Aa
does this sound like ms?
This question is for anyone. My name is Mike I am 51 yrs old. About 5 yrs ago I lost my balance and fell off a ladder working on my home. I suffered a slight concussion, no broken bones or anything, recovered fairly quickly. About 6 mos. later I had a severe attack of vertigo. No headache, so dizzy that just moving my body lightly caused me to vomit. Lasted about 4 days, went away completely. Aprox. 6 mos. later same thing happened again, just as severe. Went to the doctor, thought it was sinus infect. or something. Got med. , It went away. About 3-4 mos. later it came back just as bad. The worst part lasted about 4 days and I was lightheaded with nausea for another couple weeks. In the mean time I started getting a cracking or popping sound in my left ear. I should say each time it was my left ear affected, and along with the vertigo I had nystagmus and severe dull eye socket pain. My wife encouraged me to go back to the doctor, so I did. He thought perhaps I had damaged something in the fall that hadn't healed, so they did an MRI, everything was ok. He thought perhaps particles in my ear floating around. I awas then 48 yrs. old. 3 mos. later I have another attack lots dizziness, votimitting, lightheadedness,nystagmus, for several weeks. Also loss of balance. Shortly after this attack I got shingles. I kept having these attacks every 2-3 mos, for the next year. I did not tell my wife, I would just get up early make my way to a chair and sit until the dizziness would subside enough that I could go to work.. I am a rural carrier for the post office. Driving dizzy is not good. I should say that many weeks I would sleep sitting up and I would be llightheaded , with nausea for several weeks. Finally 2 yrs ago beginning in Jan. I got an attack that just wouldn't go away, I slept sitting up for 3 mos.. My ear was popping or cracking almost continually. I finally told my wife,went to my doctor and then to Mayo clinic. They determined that I had suffered some permanent loss of balance, had double vision, definetly had something wrong with my left ear. They did not know what. They suggested it was all in my ear and that perhaps if it continued I might want to cut the nerve to my left ear. I mentioned also that many times I had had numbness in my left arm and hand, I saw a neurologist who didn't think I had anything more than an ear problem. He suggested my double vision was probably because I damaged a cranial nerve falling off the ladder. They sent me home on a no salt, no caffiene diet, and said that's all we can do. In the meantime the attacks continued but instead of staying bed I just carried around a buckett. I have kept a journal of sypmptoms for several years now. The doctors I've seen never want to look at it. This past summer I had some electical testing on my nerves, left side of my body. It was done by a neurologist who works with head injuries. He told me that the nerves and muscles in my leg and arm worked fine , the problem had to be in my spine or brain. He also looked over my file and MRI's and said about four tomes that he thought it looked like ms to him. he also told me that based on his expertise and experience, what was happening was not the result of hitting my head. I went back to my doctor, he ordered 2 more MRI's ,none were with contrast and also more blood work and a spinal tap. one lubo showed up on the MRI, I had elevated levels of anti-bodies in my spinal fluid but not my blood. The local neurologist dismissed both of those. Now all of the same things that happened to my left ear are now happening to my right ear. In just the past six mos. I have had at least three nights when I could not sleep because as soon as I would relax my arms or legs would jerk hard and painful and wake me up. I now have twitching in both legs and this past summer which was unusually hot where I live , I hurt continually and my legs were like rubber. Sometimes I had to actually force my legs to move. Just a few weeks ago I had when I had no dizziness or lightheadedness, I lost my balance and fell over , several times. I took all of this to my neuro, he told me I had about five different things going on at once. Also I just went to my eye doctor because I was having trouble wiyh my eyes. I hadn't seen him for almost 2 yrs. I mentioned to him the double vision and he said that he was actually monitoring that for about 8 yrs. long before I fell off the ladder. He said it was nothing before, but since I had seen him last it had gotten considerably more severe. The final symptom that has happened lately was that I had fallen asleep on the couch, only to be awakened because my left leg spasmed and kicked the coffee table. IMy legs had been on the verge of cramping continually for several months. They told me that was probably spinal stenosis, which has never shown up on any mri. One more thing. The last time while I was having a severe attack of vertigo, we did a cat scan of my left ear, everything was fine, no excess fluid no anything. I know this is long, I thank you all for hearing me out. I am a triple A type personnality, have a group that sings and visits nursing home and I lead a local christian bulilding ministry, and this stuff is getting in my way. I have been reading this forum for awhile. God Bless You All!!! Thanks!!
It DOES NOT MATTER how many lesions you have on MRI. You can have one small one or one large one or you can have a dozen. It doesn't matter. BUT, normally if you have lesions in the brain or spinal cord, you will find oligloconal bands in the spinal fluid when you have your LP, if you have MS. Normally!
Hope, your doctor is SO wrong. Keep fighting for what YOU believe is true. Do you have clear relapses and clear remissions? Have you had an attack that lasted more than 24 hours? Did the attack occur after any infection, an injury, stress?
