Aa
To Quix..an MS question
Hi Quix- I hope you don't mind me asking you a question but you seem to be a good person to ask an opinion of.
Brief Hx:
40 year old female RN, no prior health issues. I am caucasion, 130 pounds and 5-6". I grew up in Florida and Arizona and am now in North Carolina.The only physical complaints in 2006 were fatigue and gerd. ( I worked the night shift..so to me not unreasonable.)
In January an acute onset of tingling (pins and needles) and paresthesias (hot burning, hot shocks) started in my left hand/arm and spread to my right hand/arm then to right leg and then left leg within days. Walking felt weird sensory wise, but I did not have trouble with any neuro tests. Symptoms also included tremor in arms/hands (this comes and goes)tingling of back of head and tongue, facial tremor (when stressed,its hard to keep a smile..it wiggles). Twitching on and off all over. A sense of vibration in the middle of my body. This is the worst feeling...like being plugged into a vibrating chair.Brain MRI and C and T spine MRI with Glad all negative..not a spot to be seen. Lumbar puncture clear with NO WBC, no elevated protien, no ogoclonial bands. The only thing showing on Neuro evaluation was hyperactive reflexes and he could see my tremor.Was given Decadron oral for 5 days (made symptoms worse) and then tried a B-12 shot (B-12 low normal of 301)which made me feel better for a couple of days. Neuro started me on Metanx (B-12 oral sup) and Lyrica for symptoms. He allowed me to give myself b-12 shots every two weeks. I began to see improvement in 4 weeks and since the shots (within this last month, more improvement. I HAVE NOT HAD ONE DAY WHERE THERE ARE NO SYMPTOMS. There are some syptoms that are gone and I haven't had "new" symptoms in 2 months. My strength is back ( I was out of work for 3 months..I felt like I had been attacked!)EMG normal Nerve Conduction normal. Neuro has no idea what it is/was...possible ideas are post viral myelitis (no evidence of this in lumbar puncture at all)possible b-12 deficiency (since I have shown improvement with supplementation) and possible early MS but nothing on MRI's or in lumbar puncture. All other serum labs negative. He wants to repeat MRI's in a couple of weeks (5 months after this began). I am still having symptoms, but not as many and not as bad. I can get through a whole week without crying...which is an improvement from how terrified I was in the beginning. Any thoughts? I have researched myself to death. I am hoping my improvement means I will continue to improve. I am sensing that nerve damage (irritation?) takes MONTHS to heal. Any imput would be greatly appreciated.
Thank you-Angela
Brief Hx:
40 year old female RN, no prior health issues. I am caucasion, 130 pounds and 5-6". I grew up in Florida and Arizona and am now in North Carolina.The only physical complaints in 2006 were fatigue and gerd. ( I worked the night shift..so to me not unreasonable.)
In January an acute onset of tingling (pins and needles) and paresthesias (hot burning, hot shocks) started in my left hand/arm and spread to my right hand/arm then to right leg and then left leg within days. Walking felt weird sensory wise, but I did not have trouble with any neuro tests. Symptoms also included tremor in arms/hands (this comes and goes)tingling of back of head and tongue, facial tremor (when stressed,its hard to keep a smile..it wiggles). Twitching on and off all over. A sense of vibration in the middle of my body. This is the worst feeling...like being plugged into a vibrating chair.Brain MRI and C and T spine MRI with Glad all negative..not a spot to be seen. Lumbar puncture clear with NO WBC, no elevated protien, no ogoclonial bands. The only thing showing on Neuro evaluation was hyperactive reflexes and he could see my tremor.Was given Decadron oral for 5 days (made symptoms worse) and then tried a B-12 shot (B-12 low normal of 301)which made me feel better for a couple of days. Neuro started me on Metanx (B-12 oral sup) and Lyrica for symptoms. He allowed me to give myself b-12 shots every two weeks. I began to see improvement in 4 weeks and since the shots (within this last month, more improvement. I HAVE NOT HAD ONE DAY WHERE THERE ARE NO SYMPTOMS. There are some syptoms that are gone and I haven't had "new" symptoms in 2 months. My strength is back ( I was out of work for 3 months..I felt like I had been attacked!)EMG normal Nerve Conduction normal. Neuro has no idea what it is/was...possible ideas are post viral myelitis (no evidence of this in lumbar puncture at all)possible b-12 deficiency (since I have shown improvement with supplementation) and possible early MS but nothing on MRI's or in lumbar puncture. All other serum labs negative. He wants to repeat MRI's in a couple of weeks (5 months after this began). I am still having symptoms, but not as many and not as bad. I can get through a whole week without crying...which is an improvement from how terrified I was in the beginning. Any thoughts? I have researched myself to death. I am hoping my improvement means I will continue to improve. I am sensing that nerve damage (irritation?) takes MONTHS to heal. Any imput would be greatly appreciated.
