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Old 01-27-2016, 12:02 PM #201
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My Neuro at Johns Hopkins is back!!!!!! Haven't seen him in almost 2 years, went to his replacement, called to make my annual appointment. She's gone, he's back seeing him in May. In a plateau, it's almost 2 years and nothing to say! This is good.
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Old 01-27-2016, 12:06 PM #202
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In and out appointment but sure like keeping a connection. Thinking of a new wheelchair so may need a doctor around when I tell health insurance company.
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Old 02-15-2016, 02:16 PM #203
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I am new to this blog. I am one of those rare people that only have lesions in spine and have doubled in 9 months. My physician is surprised I am walking. I am increasingly numb in BLE but the only thing that helps my relapse is plasma exchange. I go through OMRF in case there is a trial for a drug that could help, but they do not have privleges anywhere to do this treatment. anyone else have only spinal lesions ?
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Old 02-16-2016, 02:13 PM #204
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I think most of my lesions are spinal. I have so many lesions in both my spine and brain that protocol is to stop counting after 15. I received a similar comment from my neurologist sometime after year five of dx in that he was surprised I was not in a wheelchair full time.
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Old 02-16-2016, 05:36 PM #205
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Quote:
Originally Posted by huntti View Post
I am new to this blog. I am one of those rare people that only have lesions in spine and have doubled in 9 months. My physician is surprised I am walking. I am increasingly numb in BLE but the only thing that helps my relapse is plasma exchange. I go through OMRF in case there is a trial for a drug that could help, but they do not have privleges anywhere to do this treatment. anyone else have only spinal lesions ?
What is BLE? - all I could find was Brotherhood of Locomotion Engineers and I !doubt that's it. Turn's out you can't Google everything.
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Old 03-03-2016, 09:12 AM #206
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http://acceleratedcure.org/sites/def...3.1.16.pdf.pdf

Sounds promising for PPMS.

Dozen' t mention SPMS...darn it!
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Old 03-09-2016, 10:32 AM #207
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Sally, do you know what you did? A little ray of light shone in my MS life. I see my neurologist in May, we will discuss Ozcrelizumab ( I know I misspelled)

A little hope. I know what is is done already done but maybe this will help in not progressing furture. I just need something to halt this $%^ age progression thing!!!
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Old 03-10-2016, 11:21 AM #208
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I'm so glad I posted this for yo kicker.
I hope it works for you. If it does, I will try it too!
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Old 03-10-2016, 04:28 PM #209
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Side effects don't sound horrible and I think no deaths are attributed to it. The one death that occurred, when I read about it they didn't state what caused it, but did not think it was the drug.
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Old 06-07-2016, 04:29 PM #210
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Think I hit a plateau. Doctor nods head but won't say out loud. Who knows? Carpe diem.
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