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Pain Pain and more Pain....not diagnosed w/ anything.

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Posted 4/27/2016 4:46 PM (GMT 0)
My main symptoms since 2002, that come and go are:

SKIN PAIN (hypersensitive)
Burning on my skin
Feel bruised all over
Achy all over
Hands can ache....legs as well
Anxiety
Depression

Anxiety came first, I know that for sure. Had my first emotional break down after 9/11. Plus I was in a bad marriage (verbally abusive). Never supported in any form or fashion from my husband. I worked full time, took care of our son, cooked, cleaned, took care of the pool, yard, etc....and it was NEVER enough!

I will get my symptoms and they will last a few months and go away. Something stressful ALWAYS triggers them. They can go away for an entire year or two and come back. This is the worse they've been in a while.

I've noticed the weather "seems" to be effecting it. I'm in Texas and we've had a lot of storms lately. I went to bed feeling decent and woke up to a bad storm. My entire body was in excruciating pain!!! Like my skin is just sore all over!!

I've seen neuros, rheumies, GPs, endos, internal med drs, etc.! NO ANSWERS! Have had MRIs, blood work, EMGs, etc. Nothing! Last MRI (brain and c-spine) was in 2014. Was clear. Actually, the radiologist noticed some spots consistent w/ small vessel eschimic changes, but neuro said he didn't see ANYTHING on the MRI. That was odd!!! I had an MRI in 2005 as well (brain and c-spine) that was normal. Had a brain MRI in 2004 as well, normal. I also had one in 1996 (after diagnosis of Pars Planitis which is linked to MS).

I have an appt w/ a new neuro on May 4th. If this one says NO MS...I'm going to finally put it behind me after all these years. BUT....not sure what is causing my issues. They are VERY PAINFUL!!!!!!!!!!!!! Right now...my skin all over feels like it's on fire. My face and arms is the worst.

Does anyone have such horrid skin pain???

Thanks!
Posted 4/28/2016 1:13 PM (GMT 0)
Are the neurologists you are seeing MS specialists? If not, please considering seeing one. The spots that are consistent with vessel changes are suspect in my opinion. Bring copies of all your MRIs and the written reports to your appointment on the 4th. Ask specifically if those spots could be MS lesions. Do you have a history of migraines?

You may want to post on the Fibromyalgia board here. You share many symptoms with that disease. Your bruised and achey feeling isn't typical for MS. Skin pain can be caused by many diseases and disorders.

You may want to ask for evoked potentials (vision, hearing and extremities) which is a test of the central nervous system. You may also ask about having a lumbar puncture. Both of these tests were very helpful in my diagnosis.

While I have experienced some skin burning sensations, mine was related to a spinal lesion. My pain was irritating but not awful. I experienced it for a few weeks after an acute flare. Then it slowly subsided.
Posted 4/28/2016 2:03 PM (GMT 0)
Thanks! I saw an MS specialist in 2005. I saw him twice. The first time he didn't even feel he needed to do an MRI because he had one from 2004 that I had done by my GP. I went back to him again w/ the same symptoms and he sent me for a brain and c-spine on a 3.0 Tesla machine and it was clear. My neuro exams are always completely normal as well.

This 2014 scan that the radiologist said there was some spots consistent w/ small vessel ischemic changes, the neuro I was seeing then said he didn't see anything at all on the images. He even showed them to me on the screen. He pointed out two areas that he said could have been what the radiologist noted, but that they were more of something do to a possible movement on my part during the scan.

I started getting migraines (3-4 a year) in 2013, I believe. So...just prior to that last scan, I had started getting them.

I will make sure that this neuro I'm seeing on the 4th has everything he needs.

What symptoms sent you to your dr?

This started in 2002 and I have seen 3 neuros, an MS specialist, 2 rheumatologists, 2 endocrinolgoists, 1 internal med dr, and a couple of GPs. Nothing! Blood work, EMGs, MRIs.........

Thanks for your reply!
Posted 4/29/2016 1:03 PM (GMT 0)
I've never understood why doctors don't do evoked potentials in addition to EMGs. One tests the peripheral nervous system. The other is a test of the central nervous system.

My story goes like this: I woke one morning to mild vertigo. I visited the doctor and we figured I had an inner ear infection. Of course I didn't respond to antibiotics. 3 weeks late the vertigo was so bad I was wall walking. I was admitting to the hospital. I stayed for 4 days. While there I had an MRI. Lesions were found. It took a few more weeks and a few more tests and I was diagnosed. My tests were MRI of the brain and spine, a lumbar puncture, blood work, a thorough neuro exam of reflexes and an evoked potentials test for vision, hearing and extremities.

My general neurologist assigned to my from the hospital made the initial diagnosis. I was sent to UCLA MS clinic for a second opinion. My neurologist there said MS. I was started on copaxone a few weeks later. That was not quite 10 years ago.
Posted 4/29/2016 1:26 PM (GMT 0)
How are you doing after 10 yrs, Gretchen?

I had a time in about 2002/2003 where I felt like I was being pulled to the right for a couple of weeks. I didn't go to the doctor. But I have had 3 or 4 MRIs since.

turn
Posted 4/29/2016 1:49 PM (GMT 0)
Your only symptoms had been vertigo?
Posted 4/30/2016 4:08 AM (GMT 0)
Yes. Upon diagnosis, my only symptom was chronic vertigo and the balance issues that go with that. After 10 years, I've collected some more based on some additional flares I've experienced. The skin on my lower legs and feet is numb. I've had some vision issues; was legally blind in one eye for a time. It's back to normal now. I have issue with fatigue. I have bladder and bowel issues. But over all I'm quite functional. I still work full time as an elemtary school teacher.
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