slsmith1122
02-23-2009, 12:11 AM
I've had symptoms as you all have listed since 1999. MRI's always negative,
however; for the past 12 days, they have been the worst with no relief.
My face, arms (elbows down to hands) and Legs from rear end to toes, have this tingling feeling, almost like constant chill bumps over and over and over!!!!! even sometimes going down my back. Also, yesterday I had lots of muscle spasms, in different place other than extremities, such as tongue, stomach, and back, though all on the left side. My eye lids on left and place on my left had felt like a hot needle was stuck in it for a few seconds. weird.
today is the first day in 12 days that the leg spasicity has stopped.Also, i have a constant ringing in my ears! Does this sound like MS? my neuro appt is not for 2 more weeks. Please reply!:wave:
however; for the past 12 days, they have been the worst with no relief.
My face, arms (elbows down to hands) and Legs from rear end to toes, have this tingling feeling, almost like constant chill bumps over and over and over!!!!! even sometimes going down my back. Also, yesterday I had lots of muscle spasms, in different place other than extremities, such as tongue, stomach, and back, though all on the left side. My eye lids on left and place on my left had felt like a hot needle was stuck in it for a few seconds. weird.
today is the first day in 12 days that the leg spasicity has stopped.Also, i have a constant ringing in my ears! Does this sound like MS? my neuro appt is not for 2 more weeks. Please reply!:wave:
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MSJayhawk
02-23-2009, 12:23 AM
I can certainly empathize with your situation. The only time I had ear problems coincided with one of my 6 month neuro check-up's. My neuro told me that it was not MS. She was right; it was an inner ear infection. I have not had the ear problem since.
glamour girl
02-24-2009, 01:17 AM
Oh you poor thing. Surely you can get in too see a doctor to help you sooner. Even a GP maybe.
slsmith1122
03-12-2009, 12:25 AM
I saw neurologist today. he says he is looking for:
1) peripheral neuropathy
2)MS
so i have to have a nerve conduction test / eeg/ & mri of spine w/wo contrast. what will the nerve test tell him? he kept saying he didnt think it was ms due to the MRI of brain done 2 weeks ago(w/o contrast) being negative. has any of you had this nerve test?:wave:
1) peripheral neuropathy
2)MS
so i have to have a nerve conduction test / eeg/ & mri of spine w/wo contrast. what will the nerve test tell him? he kept saying he didnt think it was ms due to the MRI of brain done 2 weeks ago(w/o contrast) being negative. has any of you had this nerve test?:wave:
MSNik
03-12-2009, 01:05 AM
I think most of us have had the test..what you described does not sound like MS, nor is it classic Parasthesia....Parasthesia is more numbnes and tingling...the test he ordered is to find out if the nerves respond to stimulation. If they are damaged, and its MS related, they wont respond...
They did this test on me when My entire left hand and fingers died, 3 years ago...they assumed first that I was developing Carpal Tunnel - however Carpal tunnel would have showed differnt results...my tests showed that the nerves have been completely damaged...3 years later, I have no feeling in my hand, fingers or forearm; however I can use them. I just have to think hard about what Im doing...and stay away from hot coffee!
I think with the negative test results you have had, that you need to trust your doctor and not dwell on this so much....whether or not its MS or not, its not going to change your life, however, I do not think you are facing an MS dx anytime soon.
good luck, keep us posted.
They did this test on me when My entire left hand and fingers died, 3 years ago...they assumed first that I was developing Carpal Tunnel - however Carpal tunnel would have showed differnt results...my tests showed that the nerves have been completely damaged...3 years later, I have no feeling in my hand, fingers or forearm; however I can use them. I just have to think hard about what Im doing...and stay away from hot coffee!
I think with the negative test results you have had, that you need to trust your doctor and not dwell on this so much....whether or not its MS or not, its not going to change your life, however, I do not think you are facing an MS dx anytime soon.
good luck, keep us posted.
Chateau
03-12-2009, 09:42 AM
Yes, indeed, the parathesia is mentally challenging. Mine has been going on since 1/18/09...an overnight sensation, so to speak. First one side from waist down and then other side a month later the morning after lumbar puncture after being flat for 24 hrs. Didn't even realize it until I sat on toilet first thing in a.m. Weird thing, front of thigh and abdomen not affected on left side. If I could stand up 24/7 I'd be OK. The sitting on this "numb butt" seems like a minor gripe, but it's most disconcerting. My feet really feel electrified and tight, but my rear feels like I put on 20 lbs, in just one spot. Then when I stand, I get a tight, constricing feeling, right at top of thighs. Needless to say, bathroom duties have become rather unpleasant. If parathesia ever subsides, is it usually gradual or spontaneous like it occurred? I am holding out hope for either. I'd be grateful for just a little relief. And if I feel more intense symptoms like after exercising or having been on my feet quite a while, am I aggravating my condition.....my dr. says do whatever I can, it won't hurt me, so I am golfing and walking with some effort. Having a few problems with my toes dragging....I hear it more than feel it...a good reminder to concentrate on picking up up my feet, which I know makes my gait appear stiff.
One more thing, all my nerve tests except VEP were within normal range. Does that mean there is no nerve damage yet? Dr. never mentioned word "lesions" and I don't see him again until I get back home in a couple weeks and get started on Rebif (whenever my insurance gives "go ahead" or not. I can't help but wonder from where in my CNS this problem is originating. All in my head, huh? And if I have RRMS as dx'd, I have no clue as to when my first occurrence was....since this one is such a doozy. Guess I have to wait for next MRI for lesion to show?
