Neuro Found Antibodies: Anxiety High

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Deutsche

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Hi there,because of my nerve pain I went to neuro yesterday. He already has found antibodies against my nerve system. In a table I saw that they can be found with Guillan-Barre Syndrom, MND and MS. So my anxiety level is high as hell. My neuro said, I have a PNP due to GBS, though it is more a chronic version (his dx is due to symptoms). He is sure, it is no MND. And he says my desease is on the scale inbetween BFS and MND. And it can be cured. He also think I have atrophie on hand (in a place where I cannot see one). The nerve pain and numbness kills me..I don't know exactly how to move on. He started with light cortison several weeks ago and will check the antibodies in five weeks again. I just try to calm down myself that my symptoms are not fitting to MND. And that it all started several years ago and no weakness yet. Though it is not BFS hope that I still have a future...Please keep your fingers crossed for me that all comes to a good end. It feels horrible...
 
That is not bad news!!! Actor Andy Griffith had Gillsin Barre and fully recovered and returned to acting (this was 30 yrs ago). Your neuro has said "def not MND"... What blessing. I don't know I'd you take anything for anxiety, but you may wish to ask for an Rx, because the pain of physical symptoms will make stress MUCH worse, which in turn aggravates symptoms. There's NO REASON you shouldn't make 100% recovery. I will pray for you --you should ask Him for peace and comfort as you get through this. This will pass...promise.
 
Dear Nytwister,Thank you for your words..I am not completely sure about this diagnosis, because I have a chronic syndrom, lasting for years. I have heard from my hashimoto doc that hashimoto is sometimes accompanied by kind of GBS forms. And for my peace of mind I need a electophysical proof of this dx. So I asked for a place in hospital. The asked my for my reports and now I have to wait. But hopefully there is a treatment..
 
Hi thereI just want to give you an update about my "special case". I took Cortisone for 4 weeks (against antibodies against nerve system). The effect was that it went worse day by day...In the end I had to go to emergency department of hospital. Every muscle in my body hurt..I could not walk any more. I had a very intense neuro exam there. Everything normal apart from one hyperreflex in my right biceps. The neuro asked me if I had a herniated disc in throat spine...and yes. I have...And apart from a slight restricted nerve conduction in both of my legs (which I have been told before). But no other odd signs.I have to admit that my local neuro sees atrophy, but he said "no hair of my head thinks this could be MND". But ok. Cortisone seems not to be helping...Now I stopped it and today I had a 4 km walk again! So I tried not to be too worried. If it went worse and then it went much better again, that is a good sign to me!Anyway, I have now an appointment in hosptial in the neuro department to make more diagnostics...That is quite a long time to wait, until the 9th of September. But I try to be positive. Symptoms still wax and wane. Went bad and then better...After now one year of twichting. So in my case it seems to be true, that, even if it's not bfs, it does not mean it has to be mnd though...
 
Hi Bibi,thanks for your words...yes, actually I am ok again. My last year was so scary, and then, heading the one year mark, I was so sure that I am getting out of the story. After having my hashimoto diagnosis. But there seems to be always a small devil on my shoulder telling me: You're not. I have some new present for your...I took cortisone and my doctor was telling me, after that you'll get better. And at the end of this medication, I could not walk any more..And I thought, ok. That is the end of the story. And now, 4 days off the medication, I feel pretty fine again. I feel I could have a run with no problem. So It is defenitely not the end of my story ;) My problem is, that I react paradoxly on most of the medication. The ones that should not help (Rheumatism meds), help. And the ones intended to help (cortisone), do not. In my bad period, the als specialist I already went to and who ruled out mnd, gave me a new appointment. And I have an appointment in hospital. But now I now, it was just the wrong medication. But of course I will have it all rechecked again. Bibi what is your experience up to now? Did you have some further diagnostics?
 
Hi German Thanks for asking me ! I have only seen one neuro Who made A clinical that was fine , but it was only 2 weeks into this .i have been seeing my Gp , And she thinks that it is All anxiety and put me on MIRTAZAPINE for sleeping , only 15 mg , and it really helped me sleep better. BUT i still have Lots of fascikulations , Many i my feet and leg and some in my arms, back , face......My Right leg feels " Heavy" and stiff everytime i start to Walk , but after walking A While it gets better , i dont understand this. The last 2 years , before start fascikulations , i have had A " frozen shoulder " i had A lot of pain in my arm and could not lift it , because of The shoulder. I have Got injektions in my shoulder with steroids and it helped for The pain , but not for The movement. It is known that only time Will make this condition better, and it is much better now.after my shoulder problems i had pain i my back in The same side (Right) , and in my hip. But now i have " only" fascikulations , A little pain in my left arm and my Right leg muscle above my knee contracts and feel stiff When i start to Walk. And A new thing , that makes me so scared , for last two Nights ,my jaw jerks When i am going to Fall asleep. This Night i wasnt sleeping undtil 6 in The morning because i am so afraid that these jerks are A symptom of You know what. I am going to see A neuro 28/8 but i dont know How to go on with this fear until Then, I try not to Think of it and be there for my family , but i feel so scared and depressed. I feel that i have i bigger Risk , due to my age ( 55) and my bloodtests has until now not shown anything , except for A litte low D . Bibi
 
