lauren
12-05-2000, 10:03 AM
When my vision in my right eye went totally haywire I went to the eye doctor. It was very scary because they seemed kind of freaked out. I was told I had NO diabetic retinopathy but papilopathy, which is inflammation of the optic nerve. He said if I had ms it would be optical neuritis but since I am diabetic I got the other dx for the exact same disease. Papilopathy is a rare diabetic complication.
Then last week I was talking to a friend about these weird feelings I have been having. Last year my legs and arms burned so bad I thought my clothes would catch on fire. It went away after a month but now has been back for about a month now. My doc has no explantion. For two months now I have had this horrible muscle spasm in my lower left back , not all the time but sometimes up to 5-6 times per day. It is not my kidney. Last month my right hip also ached so bad for a few weeks, x-rays showed nothing. My dox offered physical therapy. Also I have have extreme pain and weakness in my left hand for a few months, not carpal tunnel. The weakness scares me because some mornings I can't even button my clothes.
But the biggest thing I mentioned is the extreme burning in my arms and legs, mostly legs from the time I wake up until the time I go to sleep, no relief.
One more thing, I have have facial tics or spasms for 15 years, don't know if this has anything to do with anything at all.
So my question is: If over (80%) of people with optical neuritis develop ms-does this include diabetics as well (even with another dx of papilopathy, the exact same disease of optiacl neuritis) My symptoms sure are strange and I am scared.
thank you,
lauren
Then last week I was talking to a friend about these weird feelings I have been having. Last year my legs and arms burned so bad I thought my clothes would catch on fire. It went away after a month but now has been back for about a month now. My doc has no explantion. For two months now I have had this horrible muscle spasm in my lower left back , not all the time but sometimes up to 5-6 times per day. It is not my kidney. Last month my right hip also ached so bad for a few weeks, x-rays showed nothing. My dox offered physical therapy. Also I have have extreme pain and weakness in my left hand for a few months, not carpal tunnel. The weakness scares me because some mornings I can't even button my clothes.
But the biggest thing I mentioned is the extreme burning in my arms and legs, mostly legs from the time I wake up until the time I go to sleep, no relief.
One more thing, I have have facial tics or spasms for 15 years, don't know if this has anything to do with anything at all.
So my question is: If over (80%) of people with optical neuritis develop ms-does this include diabetics as well (even with another dx of papilopathy, the exact same disease of optiacl neuritis) My symptoms sure are strange and I am scared.
thank you,
lauren
Sponsor
Leaf
12-05-2000, 01:06 PM
Hey Lauren,
Yes, it's possible. You should just go and get it checked out. With the MRI test (which is expensive but worth it to find out if you have MS or not) they can tell right away. If your doctor can't arrange it (and he sounds like he might be kind of fixed on what he thinks is the problem, not really open to another idea) the National MS Society has lists of MS doctors who are used to handling this sort of request. Also there is a book I have found helpful called Multiple Sclerosis by Rosner and Ross. Good luck!
Leaf
Yes, it's possible. You should just go and get it checked out. With the MRI test (which is expensive but worth it to find out if you have MS or not) they can tell right away. If your doctor can't arrange it (and he sounds like he might be kind of fixed on what he thinks is the problem, not really open to another idea) the National MS Society has lists of MS doctors who are used to handling this sort of request. Also there is a book I have found helpful called Multiple Sclerosis by Rosner and Ross. Good luck!
Leaf
Kathryn
12-07-2000, 11:20 AM
Lauren, I also suggest you go to a specialist and get that MRI. It can rule out MS. I have had Optic Neuritis, but, No MS. However, I do have Lupus. It's awful how autoimmune diseases overlap sometimes. But, diabetes has no compassion when it comes to MS or Lupus.. it can overlap very definitely. Don't take chances on losing your vision. Get checked out ASAP. I lost my vision in my right eye because they didn't treat the optic neuritis more aggressively. I had to eventually see a NeuroOpthalmologist for IV steroid therapy to save the vision in my other eye. Thank goodness our creator chose to give us two eyes because I would be lost without my vision. Good luck!
lauren
12-07-2000, 11:59 AM
Just a note--
I do have an MRI scheduled for next tuesday. I have also been seeing the eye doctor for the op every 3 weeks. The inflammation has gone down quite a bit and they are very pleased. My vision is still quite blury now but at least I'm not seeing that big black blob I was seeing before.
It is my impression that with op the chances of recovering your sight are the same with or without steroid therapy. It would also affect my diabetes horribly if I had to do the steroids.
Also, something I did't mention before---A few months ago at an initial exam with a new doctor---she noted in my chart my difficulty in swallowing with minimal pressure on my thyroid. I hadn't noticed it before but at times it is difficult to swallow even when someone isn't pushing on my neck.
After I get my results back, I'll post and let you all know what they say.
thanks
I do have an MRI scheduled for next tuesday. I have also been seeing the eye doctor for the op every 3 weeks. The inflammation has gone down quite a bit and they are very pleased. My vision is still quite blury now but at least I'm not seeing that big black blob I was seeing before.
It is my impression that with op the chances of recovering your sight are the same with or without steroid therapy. It would also affect my diabetes horribly if I had to do the steroids.
Also, something I did't mention before---A few months ago at an initial exam with a new doctor---she noted in my chart my difficulty in swallowing with minimal pressure on my thyroid. I hadn't noticed it before but at times it is difficult to swallow even when someone isn't pushing on my neck.
After I get my results back, I'll post and let you all know what they say.
thanks
andreamc
01-16-2001, 12:42 AM
lauren:
I was wondering if you got your test results yet from your MRI? You mentioned about the swallowing problem - I haven't had that exclusively yet, but when I had problems with my speech it was like I was trying to use every muscle in my jaw, mouth and throat to talk and swallow my own saliva - which is a symptom of MS. I hope everything works out OK for you. I am 24 with MS, and if you have it too, I hope that you know it really isn't as bad as it seems. Once you find out what the problem is, start treating it, and cope with it, things kind of start going back to normal(not completely). One thing I worry about all of the time is depression. So, whatever happens, keep your spirits up. Don't let yourself get down.
I was wondering if you got your test results yet from your MRI? You mentioned about the swallowing problem - I haven't had that exclusively yet, but when I had problems with my speech it was like I was trying to use every muscle in my jaw, mouth and throat to talk and swallow my own saliva - which is a symptom of MS. I hope everything works out OK for you. I am 24 with MS, and if you have it too, I hope that you know it really isn't as bad as it seems. Once you find out what the problem is, start treating it, and cope with it, things kind of start going back to normal(not completely). One thing I worry about all of the time is depression. So, whatever happens, keep your spirits up. Don't let yourself get down.