diagnosing ms and pain

[sarahw244]

Hello all.  I hope everyone's new year is treating them well so far.  I have two questions I am hoping someone can answer.  I'll try to keep this short...
1.)  I actually asked this question before, or at least something similar.  Anyways, I was seeing a neuro who was going to dx me if my LP would have come back positive for O-bands.  It came back negative, so no dx from him.  After a few more visits with him and very little symptom management, I decided to seek the opinion of an MS specialist.  This turned out to be a bust.  I only saw the physicians assistant who said nothing to me but that she thinks I have fibro.

After hearing this and trying to keep an open mind, I decided to see a physiatrist who is an expert in fibro and also pain management.  He said I definately have fibro.  But he also said that I definately have something neurological too.  He said that he would be consulting with my 1st neuro and get back to me.  After supposedly talking with the neuro and reviewing my MRI's, he said I definately have MS.

So my question is...can he give me the definitive dx or does that have to come from a neuro?  I am not under the care of a neuro right now, as I feel I was not being treated for my symptoms.  I guess I just don't understand how a neuro can say they don't think it's MS but this physiatrist say it is.  He was on the MS board in my state for like 15 years and after talking with him, he sounds like he knows enough about it, but I am just confused.  I know after being in limbo for a few years and being part of this forum that dx'ing MS isn't easy, but it just seems like it should be.  I don't get it that one doc says no, the next one says yes, the next one says maybe, and so on...

2.)  I have been living in constant pain for at least 3 1/2 years now and it is getting really overwhelming lately.  This physiatrist I've been seeing said that part of it is from the fibro, but that part of it is from the MS.  So my question is...does anyone else here live with constant pain?  If so, what do you do about it?  I am open to just about anything.  I am currently taking schedule pain meds, along with something stronger for breakthrough pain, but it just doesn't seem like it's working like it should be.  Around the clock pain control would be great!!!  Anyone on a pain patch and does it help?

Thanks everyone and sorry this is so long.  Take care!  =)
Sarah

[Sidesteps]

Sarah, contact Starreyeyes - she's actively posting on the forum right now. :)

[anon07072023]

Sarah, another thing that you need to consider (which I'm sure that you probably already have) is the dosage that you are taking. They initially started me out at a low dosage of Baclofen (I think it was 20mg a day).  Then they changed it to 30mg a day. Now I'm up to 60mg a day, and I still get break thru pain during the day.  Baclofen has helped me the most out of all the meds that I have tried so far.  I'm not sure why you have an easier time getting the Percocet over the Baclofen.  

Take care,
Kelly

[sarahw244]

Thanks for all your responses!  I have had pain for so long it is getting sickening!  I have tried many things for this pain, most to no avail.

I am currently taking cymbalta, tramadol, percocet for the breakthrough pain, nortriptylne (sp).  I have also tried flexeril, which did nothing, lyrica, neurotin, hydrocodone, and baclofen.  The baclofen did wonders, but for some reason I have an easier time getting percocet than baclofen.

I had an episode a few weeks ago where I was having excruciating muscle spasms in my hips.  It was one of the top 3 most painful things I have ever experienced!  So I know I can say that muscle spasms are causing some of my pain.  No one can seem to figure out what has been causing my chronic leg pain.  

Maybe this is something I just need to learn to deal with, but I can't honestly see how anyone can live like this.  When it gets really bad, which it has been for a few weeks now, I just can't imagine going on like this.  I would never do anything, I just get soooooo disgusted!  I can't play with my kids properly, I can barely go to the store, etc.  I forget to take my meds, and then WHAM!  The pain gets out of control and it's really hard to get back under control.

Anyways, thanks to all who responded.  I would be interested to see if anyone else here has been diagnosed by anyone other than a neuro.

[Tracy102]

Hi Sarah - so sorry about your constant pain. I have MS & Fibro as well. I had my first MS attack almost 17 years ago - optic neuritis, yet it still took NINE years for a confirmed diagnosis. MRI's just weren't as accurate in the early 1990's. I struggle with a list of symptoms, but pain and fatigue are at the top of my list. Apparently not all MS patients deal with a lot of pain, some deal with more numbness and tingling. I've had painful tingling as well. I take Neurontin and Klonopin which seem to be a good combination for the pain and spasms. Many people have switched to Lyrica which is a very similar drug to Neurontin, just not a drug originally prescribed for seizures. Lyrica has been very successful for Fibro patients as well as MS patients. I am currently taking Tysabri, another hot topic, but it definitely helping me with my pain and balance. I was in my 20's with a 6 month old baby when I had my first episode, so now that I am in my 40's, I feel like a could write a book! Finding a good neurologist is KEY. I would NEVER agree to see a PA, only a board certified neurologist that specializes in Multiple Sclerosis. (I am a board certified RN!!) It is extremely important to get intervention as early as possible. I live in Kentucky and I have traveled to Indianapolis for a great 2nd opinion. Look at your state university or call the local National Multiple Sclerosis Society chapter. If you live in a small town, just call or go on line for the largest city close to you - this is a great place for a good referral for a neurologist.I have never used this forum, so I hope I can figure out how to get back to this site to see if you respond!! I will join the community and watch.

Take care Sarah, I pray you find answers and help soon!

Blessings,

Tracy

[anon07072023]

Hmmm, that is a good question - I'm not for sure if your MS diagnosis has to come from a neuro, or if a physiatrist can give you the diagnosis.  It does seem like there seems to be a wide array of how people are diagnosed.  Some take yrs, and others are diagnosed on the same visit - yet, some of these people have almost the exact same things going on.  I don't really get it either.  Sometimes, it just seems like there's no consistency between neuros.

I do have constant pain in my legs & my hips, and off and on in my lower back.  What has helped me is increasing my Baclofen dosage.  I'm not for sure what's causing your pain, so not for sure which way to direct you. My pain is caused from spasticity.

Good luck with everything,
Kelly

[Sumanadevii]

Sarah

For chronic I try many different things.  Yes, I use small dosages of narcotics but I am well aware nothing is going to make me pain free.  It only takes the edge off.  I add meditation at times.  My husband uses prayer.  Both are distractions that bring you away from the pain.

Others on the board have used massage therapists acupuncture, and hypnosis.  Many report good things with this.

I also would stress it is very important to stretch your muscles from head to toe daily or twice daily.  It will help relieve some of the pain.

Others will be adding their ideas.  I hope you find a few helpful.  Pain is part of this life and personally I want "out"...lol

Wishing you the best,
Sumana