Do I have MS or what else could it be?
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ems2resq posted:
I am a 42 yr old caucasion male. Almost 2 years ago, I was doing physical training with the army and thought I had injured my right shoulder. I went to the ER and was told I probably pulled a muscle and was put on 2 days bedrest. I followed up with the local military hospital and still had the pain. The pain started on my shoulder blade, near the spine and ran along the shoulder blade over my shoulder and down to my elbow. I was prescribed flexiril and percocet. After a month, the pain still hadn't gone away and now I was experiencing pins and needles in my fingers and my forearm was numb. I was sent to a neurologist who did an EMG on my arm. I felt a lot of pain on the left arm when they were performing the test, however, on the right side, I didn't feel much. The neurologist told me that the tests showed normal. My primary then referred me out to a orthopedist. All he would do was have me see him every month, he would refill the flexiril and the percocet. He also referred me out for physical therapy. After 4 months of PT, the therapist told me that he didn't think any improvement was happening and told the ortho that he believed the issue was in my T-spine. The ortho stopped the PT and continued doing what he was doing before with represcribing the flexiril and the percocet. After 7 months, I was no longer able to see the doctors I had been seeing because I was released from active duty military and referred to the VA. Over the next couple of months, more symptoms appeared, first I started having spasms in my right arm, then I started having spasms in my right leg, then began having spasms in my back from about halfway up my back down to the bottom of my back. I would have spasms occasionally in my left army and leg, but they were rare. I also started to have periods of blurred vision. When the spasms occurred while I was awake, I would try to stop them by either holding it down or trying to think it away, but neither worked too well and I would have to wait it out. When I was asleep, my girlfriend would wake up to one of my limbs spasming and she would try to find a pressure point to massage and she said that they would stop shortly after she did this. I was finally able to get into the VA 4 months later. The primary required me to have bloodwork done before she would refer me to a specialist. After another month, she referred me to a neurologist, however, I wasn't able to get an appt for 2 months to see him. She also changed my meds and placed me on baclofen, ibuprofen and tramadol. In between the appts, I woke up one morning not able to turn my head at all. I ended up going to the ER and they injected valium and percocet and after about an hour, I was able to turn my head. The next day, I woke up again unable to turn my head, I called my primary to set up an appt and was told to go to the VA ER that is 75 miles from me. Once I got there, the injected me with a steroid and morphine. This was the first time in over a year that I was completely pain free. They did an MRI of my C-spine and told me that I have cervical spinal stenosis, but not severe enough to cause the issues I have been having. They also scheduled me to have an MRI of T & L spine. They gave me flexiril, steroid, ibuprofen and percocet to take home. After the MRI, I saw the neurologist who told me that I also have mild scoliosis in both my T & L spine, but again, not severe enough to cause my issues. He also mentioned some spots on my spine that he believed to be fatty cysts. I mentioned my concerns about the possibility of MS and he placed an eye cover over my eye that had a pinhole in it and asked if my vision improved with the pinhole. I told him that it did, and he said that it definitely isn't MS. He referred me out to pain management and for an EMG again. He also changed my meds to baclofen, ibuprofen and tramadol. The EMG was again normal.
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ems2resq responded:
Since then, I have had the following symptoms all appear:

forgetfulness, primarily with short term memory
trouble expressing thoughts
trouble speaking
problems starting and stopping urine flow
bowel issues ranging from very hard to very soft stool
periods of lightheadedness and balance issues
weakness in my right (dominant) arm
severe pain in my right elbow if I try to lift any amount of weight (to include a cup of coffee)
constant ringing in both ears
constant pain in my spine ranging from mild to severe, increases dramatically with cold, relieves somewhat with heat
periods of a vibrating sensation on the bottom of my foot, feels like I am standing on a cell phone that is on vibrate, has happened on both feet but more frequently on my right
periods where it feels like my spine is swollen and I can't lean against anything without pain
constant fatigue

The spasms were continuous from this past January through June while on baclofen, ibuprofen and tramadol. In June, I was changed to flexiril, ibuprofen and tramadol and have only had spasms on 1 day, though I do occasionally feel my muscles tightening up like they did in the past just before the spasms.

I know that I need a brain MRI and a spinal tap to confirm MS, but I am looking for any other possible diagnosis' or any tips on how to get my doctors to go in a better direction.
 
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hackwriter replied to ems2resq's response:
Dear EMS2,

You're on the right track, getting the full work-up with brain and spine MRIs and a lumbar puncture. Part of MS diagnostic testing is a series of tests that rule out other conditions that mimic MS such as Lyme disease, diabetes, tumors, connective tissue diseases such as SLE/Lupus and Sjogren's, ADEM, various other autoimmune disorders, vascular diseases, B-12 deficiency, sarcoidosis, spine diseases, and the list goes on. (Do a search on: "Diseases that mimic Multiple Sclerosis" and you'll find lots of info to pursue.)

If flexeril and baclofen aren't giving you enough relief, it might take a few dose adjustments to make you feel more comfortable. Sometimes we might need a higher dose at bedtime if we seize up while sleeping, or we might need a higher dose during the day when we are most active. You could play around with the dosage yourself and experiment on your own, that's what I've always done.

My only advice about getting doctors to keep working on solving the mystery is to take it a step at a time. If they rule out MS, you've got to push your docs to keep testing, don't let them drop the ball. Do internet research to learn about what diseases cause your symptoms and start bugging your doc for specialist referrals. It's going to be a process of elimination and it might take some time. Hang in, be an aggressive advocate for yourself.

I hope you'll let us know the outcome of the MS tests. Good luck with your search, I hope you'll get some answers soon.

Kim
 
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Rory26312 responded:
Hi

Honestly I cann't read most of your first post but I am sure Kim gave you good advice.

On a different note there have been several Vet's on here and the all tell the same story about the VA ,it is adisgrace the way you guys are treated.

BTW the reason I am having troubles is because of the big block ,if you hit enter twice every few lines it will it will break it up,

Rory