Hi there,
Im Kasey from California. I was diagnosed with Transverse Myelitis in Sept. Of 2014, RRMS two weeks later. Went in the hospital barely walking. Came home on a walker, graduated to a cane, now on my own. Some days I pinball on the walls of my house, but what can you do
Actually, I have two Neuros, one is adamant it's RRMS, the other says "Clinically Isolated syndrome." Both outcomes the same though, they both want me on a DMD. MS Neuro says forever, CIS doc says 5 years. I would rather believe the latter of course.
Its definitely been a trip. The TM began slowly, both feet numb. Over the course of about 10 days, it moved up above my waist. Had to go to one urgent care and 3 different ERs to get the correct diagnosis. (First hospital actually sent me home calling it a bladder infection?)
3rd hospital caught it. I had an MRI there of brain, thoracic and lumbar. The TM was at T8. No lesions in my brain. Lumbar puncture was positive for oligiclonal bands, hence MS dx. I was in the hospital for a week on high dose steroids.
I had another MRI a few months later showing a lesion on my cervical spine. Thing is, I was a chicken and opted for an open Mrai (deathly afraid of the tube)... The films were horrible and I got yelled at by the second Neuro. The radiologist that read the films didn't even compare to the old. Said negative for TM, but the lesion on the C-spine resembled an "astrocytoma."
It took over a week and several calls to my Neuro to see the report. (I made the mistake of looking at it myself first.) Lets just say there was a week there of a lot of crying, no sleep, lots of Xanax... Neuro said he is 99.999% sure that it's just an old MS lesion and proceeded to teach me a lesson about open MRIs. (I have had l'hermittes for at least 10 years... Never knew what that was.)
Anyway, I decided on Tecfidera. I couldn't get past the full dosing. Made me real sick. Stayed on one 240 a day for a few months but just didn't feel well ever. I got heart palps, massive fatigue, pain... And in turn a visit to cardio, other Drs etc. ended up with a pill for EVERYTHING.
So... I just got fed up. I stopped pretty much every med. For the last week, I sit here on pretty much nothing other than Vit D, magnesium, and a rare small dose of Tramadol of absolutely needed. I know it's dangerous, I know I need to take something, but man oh man I feel soooooo much better. I even started exercising.
Im considering LDN. I know neither Neuro will have anything to do with it so I will have to hunt it down, but I would just rather go the least toxic way I can, while I can. Researching this is how I found this forum. Very knowledgable people here, can't wait to get involved!
I apologize for being so long winded! Glad to have found you!
Im Kasey from California. I was diagnosed with Transverse Myelitis in Sept. Of 2014, RRMS two weeks later. Went in the hospital barely walking. Came home on a walker, graduated to a cane, now on my own. Some days I pinball on the walls of my house, but what can you do
Actually, I have two Neuros, one is adamant it's RRMS, the other says "Clinically Isolated syndrome." Both outcomes the same though, they both want me on a DMD. MS Neuro says forever, CIS doc says 5 years. I would rather believe the latter of course.
Its definitely been a trip. The TM began slowly, both feet numb. Over the course of about 10 days, it moved up above my waist. Had to go to one urgent care and 3 different ERs to get the correct diagnosis. (First hospital actually sent me home calling it a bladder infection?)
3rd hospital caught it. I had an MRI there of brain, thoracic and lumbar. The TM was at T8. No lesions in my brain. Lumbar puncture was positive for oligiclonal bands, hence MS dx. I was in the hospital for a week on high dose steroids.
I had another MRI a few months later showing a lesion on my cervical spine. Thing is, I was a chicken and opted for an open Mrai (deathly afraid of the tube)... The films were horrible and I got yelled at by the second Neuro. The radiologist that read the films didn't even compare to the old. Said negative for TM, but the lesion on the C-spine resembled an "astrocytoma."
It took over a week and several calls to my Neuro to see the report. (I made the mistake of looking at it myself first.) Lets just say there was a week there of a lot of crying, no sleep, lots of Xanax... Neuro said he is 99.999% sure that it's just an old MS lesion and proceeded to teach me a lesson about open MRIs. (I have had l'hermittes for at least 10 years... Never knew what that was.)
Anyway, I decided on Tecfidera. I couldn't get past the full dosing. Made me real sick. Stayed on one 240 a day for a few months but just didn't feel well ever. I got heart palps, massive fatigue, pain... And in turn a visit to cardio, other Drs etc. ended up with a pill for EVERYTHING.
So... I just got fed up. I stopped pretty much every med. For the last week, I sit here on pretty much nothing other than Vit D, magnesium, and a rare small dose of Tramadol of absolutely needed. I know it's dangerous, I know I need to take something, but man oh man I feel soooooo much better. I even started exercising.
Im considering LDN. I know neither Neuro will have anything to do with it so I will have to hunt it down, but I would just rather go the least toxic way I can, while I can. Researching this is how I found this forum. Very knowledgable people here, can't wait to get involved!
I apologize for being so long winded! Glad to have found you!
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