I can only say i've been through everything you have and you will find,like me more then once hear we go again. Please when you have time check Glen's
imformation..Do you have trouble walking,from being able to do fine on your own,to cane,walker,scooter,power chair,or wheelchair. Hope not but beats falling so on..I'm glad your here,not for PN but your testing is bound to help someone and perhaps someone just may help you, how about your hands up,
dry mouth,dry eyes,very dry skin? Bless you and hugs to all.I have found
Cinnamon Pills help with pre and Diabete 2 please ask Dr. it's old fashioned but making it's way back..Sue

WHAT? Ok, news to me. (An you were def. lucky to miss that part.... LP's suck.... especially when they don't give you any answers. ;) )

I hope I do find some answers, and soon. I just have to wait till the 15th...then I get to see the Rheumatologist, and hopefully she can tell me if I have sarcoid or not. (If not, it's back to square one...or at least, almost.) I'm getting exhausted.

Thank you for your suggestions. (I will ask Endocrine Dr. about the Cinnamon Pills...Luckily he is an old fashioned Dr. so I think he will be receptive.)

I can walk on my own, I just don't like to walk, as it makes the pain worse. (So does lying down for that matter.)

I do have dry mouth, and I didn't notice it for a while, but recently I have been noticing I think I might have dry eyes as well. My skin however, seems to be normal. (I hope)

And I would be glad if some of my info was to help someone else. Or if theirs was to help me. That is why I am on these boards.

One question though... What/who is "Glen's imformation"?

Thank you for your help.

This might be a silly bunch of questions, but I was wondering what your symptoms were? I am wondering why/if diabetic peripheral neuropathy is known to be made worse by lying down, or being worse at night? Also if you experienced the sensation that it got worse with movement/being walked on? Also that if you are asleep that when you wake up is is worse for a while then calms down? I have tried looking this up, but no-where do they talk about this kind of thing. Thanks for your help!

Update
 

The Rheumatologists think I have Sarcoid, or another Inflammatory Auto-Immune disease, (based on the fact I had Erythema Nodosum, and Optic Neuritis, Swelling, And Blood tests that point them in that direction, like the Ced rate being elevated for 2 years now.) They still don't seem positive it is it, but based on history they seem to think it is probable. (And I am like, you couldn't have seen this last year when I saw you?) And they also think I have Fibromyalgia.

They are going to start treatment (can't do steroids, or don't want to because I had such massive doses because of the Optic Neuritis so they are going to try Methotrexate which they say won't help with the pain as damage has already been done. It makes me feel a little hopeless though. As they have tried almost everything on me for treatment for pain and nothing seems to work well...The steroids were wonderful though.) but are waiting to check in with my Neuro.

Idk. This is confusing. If anyone has any other ideas or suggestions I am still open!

Possible place for help
 

Try posting in the Sjogren's Syndrome Forum. Here is the web site: www.sjogrensworld.org

Good people there. Maybe someone can help you.

Billye

Thanks, but i don't think this totally fits. :)

Update
 

I have started the treatment, Methotrexate (sp?). I just hope it does something, as this problem has gone on long enough, and has me and other people confused.

But if anyone else has any ideas please share! :hug:

please clarify for me..
 

I am still on vacation and have time constraints with this
laptop and wifi....

I am looking at this thread a bit each time I log on, and have some questions...if you can answer them for me, by next week when I return I may be able to offer some opinion...

Right now I wonder what your B12 level really is.

Also did you or do you use:
Nitrous oxide

Go to raves

smoke MJ

were given antibiotics Cipro/Levaquin, or Flagyl (metronidizole) in the recent past.

exposed to formaldehyde in new building/carpeting or
been varnishing or stripping furniture.

drink well water or exposed to arsenic treated wood

have you had a serum bicarbonate run regularly while using that Topamax? Topamax can cause acidosis which gives symptoms of PN.

I will be back in the latter half of next week, and can then devote more time to your thread. See ya then.

Ok, Let me see. I will answer to the best of my abilities.

Truthfully I am not sure of the exact level as I do not have my blood work. But both my Endocrinologist and my Neurologist say that the level is normal.

No.

No. I'm not a big "party" person.

No. Again, not a big "party" person. I have never done any drugs, and I have never drank alcohol.

No. I was on Vancocin HCL and Xifaxan until about 6 months ago. (I was on them... or at least one of them, for a year or so.) I was taken them for my IBS, and was told they would not get into my blood stream as I was taking them oraly. I guess these ones have to be given intravenously to be in your bloodstream.

No.

No. Not that I am aware of. But it's not exactly like I could ask every person in every place I go into "Excuse me, but is your wood treated with arsenic?" they would think I was nuts. :rolleyes: I assume I haven't been though, as that was an old thing to do and probably the furniture in the places I go are safe.

Well, to be honest the Dr. who is prescribing the Topamax for my migraines is not on top of things. He hasn't seen me in over a year now. But my Endocrinologist does blood work every couple months and I am pretty sure he has tested this as he has mentioned it and the fact that it is fine.