Dear Bibi,I never heard of jaw yerks in context of mnd..And obviously your pain symptoms even got better..It is good that you have something for sleeping. I take the same, double dose..I know how it feels, if you feel anxiety the whole day. Our chances to get s.th. nasty are the same. Statistic is not so important. It is always an individual fate. You have the same chance to have bfs like any other here (forget about me, I seems to have s.th. else obviously ;)...My next neuro appointment is also 25th of August. Hospital 9th of September...It is always a long run. But I know time goes by...it really does. I am into symptoms since almost 2 years (when it all started they also had some nasty potential diagnosis for me - which not became true), and into twitching 12 month (some other nasty potential things popped up). No quality time. Really not. Symptoms came and go. But after all I am hoping that after a while the nasty things are outdated. Time will fly, believe me...it is just a few days until your neur appt. I keep my fingers crossed for you, also!
 
Dear all,Now I marked my one year, though I am not very optimistic and don't feel very well. Muscle pain come and go with different locations, strange sensible feelings, some twitches, but not very often any longer - this got better. But o.k. I definitely don't have BFS. So this mark might not so much apply to me...I have antibodies against my nerve system and probably have polyneuropathy (Though I do not now how often those ganglioside antibodies are tested anyway. All other neuros before did not even think about this option). I saw my neuro surgeon today. He looked at my antibodies of my nerve system and is also quite sure, it is an autoimmune Polyneuropathie in combination with my hashimoto which I also do have...Those antibodies also appear with MND, but he is also sure - same as my neuro - this has a totally different development. So maybe you can take me as an example that even not having BFS and twitches and slight atrophy does not automatically means MND (that is what I hope!!). On the 18th of August I see the MND expert again (he asked me to come again, after I wrote him about the antibodies, but he stretches, he doesn't want to see me in the MND ambulance but in his regular office hour. He wrote certain essays about those antibodies and might be interested in the case - that is my idea).I have an appointment in neuro hospital for a check-in on the 9th of September but my neuro and neuro surgeon are of the opionion that this is not the right way. And it would better to have a muscle and nerve biopsy in the end, after trying some medication and see how it helps. All testings would just show up that something is wrong but not the reason. This university hospital here is regarded a bit critical in diagnostics, too (Mayo Clinic is a bit too far away :( ) So I am not yet sure, what I do...I know my neuro is a very good one. The only one with a clear idea up to now...My only positive outlook is, that the shrinked muscle under my foot seems to grow again a bit...That is what I think (up to know I just realized decline..). The same happened to my palm muscles one year ago. So there seems to be a process which is slightly reversible...And no weakness yet. Strong hands (I traine the quite often), though slight atrophy..Walking on heels and tiptoes no problem...Strenght testing perfectly. I can just summarize, that the last year I went through a special hell. Twichtes, atrophy...I was in a very dark place...And still I do not see the light..My mood is depressed. I almost get used to and must admit that I am just arranging with the situation that life just lost most of its qualitiy...But I don't give up at all...So if you feel like, keep your fingers crossed for me (and my kids and familiy) that everything turnes out in something treatable...German
 
I also wish you the best!!!! Please tell us how you are doing and how your appointment goes!PS: I thought antibodies are auto-immune related and did not indicate MND. Am I now hearing that if you have MND, that your blood test will show certain anti-bodies ?!
 
Hi!In 90% of the cases if there are certain antibodies against ganglioside, it is autoimmune. In 5 up to 15% they also appear with MND, but they are not regarded as a relevant criteria. But my situation gets worse..During the last days I lost a lot of muscle and power in both of my hands. My GP looked at them and told me he firstly thought of als...You can imagine how I feel today...Ok, this also can happen with the motor neuron forms of PNP. Especially because it is on both sides quite symmetrical. I stop for now training of my hands because I think it is not good at the moment. And maybe was too much anyway.But I am somehow shocked and try to prepare for the worst. But that does not get much easier after 2 years of suffering and anxiety....Any thoughts of someone that might help me in my darkest hours?German
 
Hi,I am sorry to read you are feeling bad at the moment. Since your neuro told you he believes it is NOT mnd, then you must trust him. You seem to fit the autoimmune polyneuropathy profile perfectly. This condition is not fun but afaik it's manageable. Take care !
 
