Back from Neuro - PNP

[Nytviolet]

OMG! As anxiety-ridden as I am, I had to chuckle at the phone call from your aunt!. Well-meaning relatives (who are trying to help) can often say or do the wrong thing. It's very tempting to be angry, but they have NO CLUE what we are going through. I had a similar experience with a coworker recently. I won't go into details, but after she spoke, I felt that sick, sinking feeling that comes with panic onset. Been there.

What drives me crazy is a phone call of my aunt yesterday. She saw a tv show and told me that they have found a new desease for which they are fundraising actually...And she immediately would have thought of me..".You also did have swallowing problems and muscle decline, right??" GREAT!! That saved my weekend!!

I tried to explain to her that this is exactly my biggest fear, and I explained oll over again and again that this is no new desease but the desease which killed the mother of my aunt's daughter in law a few years ago..- So she might know it.."Oh I have forgotten", she said."But maybe you don't have that." It is not her fault.

But I don't know how to stand the one and a half week until hospital appt., even not to think about the investigations itself. What if they find nothing? What if they find my biggest fear desease....?

[German2]

Hej German

I hope That You soon Will get some good answers ! When are You going to The hospital ? I am waiting for EMG , i have not Got an apointment yet , waiting for A letter. The last days i have have pain in my Neck and in The tendon under my left foot which is twitcing All The time . But today i went for A Walk and And A bikerun together with my daugther , i have been " away" too long.. , i must try to go on with my life during this twitcing ..
Bibi

Dear Bibi, my appt. in hospital is next week. I have a stay there...I had also my hotspot under my foot. And it is still twitching very often. My atrophy is in other places though...It is good that you just try to enjoy!! Keep us informed!

German2

[German2]

..I have forgotten to mention that my neuro and my rheuma doc as well es my physio are sure I have a compression syndrom called "thoraccic outlet syndrom". This is caused by the first ridge..Though my NCV is totally normal, in the x-ray it is visible...I hope this gives some explanation for my weakness in the thumb.
I have so many building lots that no one can tell, how they influence each other..

[muppetdog]

Ladies - I also get those twitched in the arches of my feet, sometimes they even pull and hurt like a pre-cramp, or a stinging sensation. I learned from a yoga instructor that you can get an ordinary tennis ball and just step on it and roll it around down there. You don't have to have any certain technique, just skwoosh it around and roll it however it feels good. Do it for a couple of mins under each foot and switch back and forth. I have found this will take a lot of the pain away and sometimes make the twitching go away. No promises, but give it a try. At least it feels good.

German2 - Good luck with the hospital stay.

MD

[German2]

Dear Muppetdog,

thank you. Actually I am expecting the worse...My thumb gets weaker and weaker every day. And I have those GM1 antibodies, which also appear in MND. I don't see any chance for me to get save out of the story....

German2

[muppetdog]

thank you. Actually I am expecting the worse...My thumb gets weaker and weaker every day. And I have those GM1 antibodies, which also appear in MND. I don't see any chance for me to get save out of the story....

You can't think the worst until you have all the facts. Just see what they say at the hospital before you go condemning the rest of your life. A year from now you might be just fine and wondering why you were worrying so much. Just tell them at the hospital what is going on and see what happens. Tell them how much this effects your life and that you need answers.

MD

[German2]

Dear Muppetdog,

I can't shut my eayes from the truth. I was praying so much that it is not true that my mother had evil cancer...and she died from it when I was much too young. I am not wanting anything for myself but my kids are just so small.....it is so unfair....Knowing I am not the only one in that situation. There was already TDenver with a small doughter...

[TwitchyDoc]

German2, I cannot go through our PM conversation and maybe I told you that already but anti-GM1 antibodies are very common in MMN (multifocal motor neuropathy) which typically affects upper extremities. No need to say that fasciculations are common. And Anti-GM1 are very rare in MND, less than <1% according to chronic motor neuropathies data. CIDP is another option or even AMAN...

Feel free to PM me again, I am considered a terrible fearmonger who only scares people and never helped anyone, so I do not want to discuss anything publicly.
Docen

[muppetdog]

Feel free to PM me again, I am considered a terrible fearmonger who only scares people and never helped anyone, so I do not want to discuss anything publicly.

TwitchDoc - You should always put down what you know. There are those of us out there that like information about what is going on. Someday someone with German2's symptoms might be searching this site and get some help from your suggestions. I am all for sharing of public knowledge if it helps people on this board now, and in the future with these types of symptoms.

MD

[German2]

Dear TWichydoc,

thanks a lot for your helpful PM to me! That gave me reassurance from you very good insight knowledge. I was observed from MND specialst 3 weeks ago and nothing could be found. Knowing that there is s.th., maybe a MMN as you told is what I have to look for!
Thanks a lot!

German2

[German2]

Today is my final day before checking-in to hospital. A few days ago I received my second "letter of release" from als ambulance. No signs of anything...rule out of als.

I can hardly believe because my left hand gets weaker and weaker everyday....I am very scared about the findings in hospital.
How can I believe the experts if my whole body hurts (joints, muscles) that there is nothing..? I don't have BFS...

[Bibi]

Dear German

I am glad to hear that You have Got A letter from ALS ambulance which rule out ALS , and i hope that the
Hospital doctores Can find out what is Wrong , so You Can have A treatment .
Bibi

[Xina535]

A second letter is great news! We are all hoping for answers and a better treatment plan for you!

[German2]

Hello,

I am back from hospital now...I don't know what to say. At first they listed MND as one of the suspected dx. Of course I was very excited in a bad way about that...They did not tell me any results all the days until this afternoon: They found a both side sulcus ulnar syndrom. And the rest would be somatic disorder...
NCV was fine, MEP was fine, in EMG I have seen 2-3 things in the report, which were not regular. But they say no signs of MND, no spontaneous activity of muscles. Clinical was normal, just a positive Hofman Tinel Sign (obviously corresponding with sulcus uln. syndrom, as far as I can see from dr. google). Maybe I will come back to the EMG experts with the findings in the Questions section. Today I am just too bushed. I can not say that I am happy. Because I know there is s.th. and they did not find. They relied much on all of my former reports.

What do you say?

[Yuliasir]

German,
first of all you contradict a bit: you say you had MEP, NCV, EMG - and all that was fine (except minor irregularities on EMG). So I suppose you HAD all those tests re-performed in the hospital.
At the same time you say the hospital people relied mostly on the previous reports.
So - did you got all tests anew?

if yes, and if all results point out of MND finally, then you must comnsider also two clear reports ofr specialized ambulance saying you are clear and you must be sure that you have a) mechanical trauma causing your hand weakness etc. b) mood disorder causing the rest (especially your bad feeling and depression).

both issues are tretable as you may know.
MEPs, NCV, EMG are highly sensitive and usually as you may see even on this site will spot suspicious findings fare before any significant clinical signs will develop. Your doctors may miss - I do not know what - hormonal disorder, autoimmune disease, metabolic disease but really not MND...
not several times in the row by different doctors.

on the example of severtal fellow members we can see that somatic disorders may be very hard, almost disabling (look for SuzyQ and Chrissie stories, they are amazing) - but they are curable.

Mechanical trauma like your syndrome leads to the same weakness and even atrophy as ALS or other MND. But it is reversable.

hope you could manage this.
hugs
Yulia