Neuropathy Pain

[gjensen]

Guess I have officially joined the ranks.

I have had little flares of this and that concerning pain, but it seams to be here to stay now. This flare I am in has been especially rough, probably compounded by no real sleep in a week.

Now it feels as if my stomach, groin, and both full legs are on fire. Well, maybe not that bad, but bad. Occasionally it is in my left arm. I have been having awful chest pains lately, and I am starting to wonder how much of it is nerve pain.

The muscle twitching is back. Not here and there, but everywhere all of the time. The teeth chattering is back. The neurologist wants me to get another emg and eeg. Did I say that right?

Ironicly my heart rate has not been bad, but my blood pressure has been low.

I am on a bit of a roll right now.

I have Gabapentin to take that was prescribed for the head symptoms, that the Duke neurologists still thinks it is CSF leaks. I has been suggested that I take it for this pain. I am not going to take it yet though. If I can handle it.

The reason is this unremitting sleep apnea. the more tired I am, the worse it is. Then the longer I go without waking up, the worse off I am when I do wake up. Honestly, I am concerned with how far it will go if I do not wake up early enough. Then, I cannot describe how difficult it is to get my breathing normalized afterwards.

Looking at heart monitor results fom six months ago, I see a number of misc. arythmias. None of them are serious, but I was interested to see the frequency. In two weeks I had six pauses of an average of 2.5 seconds. Numerous pacs, and pvcs. I could go on. None of them on their own abnormal in the sense that many people have them. It was just the qty that interested me. I was also interested to note that almost all of the pauses were at night when I would have been asleep. I wonder how common six pauses is in two weeks.

Then I looked at the echocardiogram from the same time frame. I have thought that I have occasionally caught the sound of regurgitation. On the test results I have regurgitation on all of the valves, labeled mild by each. No one told me. Maybe no big deal, but would have been nice to know. I wonder if this is some of my heart pain. I had no heart pain then.

Sorry for the ramble. I am very dizzy today. Just not with it. Probably the no sleep. I got two hours this morning.

I fully fainted yesterday for the first time. I was headed to the bed, so felll towards the right thing. No one was home, so I did not scare anyone. I am not a fainter. I have played with the idea along the way.

There is my update.

[looneymom]

So sorry that you are having to deal with all of this. The only thing that I can suggest is to keep working on this from a nutritional stand point. That's how I am using the 23 and Me test results that I got back on Tyler. From what I have learned it does make a difference on what type of B12 your body needs. If you are giving your body the wrong type of B-12, your body my not function up to par. I am still using the B-12 complex for the GNC but it does not contain the methly B-12. However, Tyler's body can still use this B if his body can get it broken down into this form. It is the safe way to take vitamin B-12 bcause you cannot over load the system to quickly. However, methlyB-12 can be used very quickly by the body but if the body is not able to break the regular B-12 down sometimes you have to go another way to help your body. Studies have been done that show methyly-b12 really helps with patients energy levels that have ms and cfs. The active fomr of B-6, P5P is more asorbable and is needed by people that need methyl B- 12 doners. It helps with nerve signals and helps with regulation of neurotransmitters in the brain. Don't give up Gjensen! It takes time to figure this out. Be patient with your doctors and work on the nutritional end. Keep a journal daily of foods, symptoms, and any new medications, or supplements that you add. If your doctors care, they will be grateful for the information that you can figure out. Good nutrition may not be able to cure all your symptoms, but any advandages it gives, is worth the effort.

[corina]

I'm so sorry for everything you have going on gjensen. Your fainting may not have scared your family (which I agree is a good thing!) but I do think it must have scared you a lot esp as you're not a fainter. Fainting feels so scary (I used to have episodes where I fainted, not anymore fortunately) I wish nobody had to experience it. My memory is pretty bad so I'm not aware whether you have good doctors to work with.Are you on any meds to help you deal with your problems? I really hope things will get better for you soon!

[gjensen]

Thank you guys.

Corina, I have come close, so I knew it was coming eventually. I felt it coming. The oddest part was coming back to. I have never felt like that.

I am in a bit of a quandary concerning meds. I have high HRs and high BP, and then I have low HRs and Low BP. They are trying now, but they are throwing them at me like candy. Tomorrow and the next day, I will build a consensus of sorts.

I do have a good team put together, but it is a new team. It is going to take them a bit to get a feel for how I present. I am throwing a lot on them at once. That is why I have not jumped on the medicine bandwagon yet. There is always that, but . . .

I am consulting with a neurologist, and she will be a lot of help. I have consulted with her twice, but it is a lot to swallow in two consults. I think after the next one, and I finish getting her some records . . . . .

She has ordered a lot of testing and re testing. I am going to Mayo May 5th. I will see what they do and do not do first. That is what I am trying to do more than anything. Hold on until then. It isn't far anymore.

I suspect this sleep problem is contributing to this flare. It has to be. I will begin working on that Tuesday.

[corina]

Happy to hear you have a good team of doctors! Also being able to go to Mayo will hopefully get you the answers you need. May 5th is around the corner, I hope you can hold on. Your sleep problem seems major I hope (and think) Mayo will be able to address that. Sending good thoughts your way

[gjensen]

Thank you Corina. I am still in reasonable spirits, so that helps.

It has gotten to me a bit here and there. No sleep makes everything worse. Certainly not thinking clearly.

Hopefully this pulmonologist can get me in for a quick study. I am still concerned that I will come out of this flare, just in time for a study. I would prefer not to go through this again.

I had this before. Then it left me alone with just the occasional spell. This time is worse.

The team of docs is as good as I think that I will get. Had to move on from the ones prior. A Duke neurologist, which I like a lot, finally decided that he would prefer that I see a autonomic specialist. It called it other than typical. I have a consult for that now. I like her. There is just to much to swallow immediately. I change so much. The cardiologist has seen this before, so he can help, but I would have to be lead. The GP is willing to do what I ask. Combine that with a Mayo trip, I hope someone can help me get stable.

That is all I want right now. Stability, or some sense of it.