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New, suspected MS
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Sb456 posted:
I have finally decided to join a discussion board because I just don't know where to go for any support or advice.

I'm 28 years old and am starting week six of widespread symptoms that mimic MS. They suspected MS early on and an MRI was done...normal. I also had x-rays of my neck because I have alot of pain there. Some slight spurring and wedging showed up around my c5 and c6, but the doctors aren't concerned about that at all...said it's very common.

I have neuropathy that affects every part of my body...more so on the left side and very noticeable in my face, scalp, hands, feet, legs, etc.

I won't bore you with all my other issues but just briefly they have included: increased heart rate, higher than normal BP, vision problems, back of neck pain, ringing in left ear, etc.

I have had tons of bloodwork, all which was normal. They even tested for Lyme disease. My EMG test a couple weeks ago was also normal. I was shocked. I thought for sure this would point us in some direction.

I had been seeing a physical therapist to see if he could help with the neck pain, but it was just making it worse and my PCP says to hold off on that until we figure out the cause.

The nuerologist (I'm on my second one) has ordered a Visual Evoked Response test...I have that this week. Due to other problems/symptoms, I'm also having a pulmonary function test (because of my abnormal EKG) and a hearing test.

I had remained off medication all this time until last week when he prescribed Lyrica. Ugh. If I never had to function, it might be great. I have even more problems driving now (most times I don't now). I have had problems with short term memory and difficulty concentrating. I don't know if thats from the drug or from whatever is wrong with me.

Dealing with all these doctors and insurance issues has been stressful. My symptoms change so much and involve so many different parts of my body, that I have been keeping a daily journal since April 25th. I have typed these up into charts for the doctors.

The neurologist didn't exactly say he still suspected MS, but I'm assuming this is the case since he kept asking about my MRI results (they had lost them for a bit) and even looked at the CD. Then he ordered the VER.

If I *do* have MS, why was my MRI normal? The first neurologist blew me off after that and said, "You don't have MS, you're fine." That was just week 3...things have progressed a great deal since then, too! I am so tired of feeling like crap. I can't function, most days I can't even drive (especially now with the Lyrica). I graduated from college last week and should be excited about getting a job, etc. Instead I am having test after test that just keeps coming back normal. On top of that, I'm not even supposed to see the neuro again until September.

Any advice or tips you have would be great. I hope this board will be a good source of support for me. My relatives have been helpful, but they are also worried. Some are encouraging me to see a chiropractor or seek alternative medicine, etc. I just don't know what to do!

Thank you in advance!
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Rory26312 responded:
Hi SB

Three questions to start 1. was your MRI done with contrast ,it is injected in to your arm during the test. 2 have you had an MRI of the cervical spine and 3 have you had a spinal tap or lumber puncture.

The contrast helps show active liasions. It is possible to have liasions on the spine but not the brain. the SP looks for bands in the CSF that indicate MS .

These three are the usual tests for MS along with a complete neuro work up.

A "normal" MRI is possible with MS but the usually turn up sooner or later.

For now call your neuro and see if you can get him/her to schedule further testing before September as this is too long to wait.

Hope this helps and let us know how you are doing

Rory
 
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Sb456 replied to Rory26312's response:
Thank you so much for your reply. The mri was not done with contrast. I have pointed this out to them and no one seems real concerned about that, except me. I did have the mri of the brain and c-spine. I have not had a spinal tap. Suprisingly, no one has mentioned that yet. I want an mri with contrast done, but how can I convince the doctors to do one? How much worse do I have to get? Just last night and today I noticed a bump and some swelling or inflammation at the base of my skull on the left side (with some pain). Ugh. For now all I can do is add it too my list of daily symptoms. I will see my pcp well before the neuro again. Perhaps I can talk him into another mri? Thanks again.
 
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roberlyn replied to Sb456's response:
yes, you should have the MRI with contrast. tests without it are not accurate for MS. as for whether your symptoms mimic MS, i'd say SOME of them could, but some of them can't be attributed to MS. increased heart rate and higher than normal BP are probably not MS symptoms. in fact, the higher BP can cause visual disturbances and ringing in the ear (i think) all by itself.

that's not to say you don't have MS or you do ... i'm sure you know only a doctor can tell about that. but it sounds like your doctors don't really think it's MS. otherwise they'd be on top of the correct tests (spinal tap, MRI with contrast, etc.)

where do you live? is there a good teaching hospital nearby?

and finally, congrats on graduation! i know it's a bummer to have to deal with this stuff when you should be on top of the world. i started my MS journey in college too ... it definitely grounds you.

good luck! keep pushing until you have your answers! and if you find the lyrica is causing just as much annoyance as being without it, you don't have to take it. talk to your doc about that.

robyn


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