erogan
04-11-2005, 09:17 AM
Greetings everyone,
I will post a more appropriate intro when I feel better. But, just a quick intro. I am 59 year old single female, who has had symptoms for 5 months. I have a 7 year old adopted daughter. So, I am in a bad place. But, of course hoping for the best.
MRI/lp are negative; but, have many indicators and doctors have searched elsewhere for cause. Optic neuritis, dizzinesss, delayed evoked potential, nystagmus, celebellum dysfunction.
I was treated on Friday with 500mg Slumedrol IV X 2. I have since developed for the first time tingling in fingers and tremor in right arm and hand. I fell on Saturday.
Few questions. Is nystagmus an ominous late sign? Or no coorelation? I read that in one spot. And, what about developing symptoms so quickly after the solumedrol? Is there a corelattion between response to first dose of solumedrol and my short or long term course? Is it possible that within 2 weeks some or all could subside despite developing these symptoms so soon after the solumedrol?
Sorry for the short disjointed, stressed post. But, any insight will be greatly appreciated. I know that this is a mystery disease. Just wondering others experiences.
Best wishes,
Emilie
I will post a more appropriate intro when I feel better. But, just a quick intro. I am 59 year old single female, who has had symptoms for 5 months. I have a 7 year old adopted daughter. So, I am in a bad place. But, of course hoping for the best.
MRI/lp are negative; but, have many indicators and doctors have searched elsewhere for cause. Optic neuritis, dizzinesss, delayed evoked potential, nystagmus, celebellum dysfunction.
I was treated on Friday with 500mg Slumedrol IV X 2. I have since developed for the first time tingling in fingers and tremor in right arm and hand. I fell on Saturday.
Few questions. Is nystagmus an ominous late sign? Or no coorelation? I read that in one spot. And, what about developing symptoms so quickly after the solumedrol? Is there a corelattion between response to first dose of solumedrol and my short or long term course? Is it possible that within 2 weeks some or all could subside despite developing these symptoms so soon after the solumedrol?
Sorry for the short disjointed, stressed post. But, any insight will be greatly appreciated. I know that this is a mystery disease. Just wondering others experiences.
Best wishes,
Emilie
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LaDeeDa
04-11-2005, 05:35 PM
Hi Emilie,
Sounds like you've got your hands full. Sorry you're having possible symptoms. The worst thing is having so many questions and finding no immediate answers.
Nystagmus can happen at any time (at least mine does) and doesn't necessarily mean an "ominous late sign". There are different symptoms that affect so many people so many different ways and to varying degrees that it is extremely difficult to know exactly how to give someone a definitive explanation. That's why it can take so long to get an MS diagnosis.
I'm sorry this doesn't answer your questions. That's what's so frustrating about MS; when you want answers you'll find that some people will have experienced what you did and others won't have had anything like what you're describing. Keep a log of your symptoms, what your activity is when sx occurs, how long sx lasts, how much it incapacitates you, yourpain level, etc. That information will help your doctors get a clearer picture, and possibly answers for you.
Good luck, keep us updated
Dee
Sounds like you've got your hands full. Sorry you're having possible symptoms. The worst thing is having so many questions and finding no immediate answers.
Nystagmus can happen at any time (at least mine does) and doesn't necessarily mean an "ominous late sign". There are different symptoms that affect so many people so many different ways and to varying degrees that it is extremely difficult to know exactly how to give someone a definitive explanation. That's why it can take so long to get an MS diagnosis.
I'm sorry this doesn't answer your questions. That's what's so frustrating about MS; when you want answers you'll find that some people will have experienced what you did and others won't have had anything like what you're describing. Keep a log of your symptoms, what your activity is when sx occurs, how long sx lasts, how much it incapacitates you, yourpain level, etc. That information will help your doctors get a clearer picture, and possibly answers for you.
Good luck, keep us updated
Dee
erogan
04-12-2005, 01:35 AM
Thanks, Dee.
Emilie
Emilie
Jewel2
04-12-2005, 12:56 PM
Hi Emilie,
The pain journal suggestion by Dee is really important. Even using a calendar and marking symptoms on the day you had them can be helpful when you go to your doctor the next time.
There are a lot of people with MS symptoms, but clean MRIs and LPs. It's a tough place to be. Hang in there and hopefully the truth will emerge sometime soon.
Best wishes,
Julie
The pain journal suggestion by Dee is really important. Even using a calendar and marking symptoms on the day you had them can be helpful when you go to your doctor the next time.
There are a lot of people with MS symptoms, but clean MRIs and LPs. It's a tough place to be. Hang in there and hopefully the truth will emerge sometime soon.
Best wishes,
Julie