cotmh

Hi, I have been diagnosed with a disease that is almost exactly like Ms, in fact the symptoms lists are so similar it is amazing. This might be long, but I hope you will read it and maybe clear up some things for me.

10 years ago I developed migraines and vertigo...I had a brain MRI I was tested and cleared of MS.

2006 - I was going to bed one night and an excruciating pain in my shoulder blade started, very intense. It went on for 2 months, it spread to my chest and then down my left arm. I saw many MD's none could explain it. Finally an MD gave me a cortisone shot into the shoulder blade and literally all heck broke loose, the pain spread from that point within weeks throughout my body. I had tremendous neuro pain, burning, shooting, stabbing, pins and needles and so much more. One nuerologist I spoke with (did not actually have an appt, we just talked) said that viruses HHV6, EBV had re-activated by the cortisone and although rare, I needed antivirals...which no doctor would give me, they just thought having viruses was too rare.

I had also at the time blurred vision, which has resolved, I had no reflexes in one leg, which has resolved. I have no 'sensory' problems...I feel everything!

I was led to an awesome Md who diagnosed me with a chronic bacterial disease (that is very simiar to MS and possibly treatable long term..I started on antibiotics and worsened,bu this was expected and I continue, this is when some issues started resolving). Then I stalled, progression just stopped, although I got no worse, I got no better.

I asked specifically several Md's if I could have MS ....they said no, but no real testing. I was scheduled for another brain scan, but didn't go through with it and have treated the disease I have for 2 years. Antibiotics make the pain 20 times worse.

This disease (and viruses were also proven later) is KNOWN for 'turning into MS'. I am at the point I wonder now if I have MS.

You are the experts....tell me if my symptoms sound like MS. I have much pain on the left side of my body, although it is everywhere, it is more predominant on the left side all the way down. I have polyneuropathy (everywhere) from scalp to feet that comes and goes, but I am never pain free...ever. I have horrible cerebellum (back of head) pain, neck pain, shoulder pain, balance problems, joint pain, sensitivity to warm baths it flares nerve pain, but not showers. Leg pain constantly, muscle mostly, sometime neuro and muscle, tingling that comes and goes throughout each day.

My main issue is polyneuropathy...some days are worse than others. Around "that time of the month" things can (but don't always) get worse. I never know day to day how bad I will feel. I am in constant pain - twitching muscles, burning muscles - all off and on different day to day.

I do methylcobalamin b12 injections (at high doses for almost 2 years) I was very D deficient, but that is being corrected and is likely normal now (I am due for another test) that hasn't seemed to help.

The disease I have has all the same symptoms - but my viral issues were a huge part of this my EBV titers IgG were 10,000 at one point, now 5,000 (I am on Valtrex) - and I know MS can be caused by bacterial/viral problems.

I also do not seem to be getting worse..I am just in pain all the time..2 years of this same thing...non-progressive, just stalled in this neuro pain state.

My questions:
Does an ANA blood test prove anything? Are there blood tests that indicate MS is possible?
Does this MUCH pain everywhere sound like MS?
Do antibiotics make the pain worse?
I thought MS was intermittent, this is not, it is everyday.
Steroids triggered the body-wide explosion - has anyone with MS heard of this happening?
I do not have other MS symptoms, bladder or bowel issues and no weakness. I look and act totally normal - but am far from it.

Any advice? Your help is appreciated.