These past few days I barely feel human~all kinds of odd things are happening to my body.
Background: I was recently diagnosed with a mild case of TM. I do have a lesion on my brain which can mean a high chance of going on to develop MS. But since my sx were subsiding, my neuro basically wrote me off with "no follow ups needed unless new symptoms present". My first attack was Feb 28.
Well, yesterday I called to tell him that my twitches are now turning into "jerks", my hand goes numb for a second when I turned my head quickly to the left (?) and I have an odd feeling of cold water dripping down my calf. Strange!
I also have very intense, deep pains in the muscle of various spots of my body (above the knee, wrist & elbow). Mercifully, they only last a few seconds. It's not the "pins and needle" sensations that I am used to. They are much deep, more intense and localized (imagine the width of a pencil) in the soft tissue spots, not the joints. Any idea what this is? muscle spasms?
My vision has been blurry at times but today my eyes seem to be shaking back and forth. When I close my eyes, I feel dizzy. What is that?
My neuro said "he's not worried". Well, good for him...but I am. He doesn't need to see me and I assume he thinks it's still the affects of TM.
I guess it's just a waiting game from here on out.
These are all new symptoms, right? If they're new ones that weren't around when you were diagnosed with TM, then I would start looking for a new neurologist.
The eye shaking sounds like nystagmus, which is a tremor of the eye. I had this for a long time - when I tried to focus on something, my eyes would jerk rhymically back and forth.
The pains you're having in the muscles could be spasticity, or spasms.
Some of your symptoms sounds like you've got damage in the spine, which could be a lesion, or just nerve compression. At any rate, you should be getting a thoracic and cervical MRI to check for damage and possible lesion formation.
Thank you for your answer.
Yes, most of these are new. I had numbness, tingling, brain fog and twitching before. I can't believe that there is a name for the craziness going on in my eyes. I will have to look that up.
I have to admit that I have been living in denial; just trying to pretend that my symptoms don't exist. I didn't even tell my dh. Therefore, I have not seen nor called in to my neuro since my initial consult. So I guess the fact that he blew me off again when I finally got up the courage to call, just kind of made me feel silly.
Sorry to hear you are going through so much. Jen is right....Run to a new neuro right away.
My GP dx'd my MS and sent me to the neuro the MS Society recommends here for a confirmation. He actually said to me "Well you have MS what do you want ME to tell you?"
He did prescribe my DMD, but I ran like crazy to a new neuro. Some people here have had to try 4 or 5 before they found one that would listen.
I walked into my new neuro's office and he asked why I decided to change. I told him straight up that my last neuro had terrible bedside manner. I am looking for a neuro that wants to discuss my disease and treatment and participate with me not just tell me what to do.
He sat with me, listened to me, and is very open in communicating with me and I love it.
Wow I am in shock that you were spoken to that way! I can't believe it. I wonder where along in their career that they lost compassion for their patients? Sad really when you consider how incredibly scary it is to just BE in a neuro office with neuro symptoms.
I am surprised that my neuro blew me off. At our initial meeting he sat and really listened to everything and came to the conclusion of TM. I have had a brain MRI (lesion) and a C spine MRI (normal) and loads of blood tests ( vit D low). But am still shocked that my new sx did not further warrant other tests like evoked potentials or something?
I have to second (or is that third) that you need a new neurologist, TM has me scratching my head in confusion (lol common event) because TM is a mini stroke, and you have long lasting sx which from my understanding means it isn't TM.
What Is a Mini-Stroke?
The term "mini-stroke" refers to a transient ischemic attack (TIA for short). In a mini-stroke, there is a short-term interruption in blood flow to the brain. This causes temporary stroke symptoms (often just for a few minutes), such as weakness or tingling in an arm or leg. Mini-stroke causes are the same as those associated with ischemic strokes. The only difference involves timing. By definition, a stroke produces symptoms that last for at least 24 hours. A mini-stroke causes symptoms that improve after a shorter period of time (usually within 30 minutes).
There is research on TM that is now stating that mild cognitive changes are evident in patients, where as TM was thought to have zero lasting affects. But what you are describing doesn't fit in with anything i've read regarding TM because you are still symptomatic. Do you see why i agree you need another neurologist?
BTW you are the only other person who is describing something i experience, the fluttering feeling in my chest, oh then pain. I've thought it was a mild muscle spasm in my intercostal ribs, fast rithymic spasm before a harder painful one hits, though it doesn't always go beyond the flutter. I have a lot of muscle spasms going on not only in my ribs but legs so it makes sense to me that spasms could explain it.
OK i've lost the plot LOL i saw TIA even though you wrote TM, (i have issue seeing caps), I think my brain just interpreted what i thought i saw. I can't believe i did that!!!! I'd delete it if i could because its all wrong, sheesh i've done the exact same thing before with TM and TIA. SORRY SORRY SORRY SORRY SORRY SORRY SORRY SORRY SORRY
I'm now going to go look for those missing brain cells!
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