Quote:
Originally Posted by en bloc
I certainly understand your frustration...it was 12 YEARS before I had a proper diagnosis for my collection of terrifying symptoms. All my doctors recognized the seriousness of my conditions (that tests showed positive), but they had no idea what was causing everything, so no clue as how to treat me.
I felt the same way you do...wanting to keep trying anything/everything until an answer could be found. So that being said, if it were me, I would pursue the biopsy. You & I have discussed this before...and how the biopsy CAN show damage that and MRI would not.
I would also try the Cellcept. I had short term success with that helping nerve pain/symptoms, but I did have to stop due to an infection. It was NOT from the medication. I had a large hematoma form from my blood thinner injections. It got so big (grapefruit size) that the mass became infected (which would have likely happened even for someone not on an immune suppressor). So I had to stop the Cellcept...but I did have 3 months of reduced symptoms before the hematoma got infected. It is certainly worth a try for you. Yes, you can get sick from it ,but you're sick because you're NOT being treated, so maybe you should roll the dice and try. If things start to get worse ,then you can stop and there are remedies for it (like IVIG to quickly boost the immune system---if you get seriously sick from a weakened immune system).
The IVIG trial you had wasn't long enough to show whether it would work. There is NO documentation that says only 2 infusions is the normal course of treatment. The typical course is at least 6 months. It takes time to reorganize the immune system...not something that can happen in 2 months. So another opinion on IVIG would be worth while at this point...someone experienced in prescribing IVIG for immune based neuropathy. Do you know how much they were giving you?? Neuropathy dosing is 2 grams/kilogram of weight. Is this what you were getting? if not, then this is also a factor in your brief trial of IVIG.
Have you had any success with symptomatic relief...like Neurontin, Lyrica, or antidepressants used for nerve pain? What about pain meds? I can't remember all your history, so not sure what you've tried and haven't tried.
Try to stay positive. I know it's hard, but attitude is very important in this fight. Frankly, it's the only reason I'm still here today, I believe.
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Hi En Bloc, thank you, I very much value your replies to my posts. Yes I feel you are right and I am going to have to pursue the biopsy as a next step. If it somehow shows nothing I will just cross that bridge then.
I couldn't tell you the quantity of ivig per infusion. The problem unfortunately was that I did have a pain flare in new places afterwards so we agreed to hold off. Accessing more ivig will be very difficult as insurance won't cover more and the NHS won't use it for Sfn only. I don't know how it may differ if a biopsy shows denervation of the muscles.
I'm going to phone the secretary tomorrow to get the ball in motion for the muscle biopsy. I really don't want to have this procedure but know I kind of have to.
As much as I wouldn't wish this on you, knowing that you understand how hard this road is does make me feel much less alone.
I stay upbeat around those around me, but I especially my son. As time goes on my hope has been diminished and that has had the greatest impact on my mental well being.
Meds wise I was on 3600 gaba and the odd ttamadol. The gaba had caused such severe sedation that I successfully managed to reduce it to 1800 a day. I have days where it doesn't make any difference and others where I feel that this has worsened the pain I feel. I cannot cope with the sedation as my son is 4 and I have little help.
I've emailed neuro Secretary to ask about next step from this. Tried a few antidepressants which I could not tolerate at all.