Hi. My name is Robbin and I'm newly diagnosed. My odd issues started probably 15 years ago with numb spots on the tips of my big toes. I tested very low on B-12 so they tested and said pernicious anemia, B-12 shots. That worked well. I had a few other odd things since then that I now think are connected.
Then in March, 2010, I woke up one morning completely dead numb from the waist down. Everything worked, just absolutely zero sensation. After several docs and tests (1 spinal lesion, all rule-out blood tests normal, "slight" banding in lp, but something else that kind of cancelled that out? proteins elsewhere? I didn't take good notes.
), the MS neuro said TM/CIS. Could go on drugs, might never have another episode with or without. I decided to go conservative. It took probably about 6-8 months to get 95+% feeling back (a few numb/altered sensation spots remain).
Fast forward to this January, I had another episode (ok, now looking back it really started in December with a little bit more tingling in my legs that I thought was weather related - I have had tingling when exercising and going from cold->heat since at or even before the 2010 episode) But in January my left arm started tingling and from the crown of my head, down my ear to the front of my neck (nothing on my face was affected) and just like before, I could almost draw a line around the affected area. Much of my shoulder area was quite numb, the rest was altered sensation/tingling. This seemed a bit worse in some ways, I had a little loss of control of my arm in certain positions. But better in other ways, it resolved much faster, very little residual (some tingling remains in my left hand).
I went back to the neuro I was seeing since I moved to a new state in 2012 - she is not an MS neuro - and she said she thought it was probably MS and sent me to a specialist. We got some tests transferred from my old doc's office (he passed away in 2011
so no consult available, just records) to the new MS doc. He concurred with my current neuro - two episodes in time and space == MS - and has suggested I go on tec. I just got notice that my insurance has approved it. I'm waiting to start until after my step-son's wedding next weekend, just in case...
Not sure if it's significant or not, but both episodes were in periods of high stress (2010 - got laid off - happy to finally be out of a failing company, but stressful; 2014 - mom's final month after 2 years of decline). Both lesion locations are at points of previous injury and for which I've had years of chiropractic. I'm freaking out about visiting the chiro ever again as I'm afraid it will exacerbate symptoms now.
Now, the questions. I still don't have any brain lesions on my recent MRIs, just the three (this second relapse had two lesions near each other, but distinct) spinal lesions. Does anyone else on here just have spinal lesions? And are you willing to chat? I was reading some stuff this weekend that scared me a bit re: just spinal lesions...faster progression, more disability. Also found one that said that PPMS is more often spinal lesions and fewer lesions in the brain.
Part of me says (after reading all the negative experiences with tec, and yes, I've also read to take that with a grain of salt as the "pros" do not post as much as the "cons") do I really need to have a DMD since my symptoms have been so light and transitory. Should I get a second opinion? Dr. G seems very well-respected in the area, but the first thing I thought of when he just recommended tec, and then I got a followup call from the office about being in a study...is he using me as a lab rat? Getting kickback from the pharma? (no, I'm not a conspiracy theorist, but also not a big fan of the drug companies
) The other part of me reads what could happen, even with TM and I want to take ALL the DMDs 
Since MS is so varied in its course and presentation, how does one find a compatible peer-mentor?!? This is a scary road to walk (my friend who was just dx with breast cancer calls these our respective wildernesses) and it would be nice to have a friend or two along the way who has walked the same road.
Anyway, this is rather long so I'll quit rambling and look forward to connecting with others on this new walk. Thanks for listening.
Then in March, 2010, I woke up one morning completely dead numb from the waist down. Everything worked, just absolutely zero sensation. After several docs and tests (1 spinal lesion, all rule-out blood tests normal, "slight" banding in lp, but something else that kind of cancelled that out? proteins elsewhere? I didn't take good notes.
), the MS neuro said TM/CIS. Could go on drugs, might never have another episode with or without. I decided to go conservative. It took probably about 6-8 months to get 95+% feeling back (a few numb/altered sensation spots remain).Fast forward to this January, I had another episode (ok, now looking back it really started in December with a little bit more tingling in my legs that I thought was weather related - I have had tingling when exercising and going from cold->heat since at or even before the 2010 episode) But in January my left arm started tingling and from the crown of my head, down my ear to the front of my neck (nothing on my face was affected) and just like before, I could almost draw a line around the affected area. Much of my shoulder area was quite numb, the rest was altered sensation/tingling. This seemed a bit worse in some ways, I had a little loss of control of my arm in certain positions. But better in other ways, it resolved much faster, very little residual (some tingling remains in my left hand).
I went back to the neuro I was seeing since I moved to a new state in 2012 - she is not an MS neuro - and she said she thought it was probably MS and sent me to a specialist. We got some tests transferred from my old doc's office (he passed away in 2011
so no consult available, just records) to the new MS doc. He concurred with my current neuro - two episodes in time and space == MS - and has suggested I go on tec. I just got notice that my insurance has approved it. I'm waiting to start until after my step-son's wedding next weekend, just in case...Not sure if it's significant or not, but both episodes were in periods of high stress (2010 - got laid off - happy to finally be out of a failing company, but stressful; 2014 - mom's final month after 2 years of decline). Both lesion locations are at points of previous injury and for which I've had years of chiropractic. I'm freaking out about visiting the chiro ever again as I'm afraid it will exacerbate symptoms now.
Now, the questions. I still don't have any brain lesions on my recent MRIs, just the three (this second relapse had two lesions near each other, but distinct) spinal lesions. Does anyone else on here just have spinal lesions? And are you willing to chat? I was reading some stuff this weekend that scared me a bit re: just spinal lesions...faster progression, more disability. Also found one that said that PPMS is more often spinal lesions and fewer lesions in the brain.
Part of me says (after reading all the negative experiences with tec, and yes, I've also read to take that with a grain of salt as the "pros" do not post as much as the "cons") do I really need to have a DMD since my symptoms have been so light and transitory. Should I get a second opinion? Dr. G seems very well-respected in the area, but the first thing I thought of when he just recommended tec, and then I got a followup call from the office about being in a study...is he using me as a lab rat? Getting kickback from the pharma? (no, I'm not a conspiracy theorist, but also not a big fan of the drug companies
) The other part of me reads what could happen, even with TM and I want to take ALL the DMDs Since MS is so varied in its course and presentation, how does one find a compatible peer-mentor?!? This is a scary road to walk (my friend who was just dx with breast cancer calls these our respective wildernesses) and it would be nice to have a friend or two along the way who has walked the same road.
Anyway, this is rather long so I'll quit rambling and look forward to connecting with others on this new walk. Thanks for listening.
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