Please for the love of god make the pain stop

[Samantha Burns]

The short of about my self. I'm in a transitional period of life, going from being married to starting to live of of SSI. I'm 31 going on 32, dx'd in 99 & have had 4 MS attacks & numerous excerbations. Lucky me my MS attack 2 & half years ago gave me neuropathy from head to toe. My pain was manageable however I did end up throwing away over half my wardrobe because even heavily medicated I could not wear them anymore. So at the moment I'm only on Gabapentin & I'm going crazy trying to be reffered to a Neuro & a pain specialist. I think I'll go to the ER this week & see if they can help relieve the pain even for a few hours. To say I'm annoyed because my last 6 months of hell were completely preventable is an understatement. What can I do to make things move faster? I can't do another month of this.

[CasinoKathy]

Hi Samantha, here's a BIG Welcome to MSWorld!

Sorry that you have so much pain, hopefully you can get referred to someone soon and get relief from the pain!

This is a great place to come to for advice, comfort and understanding! Usually you will find a number of people that are or have gone thru the same sx as you are.

I would be lost without all my friends here.I just can't say enough good things about the folks and how they help me get thru the tough times, and smile with me when I have a good day too!

Hope to see you here often. And I will say prayers that you find some help for your pain. Kathy

[KoKo]

Hello Samantha

Nice to meet you

If I figured right, you've had MS since you were 20 yrs old. That must be very difficult having it so young

Having neuropathy pain from head to toe has to be frustrating and unbearable. So sorry you have this to deal with.

I wish I had an answer for you on how to make things move faster (your referral to a Neuro and pain specialist).

All I know to do is wish for you relief from pain, and a speedy process of getting the help you need. Please come back, if you want, and share what's going on next.

May you be blessed.

Take care,
KoKo

[fishead]

Samantha,
I am glad you found us here at MS World, and very sorry about your pain. I understand your anger and frustration at the docs not getting this under control. I find it an insult that they do not take our MS pain serious enough to employ some of that dang knowlege they got at "Doc training" to get us some drugs that work. Stick with your guns, about making your doc/neuro send you to a pain managment clinic. THOSE docs aren't afraid to give the meds required to rid one of horrible pain.

[freeinhou]

Wow Samantha. I really feel for you. My neuropathy pain started in 2007 and is limited to my feet and lower legs - I can't imagine all extremities. This is something people really have to experience to truly appreciate what living with it truly is like.

Cymbalta worked for me for about a month. Pain almost totally eliminated. Stopped working. None of the earlier generation drugs work (ie Lyrica).

Neuro's won't see me. I can't tolerate the "jab a needle under your skin" test, so they say they can't help me. I tell them I have MS but I don't think they believe me - even when I try to show them Radiologist's and Doctor reports from 1987-2003 which clearly state MS. I even try to show them my 2003 MRI films showing over 30 lesions but no - they want to do their $2,000 test in 30 minutes.

Sorry to vent here. I wish you the best.

Tom

[Samantha Burns]

I had an attack in early July & got 3 days of breathing room on morphine in the hosp. Still working on my Neuro referring me to a pain specialist. Now he has a fancy MRI that h did ... so I hope it makes him feel better. Though why anyone would lie about having MS is beyond me. I'm seeking help through a patients advocate. Hopefully it will sort itself out this month. Thank you for all your support.

[JamCakes]

Samantha, if you're near Southern California I would recommend USC University Hospital. Their dept of Neurology is one of the best, and they have an entire dept focusing on MS.

I have some neuropathy in my upper thighs. I've had it for two years now, sometimes worse than others. Burning, tingling numbness, pain on standing. My neurologist doesn't think it's related to my MS. Now she's a specialist in MS - researcher, professor, practicing doctor. I tend to think she is up on the latest about MS. But I question that - how could I have nerve problems that are not related to my MS?

I think that neuropathic pain is often related to Diabetes as well. I don't have diabetes but i have gained some weight, which could be making my thigh nerves strain too much? I don't know. Obviously I have electrical problems.

In any case, I find relief by placing ice packs (i use the frozen gel packs that my rebif is delivered in) on the back of my neck and in the small of my back. It just freezes/numbs my nerves & spine so that i do get some relief from the leg pain.

I'm sorry you're having such a difficult time.

[lexluther]

PAIN

MY NEIGHBOR ALSO HAS MS. SHE IS IN HER MID TO LATE 50'S AND WAS DIAGNOSED WITH FIBROMYALGIA BECAUSE OF THE EXTREME MS PAIN SHE HAD. SHE IS ON LYRICA AND LOVES IT. SHE IS WIDOWED, GOING TO SCHOOL, AND IS ADOPTING HER GRANDDAUGHTER AND DOES NOT HAVE TIME FOR EXTREME PAIN. YOU MIGHT LOOK INTO SEEING A PHYSIATRIST (NOT A PSYCHIATRIST) THESE ARE DOCS THAT DEAL WITH PAIN AND MOBILITY.

[Samantha Burns]

Not Diabetes

They do a nerve conductivity test (OUCH) & see if there is nerve damage (2 seperate tests both in my legs.) Both test say not diabetes & I have been tested for Diabetes. Also wouldn't my intake of sugar effect me? If not MS why does overheating make the pain worse? I say grill your neuro & get tested for diabetes just in case. Given what a chocolate fien I am ... I should be diabetic