18 Months of Twitching: Success

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L

ListoR

Active member
Hi Everyone, After 18 months of twitching I have finally been told that it can not be a degenerative disease. I was told by my neurologist a year ago to wait - if I hadn't developed further symptoms within a year then I'd be in the clear. I saw the same neurologist last week and he didn't even bother examining me. He said that it wasn't possible for the twitches to be caused by a motor neurone disease as I'd be experiencing very obvious symptoms by now. However - he STILL didn't discharge me and he still didn't give the disorder a name. He took another load of blood and is still looking for the antibodies he looked for 18 months ago. He seems to think that there's something in there making me twitch and that he can make it better. He mentioned something called a plasma exchange. I'm not bothered any more - I don't think about the twitches and I was hoping he'd forget about them like I have. I've a feeling I'm a bit of a research case. If the antibodies weren't in there when the twitches first started then I don't see why they should be there now. If you are reading this post and you've just started twitching - hang on in. Eventually they just blend into your life and you forget them - until an eager neurologist wants to dredge it all up again! They do not worry me AT ALL and I used to lie awake all night shaking with fear. The more time passed the more I began to realise that they were harmless. The neurologist just confirmed what I'd already worked out for myself. Don't worry,Jan
 
I have been twitching 16 months and my neurologist is also convinced mine is antibody related and also brought up plasma exchange. It is more of a possibility should I progress in any way and so far I have not. However, regarding antibody tests, I should mention that I started twitching in late June/early July 08. I had two ANA tests (they just reveal general levels of autoimmune antibodies but not specific ones) in late September and early October 08. Both were extremely high (1:2000+ and 1:1000+). By late October 08, my ANAs were negative and so have been a few other subsequent ANA tests more recently. I also asked about how the ANA tests could be significant when I still twitch but now have had negative ANAs. I had tons (and I mean tables full of blood viles and inch thick reports) of specific antibody tests and all were negative. The rheumie and all neurologists I saw were not surprised that sometimes the antibodies showed up and sometimes that did not. Apparently this is common. You just have to test at just the right time. But the high ANAs just confirm their suspicions but even without them they might still think my problems are antibody related. They also indicated that not all specific antibodies that could effect the nerves have been identified so there may not be a test for the specific one you have. I asked for the VGKC test but my neuro said it was extremely expensive and my insurance company would probably deny coverage. He did not think it was important to know the specific antibody type since the treatment is the same regardless of type and the main issue is whether your nervous system symptoms are significant enough to warrant the treatment. I guess this makes sense.
 
After a big flare of my symptoms the last few days, I went yesterday to see my neuro. Hi is a very experienced doctor. I hve been twitching everywhere for 18 months. I have not EMG done. I asked for an EMG and he said this is not necessary. I told him about neuromyotonia... Isaac's Syndrome and....suddenly cut me speech and told me:" forget every diagnosis. You only has twitches, no spasms, no weakness". He told me not to be worried...and avoid test. He said the most important is the clinical examination.INvestigations are only expensive test and will not help me with my symptoms.I agreed with him. He has treated in our local hospital few doctors and nurses with BFS/ PNH for years and never has seen serious diseases undergoing. He recommends me to start with rivotril (clonazepan) but I am on gabapentin and it's working fine (reducing about 70% of my twiches). So I will continue with gabapentin. When I came off from his office I thought : my neuro is not taking me seriously, but I know him for years (I am doctor and i know every doctor in my community). I know he is a very experienced and honest . I think i will continue with my twitches. I continue my normal life: working, family and ........next month Holidays!!!!. I know I will have another flare of symptoms and i my anxiety will grow up..and i will pop up in the neuro office again...and again. lol.
 
I also brought up Issacs to both neurologists I saw and they said I didn't have that. Although I often wonder about this. It's the one thing that still bothers me. However, I do not have the other symptoms that go along with Issacs. No cramps, pain, or stiffness so I am hoping they are correct.
 
This is just my opinion so don't take it as more than that. I think the docs don't want to put labels on things if they don't have to because for most of the conditions there is no sure diagnostic test. You could have a mild or atypical version of anything. A lot of the conditions discussed around here are written about as being "heterogeneous" or has having "different presentations," so they are difficult to diagnosis. The only reason you even need a diagnosis is for insurance reasons or to have a rationale for a specific treatment. If the doctor does not think you need treatment or the insurance company does not need a diagnosis code for whatever reason, then the doctor will resist labeling you unless you fit the classic case. Why risk being wrong or worry the patient unnecessarily. But this does not mean that they know what is going on or what is not going on, it is just how they choose to handle it for their own reasons and what they feel maybe is in your best interest.Krackersones
 

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