Asking your opinion

Hello I have not been diagnosed with ms but am showing some symptoms I wanted to know if you think it’s possible or if I’m grasping at straws

I first started having pains in August of 2004 when I was 18. It happened everyday for a month, I would to my sister’s school to pick her up (it was in the neighborhood 2 houses away) and couldn’t move my legs and that particular body part for hours. It started in my left foot and I only had pain there for the next few days after that the pain moved to my right foot and I only had pain there. After that it moved to left leg then right leg followed by my back then left arm then right arm.  The last week it worked it’s way back down for in reverse, arms, back legs then feet. After that I had no problems until April 2005 when I had my first seizure. My pain came back again in June 2005 after spending the day at Knotts Berry Farm (amusement park in CA) my legs started hurting and I ended up doing some sort of waddle.

After that I just had periodic calf pain every few months and then my second seizure in November 2005. I got a job at Target around that time and my leg pains started getting worse and more frequent, I saw a rheumatologist who did some blood work and said if we call you on Monday you have lupus if we don’t you’re fine. I never heard from them so I called anyway and the test was negative. I had my third seizure in April 2006, I had it in front of someone this time so we finally knew it was a seizure versus the first two where I was alone. I’m pretty sure my neurologist did an MRI abut I’m not positive it was 12 years ago so I don’t remember. He diagnosed me with epilepsy and sent me to another rheumatologist for my leg pains. After testing me for lupus three times and it coming up negative he told me he was diagnosing me with an “undiagnosed autoimmune disease” which I guess means “I think you have autoimmune disease but I don’t know for sure” he put me on plaquneil and tramadol. I never had the butterfly rash that goes with lupus. After that it was just getting medication and periodic blood work which never came up with any answers. 

I occasionally have trouble breathing and my muscles would get weak sometimes mainly my arms. Sometimes my hands and feet turn a grayish color from lack of blood flow.  I have joint pain, mainly my knees and the nerves in my back would get so sensitive that I would get pain electric shock feeling pain from loose clothing, if people stood too close or even from air blowing on me. The doctor told me the reason I was turning gray was Raynaud’s which I didn’t agree with because it would happen in the summer times and wouldn’t always happen on days when it was really cold. Eventually I just stopped talking to my doctor about my symptoms because after so many years I just got sick of no answers and just stuck with my medicine. 

I moved to Texas in 2009 and saw the rheumatologist once. He took 11 vials of blood said everything came back fine and not to come back unless I got new symptoms. He also took me off the plaquniel, he said it wasn’t really helping me I just thought it was. I haven’t seen a rheumatologist in 9 years. My eye sight got worse a few months before everything started when I was 18 I never needed glasses before until then but I have never had pain in my eyes or balance issues although I have always been clumsy.

I never really thought about it being ms until about 8 months ago when I had muscle spasms I guess. My legs pulled up towards my body and would go back down again and my back arched away from the bed. I don’t remember if it hurt or not. I’m so used to being in pain now that it really doesn’t register anymore. After the spasms ended I couldn’t feel anything at all, I felt like jello. I had to have my husband roll me over and massage my legs before I got feeling back. The spasms have happened about 3 times. My right hand has started shaking if I’m not using it. If I move my hand it doesn’t shake it’s only if I’m not doing anything. I can’t stand for more than 30 minutes before I start to feel my legs go. It’s a hard feeling to discribe. When we went to the zoo in May I started hurting after about 30 minutes by the time we hit the 2 hour mark I couldn’t move my legs at all. They just dragged across the ground, we timed it and it took me an extra 6 minutes to catch up to my husband and kids. I’ve had pain on the left side of my chest and at the same time the electric shock feeling that comes in intense waves. I also get short of breath when that happens. I saw a cardiologist but the ekg and echo came back fine. I didn’t mention the tremors or leg spasms to my neurologist who I see for my epilepsy because I thought it was rheumatology thing. My very weary of new doctors after seeing the last rheumatologist 9 years ago. 

Also the last few months I’ve been forgetting things. You know how you go in a room and forgot why, that happens every few days multiple times a day. Sometimes I can remember if I think about other times I have to ask my kids if they asked me to get them something. I’ve always been good at spelling and have had a large vocabulary but I’m forgetting the words I’m trying to use and how to spell words I used to know. 

My last blood test came back with crazy low levels of vitamin D and a high platelet count. I’ve never been told of any vitamin deficiency except this last one in April where my vitamin D was low.  

I just want to know what you guys think since I’ve had this for 14 years and I’m getting worse and still don’t have any answer other my epilepsy. 

Thank you in advance for your input 

Have a good day 

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