Ok so I have been away for a while. I just needed to get this out....
When my first glaring symptoms started in March of 2011 (l'hermittes, leg weakness after walking more than several feet) it took a year for the neuro to say "Ok lets try DMDs, very probably MS".
Then after 6 months of treatment, I stopped taking the DMD (Avonex) because I became needle shy. I was fine in the beginning, but got a couple needles stuck in my leg muscle (i think i was tensing up) which freaked me out. I could not give myself the shot anymore and used excuses to put it off.
[Original dx was due to 2 spinal chord lesions, 1 enhancing, o-bands in spinal fluid, negatives on the tests for other autoimmune disorders. No brain lesions. Still the neuro put me on DMDs.]
Biogen called my neuro and told on me (I had not ordered more meds). So doc took me off and said maybe you just had Transverse Myelitis or a CID. I had no brain lesions, only spinal.
Fine. Good. Great.
So fast forward to Feb 2014 and I get what I think might be Trigeminal Neuralgia, and a lot of all the weird parasthesia, and tingling, numbness, and weakness in my legs when I walk for too long has come back too. I NEVER EVER GET HEADACHES. I know that's bizarre, but it is very true. Now I am popping ibuprofen daily to keep that intermittent, inconsistent, stabbing pain in my head away. The "TN" is in my scalp near hairline, not in face. But pain sometimes when I swallow, blink, touch face or hair.
Called neuro and he wants to do MRIs (brain, cervical thoracic). I asked him if people can have MS and have spinal lesions only. I have heard this can happen, though its rare. He said "not really". Ok....great now I don't know what this is.....again.
I know something is off inside of me to have all these weird tingling, numb, weak, itching, hot flash sensations that travel over my legs. In my head there is a sharp stabbing pain that is random and makes my eye twitch. My head hurt so bad that I could not even brush it when this started several weeks ago. Now that's gone and there is an on and off itchy feeling, that is driving me bananas (I checked for dandruff, dry scalp). Still intermittent stabs of pain. Waiting now to see if I have a brain tumor, TN, more lesions, ect ect. Who knows what this really is?
I thank you for allowing me to rant. I am grateful there is a place I can let go of my frustrations. And somehow I bet someone will write back and say that they know exactly (or near enough) what I am talking about.
Thanks MS World for listening and understanding!
-See
(see u in Connecticutt)
Dx-2012; then back in limbo 6 short months later
Avonex for those 6 months
Currently baffled....
When my first glaring symptoms started in March of 2011 (l'hermittes, leg weakness after walking more than several feet) it took a year for the neuro to say "Ok lets try DMDs, very probably MS".
Then after 6 months of treatment, I stopped taking the DMD (Avonex) because I became needle shy. I was fine in the beginning, but got a couple needles stuck in my leg muscle (i think i was tensing up) which freaked me out. I could not give myself the shot anymore and used excuses to put it off.
[Original dx was due to 2 spinal chord lesions, 1 enhancing, o-bands in spinal fluid, negatives on the tests for other autoimmune disorders. No brain lesions. Still the neuro put me on DMDs.]
Biogen called my neuro and told on me (I had not ordered more meds). So doc took me off and said maybe you just had Transverse Myelitis or a CID. I had no brain lesions, only spinal.
Fine. Good. Great.
So fast forward to Feb 2014 and I get what I think might be Trigeminal Neuralgia, and a lot of all the weird parasthesia, and tingling, numbness, and weakness in my legs when I walk for too long has come back too. I NEVER EVER GET HEADACHES. I know that's bizarre, but it is very true. Now I am popping ibuprofen daily to keep that intermittent, inconsistent, stabbing pain in my head away. The "TN" is in my scalp near hairline, not in face. But pain sometimes when I swallow, blink, touch face or hair.
Called neuro and he wants to do MRIs (brain, cervical thoracic). I asked him if people can have MS and have spinal lesions only. I have heard this can happen, though its rare. He said "not really". Ok....great now I don't know what this is.....again.
I know something is off inside of me to have all these weird tingling, numb, weak, itching, hot flash sensations that travel over my legs. In my head there is a sharp stabbing pain that is random and makes my eye twitch. My head hurt so bad that I could not even brush it when this started several weeks ago. Now that's gone and there is an on and off itchy feeling, that is driving me bananas (I checked for dandruff, dry scalp). Still intermittent stabs of pain. Waiting now to see if I have a brain tumor, TN, more lesions, ect ect. Who knows what this really is?
I thank you for allowing me to rant. I am grateful there is a place I can let go of my frustrations. And somehow I bet someone will write back and say that they know exactly (or near enough) what I am talking about.
Thanks MS World for listening and understanding!
-See
(see u in Connecticutt)
Dx-2012; then back in limbo 6 short months later
Avonex for those 6 months
Currently baffled....
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