I'm starting to think I should see MS Specialist just so I can hear that I'm not the only one with such complete and lasting parathesia. My dr. is one of 2 neuros at Neuro Institue in Chicago, but he is not a MS specialist like the ones at the university hospital clinics. My PCP and myself are not questioning the dx, just the followup treatment at a MS clinic would make me feel more "cared for"....does that make sense? My drs nurse said she's never seen an MS case like mine (but she's only been there a year) and dr. says "he sees lots of MS patients, but also treats Parkinsons's, migraines, tumors, etc. So I'm leaning toward specialist, which seems to be what everyone on this forum recommends.
Thanks to everyone for encouragement and this great place to vent and learn.
Linda
One more thing, all my nerve tests except VEP were within normal range. Does that mean there is no nerve damage yet? Dr. never mentioned word "lesions" and I don't see him again until I get back home in a couple weeks and get started on Rebif (whenever my insurance gives "go ahead" or not. I can't help but wonder from where in my CNS this problem is originating. All in my head, huh? And if I have RRMS as dx'd, I have no clue as to when my first occurrence was....since this one is such a doozy. Guess I have to wait for next MRI for lesion to show?
I'm starting to think I should see MS Specialist just so I can hear that I'm not the only one with such complete and lasting parathesia. My dr. is one of 2 neuros at Neuro Institue in Chicago, but he is not a MS specialist like the ones at the university hospital clinics. My PCP and myself are not questioning the dx, just the followup treatment at a MS clinic would make me feel more "cared for"....does that make sense? My drs nurse said she's never seen an MS case like mine (but she's only been there a year) and dr. says "he sees lots of MS patients, but also treats Parkinsons's, migraines, tumors, etc. So I'm leaning toward specialist, which seems to be what everyone on this forum recommends.
Thanks to everyone for encouragement and this great place to vent and learn.
Linda
slsmith1122
03-12-2009, 08:55 PM
that is great news! I sure hope MS is not the end result. thanks for your post, it made me feel better!
slsmith1122
03-12-2009, 09:03 PM
Linda,
I have the same exact sensations you do. But not dx'd yet. Sometimes it may go away, then pops up again for a few days. did your doc ever mention migraines to you? or just go straight to MS? the reason i ask, is the neuro i saw said i could have a rare type migraine (hemiparegic) sp. that could give weird symptoms, but no headache. I have never heard such.
I have the same exact sensations you do. But not dx'd yet. Sometimes it may go away, then pops up again for a few days. did your doc ever mention migraines to you? or just go straight to MS? the reason i ask, is the neuro i saw said i could have a rare type migraine (hemiparegic) sp. that could give weird symptoms, but no headache. I have never heard such.
Chateau
03-12-2009, 11:26 PM
Linda,
I have the same exact sensations you do. But not dx'd yet. Sometimes it may go away, then pops up again for a few days. did your doc ever mention migraines to you? or just go straight to MS? the reason i ask, is the neuro i saw said i could have a rare type migraine (hemiparegic) sp. that could give weird symptoms, but no headache. I have never heard such.
This hemiplegic migraine is a new one to one me. Looked it up and doesn't seem like what I have, but initially when my symptoms were unilateral a stroke was considered. My symptoms have never subsided, but I keep checking and hoping that I have a normal feeling, SOMEWHERE. I'm sorry you're having to put up with this and I hope you'll get something definitive soon. Have you had lumbar puncture yet? That was the defining moment for me. But I haven't seen neuro since his nurse gave me the news on the phone last week. I'm working on my list for when I do see him next month when I get home. My husband is anxious to get back north since he only likes being away for short periods and he gets spring (gardening fever) way too soon. I told him that when I go back, my life is really going to change until Rebif and I come to terms, so I want to stay in the sun and relax without the stresses of reality for as long as possible. It's not denial for me, just the reality of my life. I hope that one day when your symptoms do subside, they will just not return. Linda
I have the same exact sensations you do. But not dx'd yet. Sometimes it may go away, then pops up again for a few days. did your doc ever mention migraines to you? or just go straight to MS? the reason i ask, is the neuro i saw said i could have a rare type migraine (hemiparegic) sp. that could give weird symptoms, but no headache. I have never heard such.
This hemiplegic migraine is a new one to one me. Looked it up and doesn't seem like what I have, but initially when my symptoms were unilateral a stroke was considered. My symptoms have never subsided, but I keep checking and hoping that I have a normal feeling, SOMEWHERE. I'm sorry you're having to put up with this and I hope you'll get something definitive soon. Have you had lumbar puncture yet? That was the defining moment for me. But I haven't seen neuro since his nurse gave me the news on the phone last week. I'm working on my list for when I do see him next month when I get home. My husband is anxious to get back north since he only likes being away for short periods and he gets spring (gardening fever) way too soon. I told him that when I go back, my life is really going to change until Rebif and I come to terms, so I want to stay in the sun and relax without the stresses of reality for as long as possible. It's not denial for me, just the reality of my life. I hope that one day when your symptoms do subside, they will just not return. Linda
slsmith1122
03-13-2009, 11:42 PM
Linda,
No lumbar puncture yet. I also researched that hemiplegic migraine.... that is not me at all. Im afraid it will be the MS. He has that on his
"list" of possibilities as well. Lumbar puncture is probably not far away. I will keep u posted. Thx for listening. You know that no one close to people with these problems, do NOT want to talk about it, sort of denial.....my mom even sort of changes the subject when i bring this up. oh well, thx again!!!
No lumbar puncture yet. I also researched that hemiplegic migraine.... that is not me at all. Im afraid it will be the MS. He has that on his
"list" of possibilities as well. Lumbar puncture is probably not far away. I will keep u posted. Thx for listening. You know that no one close to people with these problems, do NOT want to talk about it, sort of denial.....my mom even sort of changes the subject when i bring this up. oh well, thx again!!!