Neuro Found Antibodies: Anxiety High

Highlights Only
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....Deutsche
 
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...
 
Deutsche, 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
 
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!Deutsche
 
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...
 
Dear GermanI am glad to hear that You have Got A letter from ALS ambulance which rule out ALS , and i hope that theHospital doctores Can find out what is Wrong , so You Can have A treatment . Bibi
 
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?
 
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.hugsYulia
 
Yes, Gracely, you are right. All the mentioned tests are reperformed. I went to the same hospital which did the same examinations one year before.The regular findings were two muscles with big amplitude, one of them slightly polyphasic. No spontanuous activity. Whatever that means. The latter I understand.With the outcome they repeated what every report of mine is saying: somatic disorder. My neuro believe it is not.They copied every small thing they can gather about my family background for social anamnestic. I never should have mentioned-
 
I am pretty sure somatic disorder does not cause hashimoto's syndrome and anti-ganglioside antibodies. From what it sounds like, you are in the clear for any MND. Congratulations!!! The bad news is you probably still feel like crap and don't know why. There comes a limit to what they can test for and do medically. When you get there they tend to go with the "all in your head" diagnosis.
 
Then you may be sure it is not MND at least.Neurology is not limited to MNDs. Diseases are not limited to neurology. Hashimoto disease may affect your mood and cause generally crap feeling (Iremember one lady who was working with my mom - she was feeling bad and looking terribly, and barely was able to do her job but after treating her thyroid she become quite alive again).What I mean is that Ok, imagine you will get ALS diagnosis from them. So what next? ALS is incurable for now. Ulnar syndrome is curable (and you had this proven already before). Hashimoto is also controlled disease. Depression is controlled and quite treatable. Antibody analysis is not conclusive at all and often could be misleading. So you need a program to move for all three directions and with the time being you must feel better. *beep* happens, people become mutiply sick, countries get in war, the whole world may get in disasters but... dum spiro spero, unitl we did not died, we may feel better still. Sorry for such emotiona words but... Experienced specialized hospital says you do not have motor neuron disease but mechanical trauma. Specialized ER says you have no MND. Then you must look for just some other reasons for your condition.
 
Dear both,Yes I feel like crap now. They did me the EMG just in one limb. And in the neck. In this limb they found two high amplitudes, but just one corresponding with the sulcus ulnaris syndrom. I don't have a clue, why they did not test me in another limb to see wether those amplitudes are normal or not. I agree with you Gracely.Why should the diagnose me with MND if it is not treatable anyway. They just did no further testing. I am so angry and anxious right now, much more than before the clinic.
 
A usual issue with the doctors is that they rarely speak and explain their thoughts... This creates higher levels of anxiety to ourselves especially to those who like to make google researches about everything.My question to you is: Did you explain to them your fears? While they were making the EMG why didn't you ask them to make all 4 limbs? If you still have so many unanswered questions then it is logical that your level of stress will go high again.I read there is an ALS clinic in Hannover. I suggest you arrange an appointment with them. Before that try to keep notes of ALL your questions and every small important or not thing that disturbs you. Once you are there you ask them everything and i am sure you will get proper answers that will ease your fears and stress
 
Dear Pascal,yes, I exactly agree with you. I cannot follow their thougts. I have antibodies against my nerve system so it would make much more sense to me, that it is all from a polineuropathy. They don't explain to me why it is not that. Because bothsided SUS is suspicous somehow to me.The reason why I did not ask to do all my limbs...I was too nervous. Sounds weird but it is just as simple as that. Firstly I thought, if they do my neck, they would surely pick up anything weired after 2 years of symptoms and 14 month of twiching. They were not really alarmed about MND (though it was on their list), because I don't have twitches to show. And they cannot be stimulated. It is just some popping here and there and not always. The only place where I can whatch by myself is my right foot cave. But it is not always there...It is really unsatisfying for me, to be in the "psycho corner" again. On monday I will call again the responsible doctor. And ask some more questions.....
 
Dear I am really scared once more. German, I am happy for you, that you do not have any evidence pointed to MND! It has been ruled out to 100% from the Emilyomouse main expert in that field.But my problem ist now: They ruled ALS out because there are not any twitches to show?? I have read a lot of times in this forum that ttwitches are not a sign of the horrible disease. For example: I can show my twitches all the time to any doctor... they can also triggerd without any problem. This statemant is horrilbe for me now.Are there any thoughts about it to reassure me ? Thank you all.
 
I have visited 3 specialized neuromusculare centers in Emilyomousey because my twitches get worse over the last 12 months. Not better, not a bit. The doctors told me the following things regarding to twitching: Twitching without clinical weakness is no sign of MND. Fazciculations on the EMG is no sign of MND. Twitching without weakness longer than 4 weeks (not months or years!) points away from MND. They told me that it is not important if twitches could be shown or provocate or not.So this could reassure me. But I am so anxious, I am scared and I am tired from this twitching. And if I read things like that... I am doubting again and again because I am very unsure and vulnerable because of this twitching and cramping. I wish I had not read this statement... sorry...
 
Dear NRWtwitcher,as I told you before, I have atrophie and weakness in left hand. This is another situation. You are already diagnosed with BCFS . No weakness. No atrophy...And of course I also have twitches. They were simply not visible in EMG. But therefore the degenarated muscle...Nobody told me, that twiches are an indication for MND. No one. As I said.
 
Deutsche - I hear what you're saying about not being able to reproduce the twitches for the doctors. I have only been able to show one neurologist a twitching pinky finger. I have never had them show up on an ENG(I have had 2). There is a difference on the board between people who are just so anxious and depressed that they twitch and think they have ALS (which they don't), and the people who have something else, that is BENIGN, that causes the twitches. Most of the time no doctors can ever find anything wrong. You have thyroid problems, my internist also had thyroid problems (low thyroid/hasimotos) and she felt like crap and had a ton of buzzing before they got the treatment right. Thyroid problems can cause twitching and other stuff. The weakness, soreness, joint pain, don't you think that could also be caused by something that is autoimmune? Doctors don't have a good grasp on the total immune system yet. They search for new antibodies every day!!!! If you have one autoimmunity, you could have another. Not an MND. but something that might wax and wane and cause weakness for months or pain or fatigue or who knows. Something that they might not be able to find a cause for and tell you that it is all in your head. I know you must be frustrated, I am, and I know we don't have the same things going wrong with us, but keep looking and try to find something that works. Trust the doctors that said you don't have an MND. Look for something else. Did they rule out something like multifocal motor neuropathy? That is treatable and immune related.
 

Users who are viewing this thread

Total: 1 (members: 0, guests: 1)
Back
Top