasms yesterday..even with taking Baclofen since 2 days most things get worse...no stomach skin reflexes (extrapyramidal sign)

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...

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.

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

Thanks Gracely, 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...

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.

....hm, dear Gracely, I heard of it. But to be honest it sounds different to me, then what I have...After some more research, I would estimate my body situation as a generalized Dystonie? That might be the reason why my neuro speculates parkinson....Whatever that means...The pain in my arm muscles, the pain in my neck and the growing difficulty to hold my head in a normal position...The contracted foot muscels which make insoles neccesary..the contracted intercostal area..the gorge cramps..That is all due to my high muscle tone..

Dear Deutsche -I wish I could say I have some answers for you, unfortunately I don't. But I have been reading your case and wanted to let you know I am praying for you. Happy thoughts coming your way!Pete

Dear Pete,thanks a lot! That is a lot more then other people surrounding me do for me. Actually I am without pain (due to musclerelaxing meds), but soo *beep* tired. But it is good to know that pain can be reduced...I am also tired of my own case. It is so exhausting. Now I am waiting on the next check-in to hospital, hoping this time it is a better one..

Hi German I follow and understand your pain and fear. I have focal dystonia in my Right hand have had it for 14 years. 23/5 i am going to a dystonia-clinic . I have been to another dystonia- clinic before i discovered The twitching and i tried botox , but then i ad pain in my Right arm and Got a frozen shoulder . This Was in 2012-2014. The twitching started in 2014 When my shoulder Was Healed. Now i have pain in my left arm and a frozen shoulder in left side. A now i have athrophy in both shoulders and my back. The reumatologist verified this but Said it could be from The frozen shoulders . But i know i didnt have it before I saw a neuro and i hade a short clinical and sad i have to wait for The dystonia clinic in May. He verified The athrophy but Said The same about frozen shoulders . Have You talked to a neuro about dystonia ?

Hi Bibi,no...not yet. It was a microbiologist in a German forum who said, that I would have dystonia...and I have to admit, it could be fitting. For me it is not clear wheather I do have atrophy at my back or highly contracted muscles...I know that my neuro is thinking about parkinson/parkinson-Syndrom..he did not say it explicitely. But he prescribed me a dopamin medicationBut I prefer to wait on the tests in the clinic where I plan to go. Dystonia belong to their spectrum as wall as neuroimmflammation. Up to now there are - thank god - just minor neurological signs. Not a big hype...so I hope it is something slowly progressing also in the future...Oh my god Bibi, whe share a burdon...Thanks for answering.

...I have forgotten to mention that I have the Chronic Fatigue Syndrom and this can also cause a lot of immune trouble. So it is hard for me to seperate all the symptoms...beside my Hashimoto..

I am in hospital now...they did a lot of tests. Including lumbar punction again..no outcome yet..no emg yet. I thi k they do not plan an emg.....Beside my stomach skin reflexes glabella reflex is missing. Does anyone know what this means??

Hi,really do not know what does it mean if glabella reflex is MISSING. Exacerbated glabella reflex (when patient cotinues to blink at every tap on glabella) is used in Parkinsonism diagnostics, but if you DO NOT BLINK at all - I have no idea what it could be...UPD. I dig a bit and found that missing reflex is detected in peripheral neuritis of fascial nerve (local inflammation).Hope this can help.

As far as I could remember I blinked all the time. But the young doctor explained his boss it could not be evoked.

If you blinked all the time, it means you have positive reflex, and this could be due to your too high serotonine level. It occurs on parkinson and in persons taking anti-dopamine drugs or SSRI for a long time, but you said your serotonine is too high and dopamine too low - so this is probably a reason.normally patiens can blink for several times but then response fades (it is normal glabella reflex). If no blinks occurs at all - it is negative, if patine blinks no matter how many times doctor tap on glabella, it is positive reflex.

It was retested again today..Reflex was positiv...I have serotonine high, dopamine normal, noradrenalin too low..since lumbar punction I go crazy from neck pain and headache...I am home for weekend but I think I have to leafe for hospital again....I feel really really sick...

...yes but it is the fourth day and it is getting worse. It comes from my neck..I feel really really sick. Don't know how this all ends.