Thank you-Angela
Lyme has been diagnosed almost everywhere in the US. I was told it didn't happen in Nevada, but came across a classic acute case with the rash and the positive titres and everything. Quix
I have seen your posts. My god, 7 years! I thought 5 months was an eternity. I am living in North Carolina (not a big Lyme area) and lived most of my life in Florida and Arizona (supposedly not the MS area.) My husband and I did spend 2 weeks in Italy last summer and I had a horrible upper respiratory virus while on vacation...and I even researched Lyme likelyhood in that area but it doesnt seem to fit. I don't remember any kind of bite. You might try the Metanx again, I have read if it is B-12 related that things sometimes get worse before they get better. I don't know if it was B-12 related or "Post-Viral" (Neuro talk for "I don't know") but I wish it would sure as heck get better already. I think it is slow torture to have our nervous system not work right. I don't "believe" my sensory system at all anymore and it is quite amusing when I actually find a bug (or leaf or piece of thread) on my leg or arm, because I thought it was a "symptom". The Lyrica helps, but in order to stay awake and function I have to be on the smallest amount. I am keeping a diary to see progression, I think it is helpful. I think nerve healing looks something like the stock market...it goes up, up, down, up down etc. Not like watching a wound heal with progress every day.
I think you should get a second opinion if your neuro wont do a lumbar puncture. Sometimes that is the only clue. I changed neuros after the first one politely told me "nurses are a challenge to have as patients, they think they have every disease they have ever seen." I wanted to kill him. Here I was, the most terrified I had ever been for my health and well being and he was not believing me. My second neuro is great, and admits he doesn't know...but will keep trying to help me. That is the best kind of doc to have.
Angela
I think you should get a second opinion if your neuro wont do a lumbar puncture. Sometimes that is the only clue. I changed neuros after the first one politely told me "nurses are a challenge to have as patients, they think they have every disease they have ever seen." I wanted to kill him. Here I was, the most terrified I had ever been for my health and well being and he was not believing me. My second neuro is great, and admits he doesn't know...but will keep trying to help me. That is the best kind of doc to have.
Angela
Thank you so much for your reply. In all my researching somehow "CIS" never popped up and I did some research on it today which actually made me feel better. It seems that those who upon initial onset of symptoms who have a completely clean Brain and Spine MRI and clean lumbar puncture have a very small (like 3 to 11 percent) chance of it actually being MS. Since it came on so acute and seemed to "spread" like wildfire and given some of the other initial onset of symptoms (I had a wild "gastro" virus two days after initial onset), night sweats for 6 weeks, and 7 pound weight loss in the first 8 weeks, it really does seem to have a viral flavor. I have been a Med/Surgical nurse for 10 years and have seen some wild things, but never was introduced to such neurological things that I have read about since this occured. This forum is full of frightened people (like me) who know that something is dreadfully wrong with their bodies and are so frustrated when there does not seem to be an answer and a direct cause and effect like so much of other types of illnesses. I am learning that neurologists seem to say "i don't know" an awful lot. I would rather have them say that they don't know, then to diagnose me with something with no evidence.
I just read another of your posts today that you are in a flare and I am so sorry. ((hugs)) Hoping tomorrow is a better day for you. You are in my thoughts.
I see the neuro next week, will let you know what he says.
Again, thanks for the new direction of study.
Angela
I just read another of your posts today that you are in a flare and I am so sorry. ((hugs)) Hoping tomorrow is a better day for you. You are in my thoughts.
I see the neuro next week, will let you know what he says.
Again, thanks for the new direction of study.
Angela
WOW, what a story, I couldn't have wrote it any better myself. You may have read some of my posts on here, god only knows, there are enough of them.
My problems started 7 years ago, with this strange tickly feeling on my left cheek. I had gotten really sick, a weird of a sudden nausea that stayed with me for 3 months, docs all said anxiety. I was so sick that I didn't even want to move, I would sleep on the couch because just my husband turning in bed would make me want to puke.
After the nausea went away, and I lost 20 pounds, the weird buig crawling sensations started, first on my back, then my legs, then within a week they were everywhere. I am now into my 7th year.
