Introduction And Questions

[marti1212]

Hi All. I have been lurking for a long time and finally took the step to become involved with all of you. I so look forward to knowing all of you. My name is Marti. I have a wonderful dh and 4 beautiful blessings. I have been diagnosed with POTS since February of 2007. I still continue to deal with all kinds of issues. We are currently also looking into mitochondiral disease.

My first question is do any of you also suffer from small fiber neuropathy? I have this and it is horrible. The neuromuscular doctor says I am to young to have it but I do of course with no explanatins. I am allergic to most pain medications so there is nothing that can help me at this point.

I also suffer from severe dyhdration. The mito doctor wants me to drink more but that is just not possible. I go back to see Bev at Doctor Grubb's office the 25th of this month so I might ask her about home iv's. My albumin levels keep coming back excesivly high with my urine tests.

What about recurrent infections that you can't get over? I have had a UTI for over a month now that antibotics just cannot get rid of?

Looking forward to getting to know all of you

Mrti

[MightyMouse]

many of our members have neuropathy as you describe... being allergic to many meds myself, I feel for you! I haven't much to add regarding your other questions though. We have a members with recurrent infections of various kinds, not just uti, who may chime in here if/when they feel up to it.

Nina

[Megan]

Hi Marti! I hope you find some comfort in numbers here! As far as dehydration, I have standing orders from my dr to get an iv (no more than once a week, one liter of saline) after I have an "episode" of pots. I don't know if that is feasible for you, but maybe it could be an option. Also, have you seen a urologist or something? Maybe it's not a UTI and that's why it won't go away?

Meg

[Eillyre]

Welcome Marti!

I haven't dealt with most of the issues you mentioned (I must be from the wrong side of the POTS family tree!), but this is certainly the place to find other people who do. Glad you found us!

Angela

[ajw4790]

Welcome!

I too have small fiber neuropathy and yes it is not fun. If you are experiencing neuropathic pain have you tried something like Neurontin or Lyrica? There are also other drugs that they use that aren't necessarily "pain killers".

It sounds like your neurologist may not be very well versed in this kind of an issue (of course I know very little of your situation), where about do you live and if you feel they are not familiar with your condition is there someone else you can go to? As far as an explanation to the small fiber neuropathy, I think that very few if any of us really know what caused it for us and why. As far as age, I think it is seen more in an older population due to diabetes and Pernicious Anemia, but it is still see in younger individuals.

For the severe dehydration and not being able to drink more. I was curious if you know why you have severe dehydration and why you feel you can't drink more? I am always thirsty and drink a ton. Is the albumin high due to not drinking enough? I am not familiar entirely on what that result would mean?

Also, yeah for the UTI have you made sure that it really is a UTI by seeing a urologist etc. Or tried some of the homeopathic things like(I can't remember) but Cranberry juice etc. Is it as a result of not drinking enough? So, if you continue to be dehydrated it keeps returning/not going away?

Do you have swallowing issues?

I hope you can find some assistance. One of the most important steps is having good doctors that listen and are willing to help you figure out the puzzle. Another step is going through and trying everything in the "book", at a seemingly snail speed (to make sure to try everything appropriately).

What is dh?

Good Luck!