As most of you know I have only had one attack two years ago that severly affected my vision. I suffered a visual field defect and had 10 lesions show up on MRI. Having repeat brain MRI's done every six months since 2006 has shown no change, no enhancement, and no new lesions. My C-spine showed no lesions and my LP was negative with no O banding. The VEP was possitive!
All of the symptoms that I have been dealing with for since the attack are residual symptoms from it. They all came together and have all improved together like one big package. My neuro has been saying I had ADEM for two years, but watching me for MS.
About six months ago I started to have some transient numbness/tingling in the backs of my caves and the sides of my forearms that only lasted from 1-5 min and then would be gone. It seemed to be agravated by hot baths or getting too hot or simply stress!
I asked my neuro, and he said that it was residual nerve damage from the origional lesions. He also said that any demyelinating disease(MS or ADEM) that destroys the myelin could cause these symptoms when the body temp get elevated or from stress. Since they only last for mins and no new lesions or attacks have been seen, then I thought he might be right!
But this week, about three different times I have had this strange burning run down the top of my left foot. Feels like hot water running down my foot. All the times that it has happened, I was either hot or stressed. Is this the same type of thing as the transient numbness/tingling? I know these things are in MS, but they are also in ADEM too, according to my neuro!
I go see the new neuro that is suposed to specialize in MS on July 29th, and I am definately going to ask about this,but I was wondering what all of you think? I am due a new MRI of the brain, and I am going to ask that the entire spine be checked as well, especially now that I am having things in my extremities!
The weird thing is it seems that at the start when I had the attack in 2006, all symptoms were in my head/face/eyes only. Then about three months later I got the stiff neck that lasted for a couple of months. Then about six months ago the transient numbness/tingling in sides of arms and backs of caves. And now this burning in my foot. It almost seems as though it has ran from the top of my head to my feet in that order.
The only illness that I have read that has this kind of order is the Miller Fisher Syndrome. I ask my neuro about this a long time ago and he said that usually you would have respiratory destress, and I didn't! Over all I believe the possibilities that are on the table as far as a dx is ADEM, MS, Sjogren's or this Miller Fisher Syndrome. These are the only ones that I seem to match with. Any Ideas??
I don't know which other diseases cause the burning you feel, but definitely MS does. I get a lot of burning feelings. My neuro tried to attribute my burning feet and legs, especially the right, to diabetes (they ALWAYS think diabetes with this symptom), but I'm not diabetic and blood tests prove that.
I am not diabetic either and have had many test for it! This is just a wave of heat running from the top of my ankle area down the top of my left foot that only last a few min and has happened three times this week!
I have not been dx with MS, however have had many different episodes over the past 5 years. The reason I am posting is, I have had the same feeling of warm water running over the top of my ankles, and then down my foot. In fact the first time I felt it, I looked down to see if I actually had water running over my foot. It has happened many times, doesn't seem to matter whether or not I am standing or sitting. I have had brain MRI's that have all come back normal, except for a venous angioma, which I was told causes no symptoms. I am having a MRI of the C-spine in a couple of weeks. I have had weird symptoms ranging in cognitive problems, pins and needles in hands and feet, and many more. I did tell my neurologist my symptom about the warm rushing feeling over the foot, he didn't seem like he new what I was talking about.... I have many autoimmune disorders in my family, and am being watched closely. Let me know what you find out, and good luck to you!
I get a burning feeling in my shoulders, its very painful, I never could describe it until someone else with MS said they get this burning feeling almost like a sun burn would feel, thats what mine feels like, I used to tell my husband it was almost like someone rubbed a chemical on my neck and shoulders and its burning the skin off. I like the sunburn description better. I am a diabetic and its not related to my diabetes at all my Dr said its my MS. The other day I was doing a lot of stuff for a graduation party and my left leg was numb and my left foot had that same burning feeling it lasted about 2 hours and them went away. I am not sure if this is what your talking about but thats been my experience with the burning.
You know that I am speaking from what sounds reasonable to me when we talk about your symptoms and diagnosis. I can't speak with any authority. But, it appears to me that if there was this one-time episode of damage in the ADEM, then you wouldn't be getting new symptoms this late in the game. Obviously you have been overheated before and these symptoms did not appear. But, now they are.
I thought ADEM is supposed to stay static or gradually improve. That would mean no new symptoms and that the ones you have would be the same or improve. New symptoms ocurring when overheated now (but not before) are new symptoms.
Does this make sense? I want it to because I think it is important.
I have had the tingling before, and my neuro explained it as residual nerve damage. But I have definately never felt this warm sensation that I felt run down my foot three times this week. This does raise a red flag to me, and now I am wondering if this may be MS.
I found out from the Rheumy, who had a copy of one of my MRI's from a year ago and she said that it was not just the brain and brainstem, but also of the C-spine. The report read that there was no lesions in the brainstem or the entire C-spine. I had previously thought that the entire C-spine was not included, but I guess I was wrong.
It has been a little over six months since my last brain scan, and it is time for a new one, but since I am starting with this new neuro on July 29th, I will have to talk to him about all of this. But I am going to tell him of all of these new things when I see him.
Last night still another weird thing, I was having that buzzing in my ears again, that I haven't had in quite awhile, and noticed that it stoped when I quit touching my right leg. I was cutting my toenail on the right foot at the time.
When I noticed that the buzzing in the left ear stopped when I quit touching my right toes, then I started touching my right leg in different places to see if the buzzing in the left ear came back, and it did!
When I touched anywhere on my right leg or foot the buzzing in the left ear started again and quit when I stopped touching the right leg. That was weird. But like I said above, it seems that all of the symptoms have ran from the top of my head(my scalp) to now my feet, in that order.
Are you familar with the Miller Fisher Syndrome? It is a rare varient of the Guillian Barr Syndrome and the symptoms decend in the reverse order of GB syndrome. But would it take this long for the symptoms to move from the head to the feet? I don't know!!!
I can't wait to get to this new doctor, and I hope he is good!!! Meanwhile I am writing all of these new weird sensations down to take in with me!
I forgot to ask you what you think of the theory that my old neuro used to explain these things. Saying that any demyelinating disease that destroys Myelin could cause these heat/stress related sensations. Do you think this is possible that ADEM since it damages the Myelin, could cause residual symptoms just like MS?
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