Peripheral Neuropathy

Here is the link to the forum:
http://neurotalk.psychcentral.com/forum20.html

I had ALOT of blood drawn yesterday, and the results all came back NEGATIVE! wooo hoooo!

I dont have sjogren, or lupus, or arthritis markers. I am not showing severe allergy markers, or well...lots of other stuff. SSA, SSB ANA IGE,SED, and so on . ALL normal!

You just gotta love good news. It doesnt make my poor eyes feel any better, but it does make my heart sing.

Thanks for all the well wishes.

That's great, Deji! So happy for your good news!

Thanks for sharing. Hope you get some help for those dry eyes.

Gosh I am sorry, I thought I responded to this post.

I have had severe dry eyes, getting worse over the years, the dry mouth that I blamed on meds. But when the MS doc's PA thought my new symptom of pain was fibro, I found a rheumatologist. She ran all kinds of tests but when she asked about dry mouth etc she said she thought it too might be Sjogren's. Even joined their forum.

Tests were NEG but since no one thinks I have MS either, she decided to treat me for Sjogren's as a "differential" DX even tho tests were not suppporting it. She told me I just had too much going on.

I was put on Plaquenil and Methotrexate which I hated. BUT found out Methotrexate stopped my SPASTICITY in my legs. What a treat. STiLL I didnt like the side effects so I was taken off of it. Then saw another Rheumy as she left her practice and he said I do not have Sjogren's without pos labs.

BUt.. he thought all my symptoms could be an autonomimc problem. Fact is the 2 neuro's I see didnt even read his letter. So I told the MS neuro who said I should see a cardiologist instead. AND again now thinks I do not have MS and now no Rheumy either.

So.. still a mystery. Hope you get relief. I found RESTASIS that the Rheumy put me on CREATED tears and now I hardly need it.

Try it, but it takes a prescripton.

Warmly, Jan

My mother has scleroderma and had her tear ducts sealed to help with the dry eye and it worked wonders. Her eyes were so dry she would constantly get infections.
My sister has sojourns and says you have to have a humidifier running especially at night. So that would be worth a try, but I think the plugs will help you a lot. She has not had too much trouble with dry mouth either.....but my mother has lost most of her teeth to exteme dry mouth. She takes a pill called Evoxac or( somthing like that) that has really helped her with that so there is some help out there if you need it.
She uses REFRESH PLUS eye drops for moderate to severe dry eye in the individulal vials to make sure they are sterile as dry eye can have problems with drops that become contaminated.
She also takes glucosamine for joint damage.
I'm so sorry you got hit with a double wammy. But autoimmune diseases often have piggy back diseases.
I just talked to a guy the other day who has MS and Lupus. Its awful that you have to deal with something else.
Big hugs to you

My sister was also told Sjogren's and she treated her symptoms like that for years! The eye plugs were a gift from above, and solved the dry eye problem.

She has lately been dx'd with lymphatic colitis. She has allergy troubles, digestive troubles, terrible skin rashes. It is another tough disease!

I will see a rhuemy soon, and he will completely rule it out. I DONT have dry mouth, but I do have very dry poop. I drink tons of water through the day. I have a humidifier running 24/7 and I feel like a dust ball. My skin is better with the humidifier, but it is still prone to dry ezema. I used to have severely dry mouth in the past, but learned some hygiene tips that really worked, and I dunno, it just all sorta turned around.

I ordered the EyeEco kit for severely dry eyes. Its a double eye cup style blind fold. it has soft pads in it that can be wet. There is a heating pad that can be placed behind the pads to make a spa bath for your eyes. I only got it yesterday, but it was quite wonderful to take a break. The eye cups block out ALL light, so its very dark, and forces your eye to rest. That will be a great tool for the MRI machine. I MUST cover my eyes in there.

I have not been given restasis, but I do take natural tear products. I only use the single serve stuff, to beat the preservatives. Systane is a product that lasts longer than normal natural tear products. My drainage ducts are wide open, so no matter what goes in, it slides right into my sinus. so, I will be happy to keep any moisture. July one is my day for plugs. I hear that you cant see/feel/or be bothered by them. I am looking forward to not waking up with my eyes so dry I almost have to peel my lids off um.

This has been quite the learning journey. My MD threw in all kinds of other tests like Lupus, and Sed rates, and Arthritis markers with SSA and SSB testings. All came back within normal limits. I hear many who have big sx and normal blood tests, get a positive lip biopsy. I am happy to not have any new diseases. I have my hands full with the old one.

I will let you know when I get the plugs. Did I feel um? did it hurt? do they help? and so on.

Thanks for the cheerleading. you guys are awesome.

Good luck with all your appts and treatments. I did not know about the eye cup thingy... how do you get it?

ANd make sure your MD faxes over all results to the Rhuemy as that will expediate the process.

Keep me posted ok?

Jan

This stuff is the BOMB! I am thrilled with it. It is eye cups that you wear like a blind fold. IN each cup, you can place a hot pack or a cold pack and a wet sponge insert for an eye spa. it really relaxes your eye. hydrates and soothes. At night, you can take the sponge out and wear as a black out mask. it cuts ALL light. I gotta use this in the MRI. I sleep with my eyes slightly open, so they dry out even more. This forces my eye to relax and stay closed.

http://www.eyeeco.com/

I dont own stock in the company or know anyone that works for it. I happened across the link at the sjogrens forum. I ordered extra hot/cold packs today. I am in love!

Dejibo:

So glad to hear it works for you. You have a lot going on and you needed to get a break.