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Multiple Sclerosis Message Board

Multiple Sclerosis Board Index

Hello, this is my first time posting as I just found this page while looking for support.

here's my story:

I've been having some health issues over the past few years that doctors have sorta chalked up to unexplainable. In the past 6-8 months I've developed symptoms that have started to take a toll on my every day life and I suggested to a neurologist that I suspected that I may have MS. This was all brought on by a shoulder/neck issue that no one could solve. It was causing numbness in my arm, weakness, shooting pains, etc. I had a spinal MRI to check for any slipped discs pressing on nerves and it all came back clear.

I was then sent to a neurologist to begin looking at nerve disorders. When I went to my first appointment and described the symptoms that I deal with on a daily basis (will list below) the neurologist was a bit surprised and ordered a brain MRI to rule out any lesions (my spinal MRI did not show any lesions) he also ordered a EMG test which I have next week.

Im away on vacation and got the call two days ago that my MRI did indeed show three lesions in the white matter. My doctor was quick to say "it could have been a virus...we don't know... Blah blah" when I called him back and spoke with him I asked him if it could be indicative of MS and he said, yes it could and the lesions could be from the first attack. As I mentioned I have the EMG next week with him so he said we would discuss everything at that appointment. I mentioned meds on the phone (I know that's really early but I panicked) and he said "well they are life long drugs and the are pretty heavy duty so we'll discuss". He also said, I will order another MRI for 6 months to see if any new lesions appear.

I am a strong believer in being my own best advocate and I do not want to put my head in the sand and ignore this. My symptoms affect my daily life and I would rather push for a diagnosis and meds to slow progression rather than take a wait and see approach.

Can anyone offer any advice as to how to approach this appointment and make sure that I am doing everything I can? I do not want to live with symptoms for 6 months while we just wait and see. I want it make sure I give myself every chance to stave off additional issues!

Symptoms and duration:

Vision issues - blank spots appearing in my vision, usually lasting about 30 mins. Reminds me of looking at a light bulb and then seeing a blank spot. Does not turn into a mirgrane or progress, just a blind spot. This happens about 2-3 times a week now and has been happening for over a year

Tremors - my hands shake all of the time. I have issues grasping things and writing/ painting because I cannot steady my hand. I do a lot of painting and drawing and it's gotten so bad that I currently can't work on projects because I just shake too badly to produce the work I want.

Grasp - my hands are weak and I often drop things because my fine motor abilities seem to have diminished greatly

pain - I have a lot of pain and soreness in my joints which include my knees, hips, fingers and toes.

Headaches - I am a long time sufferer of migraines with auras, which are controlled by medication taken at the time of onset. I usually end up with a tension headache daily or every other day in the back of my skull/neck.

Fatigue - perhaps one of my worst symptoms. On weeknights I sleep for 9 hours and every day need at least an hour nap to get through the day. On weekends I try to get more sleep and often sleep 10-11 hours and then also nap in the afternoon. I usually sleep through the night but will wake up in the morning feeling like I haven't slept at all. I swear I could sleep all day long if I didn't have any responsibility. If I'm active at all one day, I pay for it the next day with stiffness, pain and extreme fatigue.

Memory loss - I have always had an excellent memory. I can recall events as early back as two years old. In the last 6 months I've had these short term memory zaps where I cannot remember details, I forget things unless I write them down and review them constantly. I will be talking and lose the words and just blank out on what I was trying to say. I also blank of names of people I see on a daily basis for years. It's embarrassing.

Numbess - I have a loss of sensation in my feet, hands and right arm. I also have large spots on my shoulder blades that numb to the touch but are painful on the inside.

Zapping - I don't know how to describe this but if I leave my feet idle, I feel what feels like electrical zaps going down through my toes. As a result to fall asleep I've compensated by paddling my feet back and forth because that stops me from feeling the zaps. The zaps don't hurt but they are uncomfortable and I do my best to not feel them.

Episodes - so I was in the ER maybe 6 months or so ago with a very bad episode of vertigo. The vertigo was so intense and I already suffer from anxiety that I ended up with chest pains. This was chalked up to an incident of vertigo at the time. Also at the beginning of the year, (separate from the vertigo) I had was seemed to be a severe knee injury. The only problem was that I never injured myself. Orthopedics did an MRI and multiple tests and they couldn't find anything causing the pain and weakness. It got so bad that I ended up on crutches because I couldn't stand on my leg without my knee buckling and falling. I lost ability to walk on it. Eventually after about 8 weeks, the pain subsided and I was able to start to walk again. No cause was every found. They are now looking at these two incidents as possible MS incidents that could have caused the lesions.

Family history - my paternal grandfather had MS

Anxiety - I am a long time sufferer of anxiety and have been on fluoxetine with great success for about 4 years.

My doctor out me on gabapentin for nerve pain and I'm currently on 900mg total per day. It helps me feel better when it kicks in, but my symptoms are still present.

If you made it this far, thank you so much! I would love to hear your opinion or advice as to how to approach appointments in the future, specially pushing for a diagnosis since I have lesions and a boat load of symptoms. I'm just not a wait and see type person! Thank you so much!

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