Dear Christo,thank you for your supporting words. Yes, you are right. It is fitting perfectly...my motoric nervers are affected, my sensible nerves and my vegatative also (minder perfusion of blood, vasospasm due to vegetative nerves in the vessels, and one day also brain nerves - I could not speak for hours). My neuro told me this could have been a vasospasm in brain. But this happened just once, one year ago.. So this story is not nice anyway. All my symptoms came and go and were partly reversible. And in addition I am autoimmune anyway (hashimoto). These facts I tell myself everyday to calm me down a bit. Nevertheless it is scary ...
 
...almost everything is fitting to PNP. My reflexes are still normal...This is not fitting. Just vibration test showed slight restriction in legs. But actually I am developing a quite similar atrophy of hands like one year before. This is so crazy...
 
German - You said you were diagnosed with Guillain-Barré syndrome (GBS). Did your doctor talk to you about Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)? It is like the chronic version of GBS. Has he talked to you about treatments such as IVIG? Did you have a normal EMG? CIDP seems to be in one of the realms of "not that much is known."You might want to post about what is going on with you on this board. There are some knowledgeable people on there that have CIDP and GBS. Here are a couple other sites I have found. This might not be what you have, but you can read through them and discuss them with your doctors. It never hurts to have a little knowledge on your side and some questions going into these appointments. I really wish you the best and am routing for you :)MD
 
Dear Muppetdog,thank you for your response and the links. No I do not have a final diagnosis up to know. This is just an assumption of my neuro. And he first tried to help me with a low dose of cortisone. But it made it worse...He did not talk to me about the variations and did not make any electrophysic up to now.That is why I have an appointment in a neuro muscle center to get a second opinion. My neuro told me that his approach is to test whether steroid brings the antibodies down. If not he will try on a immunsupressiva....And in the end he will do the testing. I think he is afraid of frightening me with the outcomes and he first will present me some treatable dignosis...I don't know whether this is the right way. German
 
No problem :)I have done a lot of research on this because my neurologist thinks I have some sort of variant of it. I was diagnosed with Small Fiber Neuropathy (SFN) via epidermal nerve fiber density test (ENFD) a month or two ago and my Dr thinks this is all due to some sort of autoimmune related dysfunction. I never did test positive for any anti-ganglioside antibodies like you did, though. I guess CIDP is really hard to diagnose but can get worse if you don't treat it. Good luck. I really hope you get some clarity from your next neuro visits. Feel free to PM me if you want to compare notes, I have had just about all the tests that can be taken and usually make it a point to research why they are taken :)Mark
 
Hi there,this is again a very black day...Today I went to my Hand-Ergo-Therapist who treated my one year ago already for a longer time. She told me that - with my presence of Atrophy on hands and arms, it is obvious that I have a neuromuscle desease. She compared me with a potantial MND patient she also treates since two years (now it turned out to be s.th. else than MND for him) and said, my situation is much worse. Otherwise my situation would be not that different from a year ago and so she does not expect me to have MND. Then I would not sit there as I do any longer...does that sound promising? :oops: I tried to aks her why I then gained so much power in my hands due to training and she answered that I compensate with other muscles. And that for the training, it is not much muscle there (but the power is there....how can that be??)Now I am on Xanax. And I am quite released that my kids are not here today. She recommended me to try on a gluten-free diet to reduce potential inflammation (I am autoimmune and my hope is that my neuromuscle desease is a treatable one). I still do not have a concrete diagnosis. Actually the expect me to have some kind of imflammatory PNP. But Korticosteroide seems to mak everything worse... And for me it seems to be a long way.MND was ruled out more than once (but I had just one EMG a year ago, I am too afraid to do a new one. I am sure, it turnes out to be bad, if there is atrophy), but I have a new appointment with MND specialist next monday...I hope that I don't need a full package of Xanax after that. All I can do is just pray!German
 
Take a Xanax. Chill out. You don't have all the facts yet so don't expect the worst. I am not sure what a Ergo-Therapist is but it does not sound like she is a neuro-muscular neurologist so don't read too much into it. Go to your upcoming appointments and see what the actual neurologists have to say. YOU WILL GET THROUGH THIS :)Sending good thoughts your way.MD
 
