Just Dx. but having doubts

[Pressednotcrushed]

Hi, I posted a few months ago as a limbo-lander but my account somehow was eaten by the internet. Yesterday I had my first appointment with my MS specialist.

I will try to give a quick rundown of my history. September last year I was at the local big fair in the area and one of the vendors had me try out his weight loss machine. Right away my hip and knees started hurting and I got off the machine in about 30 seconds. I walked away but my legs were in a lot of pain. 10 minutes later I couldn't walk my hips and knees wouldn't hold me upright, I could sort of duck walk but it was painful. I thought I had injured my knees. A week later after much icing and ibuprofen I realized that it wasn't going to go away. My job was as a caregiver (for a woman with MS) and the pain and weakness made it very difficult and during transfers dangerous. I took a medical leave after 3 days of trying to work. I went to the ER and the Dr. said she thought I had tendonitis and perhaps a torn ligament in my left knee.

Under that impression I sought out and gained state medical insurance and was forced to quit my job completely instead of being on medical leave. A bunch of x-rays and manipulation tests led the the conclusion that there was nothing wrong with my knees. I started to figure out that my pain was from the muscles pulling on my joints.

I have pretty constant spasticity in my legs. I spent most of my days laying on the couch for several months. When my Dr. prescribed a muscle relaxer I felt better and was able to move around for 10 - 20 minutes at a time depending on the day.

I had several test that seemed to rule out, lyme, lupus, etc. but we didn't know what it was. It wasn't until December when half of my face went numb that MS came into consideration. The ER doc brought it up when I went in thinking I may be having a stroke. I hadn't thought that the occasional numbness in my arm and legs or the random burning patches of skin were symptoms.

Eventually I convinced my GP to send me for an MRI of my brain. He was sure that my symptoms could not be from MS. When the MRI came back with 4 spots he sent me to a neuro. She said she couldn't rule out MS but didn't think it was as the spots (No one has called them lesions) were all on the left side of my brain. She sent me for a cervical MRI and a LP. The cervical MRI was clear and she said the the tests from the LP were mixed - One was positive, one was negative and the third was just barely negative. She said she was uncomfortable saying yes or no to MS and sent me to a MS specialist.

I had to wait a few months for an appointment and during that time I began to think that I didn't have MS because it seemed like the medical evidence pointed to not having it. I became convinced my symptoms were coincidence and that multiple medical issues were going on.

Yesterday I had my first appointment with the MS specialist. I went in thinking he was going to say that I did not have MS and was somewhat shocked when he said it was. I told him I didn't think it was MS because that was what the other doctors seemed to think. He said that if it looks like a duck, acts like a duck, etc that it is probably a duck. He asked about burning sensations before I even said anything about them and seemed to be the first Dr to listen to me about the pain in my legs being muscle related rather than joint pain. I am somewhat relived to have a diagnosis but feel unsure if this is the correct one.

Since I was a caregiver for an MS patient and early on thought this could be my Dx I knew a little and when asked about a DMD I said I was familiar with Copaxone and that felt like that would be a good one to try first.I am supposed to start Copaxone as soon as my insurance approves and the nurse comes to show me how. I am a little nervous to start it until feel better about the DX.

What do you guys think I feel like my symptoms fit but they are far from what I understand to be the most common progression of the disease. I know MS affects everyone differently but I guess I am filled with doubts as I was blindsided with the Dx. I think I am still in a bit of shock that what I felt I had has been confirmed by the expert (MS specialist) but dismissed by my GP and Neuro.

I am thankful that my time in limbo-land was short. I was going crazy without having a name to put with the pain, weakness, balance issues, spaciness and burning patches of skin. I feel like I shouldn't want to go back to limbo-land. I guess I need reassurance that the symptoms fit and that the abnormal placement of the spots on my brain don't rule out MS.

[gomer]

WoW Crushed..........

.....many here have fought long and hard just SEEKING an answer. Some might even wanna TRADE your answer for a limbo island ticket.

I had problems going back to about the age of 12, electric shocks since 13, diplopia since 18 blah blah blah. I sought answers back in the 80s, that got me a ticket to the shrink dept, who spit me back out, not nuts not even depressed, but alas to no avail. I quit seeking answers for decades, I KNEW something ELSE (I am diabetic also) was wrong.

Then a couple years ago a new eye doc opened the MS can-o-worms, my famdoc called me for a MS, it fits talk and the next day I was seeing a neuro. Several neuro docs & clinics later, the doc said "you have RRMS".. then he added, you are not suprised are you?

NO I was not surprised, in fact it was connecting more dots in my medical history of 50+ YEARs than I ever imagined, answered more questions than I ever dreamed would be answered.

Whatever you have, YOU HAVE... whether it's been tested and Dx'd or not. What a formal Dx of MS meant that instead of wondering WHY, I was able to begin fight a good fight.

Gomer Dr. of, Been There, Done That