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German2 wrote:Hi there
I 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...
German2 wrote: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 But after all I am hoping that after a while the nasty things are outdated.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!
German2 wrote: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
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