No she is not, but she can feel my muscle structure with her hands and knows me from last year. But it is really true, I can watch my muscles shrinking in both hands and arms during the last few weeks. My opinion: Cortison was the wrong therapy for me and made it worse. That is what I hope. And this could be an important differential diagnostic.Of course, it is a horror trip. And I stay on Xanax until Monday.Things which are in my side:-I do not have any weakness yet.-My development is quite symmetrical yet. Left hand a bit worse, and right arm a bit more then left arm.-My left foot which had a very deep foot calf has got better. Muscle has come back partly. It almost look normal again- I had a weak left hand with shrinking palm area last year which recovered. Power came back.But this area is not involved that time.-This would be typical for Ganglioside Antibodies which are flouide and are wandering throughout the body.-My development started two years ago with involvement of my autonomous nerve system (vessels)and then went to sensitive problems -These two nerve systems are normaly not involved in MND-I had strange symptomes came and go like massive swallowing problems so strong that I could not drink for some time. That problem completely recoverd.-I had massive perceied weakness a year ago, which completely recovered.- Gangliosides are in 90% associated with PNP (though PNP mostly started in legs)- I am autoimmune anyway and that indicates it could also be an inflammatroy proceess-my twitching has got much better. Just some random twitching in places overall body. But not more then 4-5 times a day (that is what I feel). Even my hotspot (right foot) has almost recovered. And there is no muscle decline anywayI am fitting in no pattern. In any case I have a very atypical development.After my appointment with MND specialist I try to get a bed in hospital immediately unless he told me that I have the nasty one...Now I just can try to develope a different perspective on life. It might be limited but I should live...I am at the very beginning with babysteps. I experienced a similar perspective when I was a six year old child and had an open cranio cerebral injury. And I was the first case here in Germany, on which they try to do an operation. Thank good successfully.
 
Agree -she is ergo therapist, please only listen to those who have the real machines to test your nerve conduction and muscle waves, under the skin, what she cannot see. My osteopath and physiotherpists both had different ideas what was going on with me. I really HATE that she said that to you. THAT is not fair and I would be so PI**ED OFF! I am sorry that happened, but can totally understand how that made you feel. Some key points for hope from me, from what I learned, and what I think you also learned as well:-I do not have any weakness yet. - GOOD! You would totally have had weakness by now, based on how *** normally runs its course, remember it is progressive, no good days or bad, and strikes fast! *** patients are in wheelchairs within a couple months.-My development is quite symmetrical yet. Left hand a bit worse, and right arm a bit more then left arm.-My left foot which had a very deep foot calf has got better. Muscle has come back partly. It almost look normal again - - I had a weak left hand with shrinking palm area last year which recovered. Power came back.But this area is not involved that time.For the above two:Muscle and power does NOT come back in ***!!!!! And this is why it shocks me to hear that from your ergo therapist, if she knew you recovered :unsure: -This would be typical for Ganglioside Antibodies which are flouide and are wandering throughout the body. - There could be so many other things that we never even heard of that this could be!-My development started two years ago with involvement of my autonomous nerve system (vessels) and then went to sensitive problems Again, could be so many things, but this is not the typical development of ***-These two nerve systems are normaly not involved in MND-I had strange symptomes came and go like massive swallowing problems so strong that I could not drink for some time. That problem completely recoverd. Nothing recovers in ***!-I had massive perceied weakness a year ago, which completely recovered.Nothing recovers in ***!- Gangliosides are in 90% associated with PNP (though PNP mostly started in legs)- I am autoimmune anyway and that indicates it could also be an inflammatroy proceess - Yes, more likely something like that since *** really does NOT fit the above recovery you've made-my twitching has got much better. Just some random twitching in places overall body. But not more then 4-5 times a day (that is what I feel). Even my hotspot (right foot) has almost recovered. And there is no muscle decline anywayI am fitting in no pattern. In any case I have a very atypical development.After my appointment with MND specialist I try to get a bed in hospital immediately unless he told me that I have the nasty one...Now I just can try to develope a different perspective on life. It might be limited but I should live...I am at the very beginning with babysteps. I experienced a similar perspective when I was a six year old child and had an open cranio cerebral injury. And I was the first case here in Germany, on which they try to do an operation. Thank good successfully.Yes, please wait to see what the specialist says. You can'T do anything until then, but live. Do your best to enjoy everything around you which will hopefully make you feel a little more relaxed. Please let us know what happens. Thinking of you! <3<3
 

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