Playing Basketball Again: Results?

Duke 11What's next ? I would give plasma exchange a go - it's not that uncomfortable - it's well worth a try. Your 80% sounds good - can you tell me your current medication regimeI am still looking for that silver bullet that will give me some more reliefI wish I could work out 5 times a week - I know my calves & Thighs would seize right upSomeone quoted Ghandi in their sign off - I have just visited his museum & home in Mumbai 2 weeks agoI am a fan of his however, unfortunatley he can't help me in my worldly suffering of Isaac Syndrome/NeuromytoniaKind regards to allRicktSydney Australia

rickt, I'm glad you're back. I apologize for being away but I thought the string was dead so I didn't check it for a while.BillBob suggests that I try nothing at all. I'm going to come full circle back to that after I've seen what the medication and other treatments can do. Then I'll have a pretty good idea of what my options are.Plasma exchange... That sounds scarey. Please tell me a little more about it and how it helped. Do the improvements last? Why 7? Are you going to have more?You asked about my regime. First let me say that 80% improvement was a bit high. After further analysis, it's actually about 70%. I'm currently on two anti-epileptics (gabapentin and lamictal), a muscle relaxant (baclofen) and an anti-anxiety drug (amytriptyline). I'd recently added the lamictal, and I was very hopeful of improvement, but after a few months I didn't see any improvement (that I could tell) so I've stepped that back down to zero and I'm trying to determine if there was any change at all.I'm probably going to add tegretol/carbamazepine to the gabapentin to see if there's any improvement. Tegretol was the first thing that I tried after my diagnosis, and I did have some improvement (about 30% I guess) but not as much as with Gabapentin (about 50% to 60%). Maybe the two together will do something. Anyway, tell me more about the plasma exchange.~Duke 11

Duke 11,If you're not ready to try nothing, you should look at trileptal (oxcarbamazepine). I took both neurontin (gabapentin) and trileptal, though not at the same time, and neither did much for my fascics. Both actually did help my muscle pains and other issues. This condition and the treatments we all try is so different for all of us, the one for sure thing is that no one thing fits everyone. So go through the process that is right for you, and seek out all the treatments that you desire, but please in the end, remember, this is truly a benign condition....a serious pain in the @ss, and life altering, but still benign.Take care and good luck!Gary

Thanks BillBob,I've added trileptal (oxcarbamazepine) to the list of things to try. I was going to add carbamazepine, but oxcarbamazepine seems to have a few more positive affects and a few less negative effects than its brother.~Duke11

Duke 11Yes, I am back. Since I have returned I have been going down hill for the past few weeks.Fasciculations everywhere cause lots of stiffness all over. Like a dog with a hundred fleas and don't know where to scratch maybe my medication is wearing off. Just don't know.Anyway, the Plasma Exchange I had about 18 months ago when I was in hospital, I am pretty sure it contributed to getting me out along with the medication.It's not that scary - takes about 2 hours - intravenous tube in left arm takes out your plasma through a centrifuge into one bag and fresh plasma replaces it into the right arm - about 5 X 500ml bottles. It's usually done on 5 consecutive days.Theory is - it gets rid off the antibodies causing the problem in this case Isaac syndrome, an auto Immune ConditionIt's fine for Doctors to Diagnose a lot of people on this site with BFS but its my humble opinion many here have Isaac Syndrome/Neuromytonia undiagnosed The Fasciculations discussed here must be caused by something. Yes, Isaacs is mighty hard to diagnose.Hope this helps youRickSydney Australia

Rickt,Thanks for the additional description of plasma exchange. I recently had another positive test for immune complexes. The neuros indicate that this is probably related to my symptoms. I found an article that studied 37 people with neuropathies of different types, 34 of which had elevated immune complexes. An extremely high percentage showed good to excellent improvement with plasma exchange as this lowered their immune complexes. All but one that did not benefit had neuropathy but did not have elevated immune complexes. This evidence may guide me toward trying plasma exchange if my symptoms show objective evidence of progression such that an insurance company would be willing to pay for this expensive procedure. Keep in touch and let us know if you are able to get your symptoms back under control. Do you think you will try the plasma exchange again? Also, is it at all painful?Krackersones

KrackersonesNo the Plasma Exchange is not painful no more than the needles going in. Yes I am considering trying it again. I am lucky with the cost because it is covered by our Medicare System and was free.An Autoimmune Condition was indicated in my Lumbar Puncture.Rick Sydney Australia.

Amen! To know others are still going strong after 20 years of this nonsense is reassuring.