My neuro appointment on the mysterious Paresthesia issue

I had my appointment with the neurologist about the intense Paresthesia sensations have been getting below the waist. The good thing is that there is no problems with my spine from the lumbar area down. He said the last MRI that was done was done on the entire area. Even though one would think the symptoms would indicate something in this area, it definitely is not that. Which is good, none of that sounded in the least bit freaking fun at all. He also said my file reflected my doctor had checked my B12 which was good. I had wondered about that, since it can also cause Paresthesia... sort of thought that might have been a nice easy one. Still reflects my doctor is on the ball there.

He wants to do a MRI from the lumbar area upward to the neck to check for anything that may be affecting the spine in those areas. I had assumed none of those areas could cause such symptoms but I guess not. Still he said I had to be prepared for that to not show anything. Unfortunately I am prepared for that. Having fibromyalgia essentially does prepare one for having things Not show up on tests. But in this case you really do want it to because then they can do something about it. And I admit this symptom is freaking me out in its intensity and the loss of sensation in areas.

Yet Paresthesia, even if it is just this specific area, still is a symptom, while you know is something CNS doesn't really narrow it down that much. Even with the loss of sensation issue, that just suggests I guess that whatever has been going on is blocking something from getting through to the area where the Paresthesia has started at... but then got worse and began to spread to a larger area. I know what makes it worse, but nothing seems to make it better. He asked me what makes it better... and seriously nothing does... it isn't like position is at all a factor. I do know what makes it worse... walking a lot, standing still a lot can do it, exercise most definitely, and going to sleep... as in lying down in one position, especially on my stomach. I know it began with the exercise increase I did that coincidentally came with lower back pain (one sort of makes the leap that the two were connected), but the lower back pain which was very odd and very painful did diminish after I stopped exercising for more than a few months to recover, whereas these symptoms have not... and the exercises I was doing were all muscle groups, as that was the point... but very mild in nature, as that seemed to be all my FM was allowing pain wise.

What puzzles him and I suppose really doesn't make sense when you think about it... is that it is intermittent symptoms. Yes, they are damned intense tingling sensations, and yes at night it can spread down to my feet, can cause numbness in the main area and even weird sensations, even sharp sensations and pain in my feet. But I would say at night and after exercise would be the longest durations of bouts, lasting about two hours? And the rest is sort of intermittent through the day. I sit down I feel it, then it goes away. Get up and walk about, feel it again, maybe it gets more intense, then goes away in about a half hour or hour. Sort of stop and go, but not constant. No constant tingling or numbness like the nerve damage in my hand, which you sort of expect if there is an area of your spine that is literally wonky in whatever way backs can be so. He is not sure what could be the cause of the symptoms right now. I don't blame him considering the area of the back one would think would be generating them is fine and the symptoms themself while strong are not always 'on'.

I should have asked if this could be some really strong reaction to Topamax. I didn't think of it. Should have though. Might be worth going off it just to see. I know back in the day when I was on it the first time it caused Paresthesia as a side effect in my hands, feet and face... but not that strong and not in the body area.

I just don't like it. I don't like having peripheral neuropathy that doesn't make sense and I don't like this 'haywire' sensation and lack of sensation business that likewise does not make sense. That is a lot of CNS business that does not make sense. So when i say I rather hope I have something wonky and treatable with my spine I only mean that in the sense that it is preferable than something unknown and wonky lurking there under the water. I will deal with it as with all things if I am told it is under 'random miscellaneous nerve issues' but I would rather not, say ten years down the road get permanent nerve damage in my feet and have them go 'oh right Now we know what it is'. That would just suck. Also I know from experience that intense tingling Paresthesia may be very annoying and preventing me from getting comfortable at night... but prickling, electrical, stabbing or burning Paresthesia which are still the same thing in that region would be Far worse. And that is aside from the lack of sensation issue, which is a rather big issue... since That is not intermittent, which isn't Paresthesia as far as I know but may be caused by it, isn't numbness but is just a lot less sensation.

He did suggest I think about the type of exercises I do. Which actually my mom suggested as well. It does seem to be just activity in itself. But I do know a very low impact video I got to replace the exercise I was doing did seem to not be as bad... well not on my back anyway. I suppose I will have to test whether it affects anything else. But really sort of have to move the back and if it is in fact somewhere else in my back sort hard to figure that one out.
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