In the past year I had tons of bloodwork, a brain MRI in April 06, c-spine in August 06, lumbar in Sept 06, and just recently another brain MRI this April, everything normal.
When I got sick back in 2000, the only thing that showed in my bloodwork was that I had a reactivated EBV infection, this was just tested in Jan this year again, it is now normal.
My neuro said No to a LP. She keeps telling me that its a post-viral thing, my goodness, its been 7 years.
I understand your frustration. I just recently started having the burning feelings, I thought a first I was coming down with shingles, because the burning was under my armpits, by morning they spread down my legs, and arms, and across my back.
I too was put on Metanx, this is when the burning started, so I discontinued taking it, because my B levels were never checked in the first place, I thought that maybe it could have been to much B vitamin.
Its been 3 months now, and the burning is starting to leave.
You are not alone, and I could not believe your post when I read it, it is so much like me.
Are you in the US? Have you been checked for Lyme? I am seriously looking into finding a LLMD and having my bloodwork sent to IGENEX for testing, because the standard ELISA is so inaccurate. I tested negative twice now with ELISA.
Keep in touch, our story is so familiar.
God bless, Jen
My problems started 7 years ago, with this strange tickly feeling on my left cheek. I had gotten really sick, a weird of a sudden nausea that stayed with me for 3 months, docs all said anxiety. I was so sick that I didn't even want to move, I would sleep on the couch because just my husband turning in bed would make me want to puke.
After the nausea went away, and I lost 20 pounds, the weird buig crawling sensations started, first on my back, then my legs, then within a week they were everywhere. I am now into my 7th year.
In the past year I had tons of bloodwork, a brain MRI in April 06, c-spine in August 06, lumbar in Sept 06, and just recently another brain MRI this April, everything normal.
When I got sick back in 2000, the only thing that showed in my bloodwork was that I had a reactivated EBV infection, this was just tested in Jan this year again, it is now normal.
My neuro said No to a LP. She keeps telling me that its a post-viral thing, my goodness, its been 7 years.
I understand your frustration. I just recently started having the burning feelings, I thought a first I was coming down with shingles, because the burning was under my armpits, by morning they spread down my legs, and arms, and across my back.
I too was put on Metanx, this is when the burning started, so I discontinued taking it, because my B levels were never checked in the first place, I thought that maybe it could have been to much B vitamin.
Its been 3 months now, and the burning is starting to leave.
You are not alone, and I could not believe your post when I read it, it is so much like me.
Are you in the US? Have you been checked for Lyme? I am seriously looking into finding a LLMD and having my bloodwork sent to IGENEX for testing, because the standard ELISA is so inaccurate. I tested negative twice now with ELISA.
Keep in touch, our story is so familiar.
God bless, Jen
Lyme is not a bad idea here. I have to say I don't think of it often enough and it is often a horribly difficult illness to diagnose. It can mimic almost all other neurologic diseases. Remember they always called syphyilis "the Great Imitator" The same is true of Lyme - and they are related - both are spirochetes. Quix
Wow! I can't really put it together any better than you already have. What a terrifying ordeal. My first thought also was some post-viral entity, but it doesn't really fit TM which wouldn't give you facial problems (tremoring facial muscles). Maybe a viral encephalitis, but then you would still expect to see something on LP.
Without ANY corroborating lab evidence they cannot make even a presumptive diagnosis of MS. So repeating the MRI later makes a lot of sense. If there were just one spot somewhere on the MRI they could begin disease-altering therapy based on the impression of a "Clinically Isolated Syndrome." I'm glad you've seen improvement. I think your neuro is on the right track by planning interval follow up.
http://patients.uptodate.com/topic.asp?file=demyelin/5656
http://www.neurologyreviews.com/sep05/MRIandMS.html
These links just discuss the CIS, with which you might already be familiar.
Good luck, Quix
Keep us posted,
Without ANY corroborating lab evidence they cannot make even a presumptive diagnosis of MS. So repeating the MRI later makes a lot of sense. If there were just one spot somewhere on the MRI they could begin disease-altering therapy based on the impression of a "Clinically Isolated Syndrome." I'm glad you've seen improvement. I think your neuro is on the right track by planning interval follow up.
http://patients.uptodate.com/topic.asp?file=demyelin/5656
http://www.neurologyreviews.com/sep05/MRIandMS.html
These links just discuss the CIS, with which you might already be familiar.
Good luck, Quix
Keep us posted,
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