These should be the questions that your doctor is asking you. Just so you know, I have 7 lesions in the brain and one in the spinal cord and have been diagnosed with MS for 12 years. We have members on the forum with multiple lesions and they still do not have a diagnosis, so you are not alone.
Bumble...I am glad you told that doctor off. I wouldnt have paid the jerk either...In fact, I would have billed "him" for "my" time. He wasted it...
Heather
Hope, your doctor is SO wrong. Keep fighting for what YOU believe is true. Do you have clear relapses and clear remissions? Have you had an attack that lasted more than 24 hours? Did the attack occur after any infection, an injury, stress?
These should be the questions that your doctor is asking you. Just so you know, I have 7 lesions in the brain and one in the spinal cord and have been diagnosed with MS for 12 years. We have members on the forum with multiple lesions and they still do not have a diagnosis, so you are not alone.
Bumble...I am glad you told that doctor off. I wouldnt have paid the jerk either...In fact, I would have billed "him" for "my" time. He wasted it...
Heather
That Dr. just sucks! Okay, I have a similar scenario. Burning feet, twitches, feel like I am going to pee myself but don't, migraines, rubbery legs in hot weather, etc. One lesion on MRI - B12, thyroid tests norm., visual evoked potentials norm, ABR normal, spinal tap, norm. BUT, I feel like ****. It is not in my head. The pain and weakness is real....and my doctor said you have to have MULTIPLE lesions to have MS. I had one - we'll see if this last MRI says anything.
Good luck and take care:)
Good luck and take care:)
Thanks for your comments;
When I went to Mayos I saw an ENT doctor and they did determine that it was not Meniere's, but they did not know what it was either. They said I had a lot of similiar symptoms. The double vision started several years before the fall, I found that out just recently. Also the neuro. I saw who dealt with head injuries said it could not be from that because it was getting worse not better and he could find no damage to my head that would suggest an injury that hadn't healed some 5 yrs later. The day that I fell it was very hot. I used to be a runner even did one marathon, I had noticed the last few years that I ran that there were times my legs felt like rubber and I had a hard time running. I passed it off as not enough energy food or something like that.
The problem is more and more things have been happening that they have tried to explain away as totally seperate injuries. The numbness in my left arm and hand they suggested was a bone spur in my neck pinching a nerve. The cramping hamstrings, muscle spasms and leg twitches they say are spinal stenosis, even though can find no injury to my back.. I forgot to mention that I've had urge-incontinence several times lasting several weeks. They suggested that was a different back injury causing that. We have explored every thing there is from B12 to lymes disease, blood sugar, you name it. They ruled them all out. I asked that since they had ruled all these other things out why couldn't it be ms or something like that.
The one thing in this that they can't understand is, why am I not getting better. I have a friend who I found out just recently had almost identical symptoms, they told him pretty much the same things they did me. He was just recently diagnosed wjth ms.
The last neuro I saw said he read my file but he didn't. He said he read my MRI's and 2 min. later his nurse came in and asked me where I had them done because she couldn't find them. He never read them at all. I never mentioned anything to him about ms when I went there I just wanted a fresh look,. He launched into a big deal about why it wasn't ms, I said I hadn't not even mentioned it, but since he had, why couldn't it be since they've ruled lot's of other things. When I finally pinned him done he said he would not diagnose ms no matter how many symptoms I had that matched because numerous lesions did not show up on my MRI. He hadn't even hardly looked at my file and did not want to see my journal. He said " let's just say I won't charge you for this visit". I said " I wouldn't pay you anyway you din't do anything. That was the last time I went to the doctor. Anyway thanks for your responses, and for listening. God Bless Eh!!
When I went to Mayos I saw an ENT doctor and they did determine that it was not Meniere's, but they did not know what it was either. They said I had a lot of similiar symptoms. The double vision started several years before the fall, I found that out just recently. Also the neuro. I saw who dealt with head injuries said it could not be from that because it was getting worse not better and he could find no damage to my head that would suggest an injury that hadn't healed some 5 yrs later. The day that I fell it was very hot. I used to be a runner even did one marathon, I had noticed the last few years that I ran that there were times my legs felt like rubber and I had a hard time running. I passed it off as not enough energy food or something like that.
The problem is more and more things have been happening that they have tried to explain away as totally seperate injuries. The numbness in my left arm and hand they suggested was a bone spur in my neck pinching a nerve. The cramping hamstrings, muscle spasms and leg twitches they say are spinal stenosis, even though can find no injury to my back.. I forgot to mention that I've had urge-incontinence several times lasting several weeks. They suggested that was a different back injury causing that. We have explored every thing there is from B12 to lymes disease, blood sugar, you name it. They ruled them all out. I asked that since they had ruled all these other things out why couldn't it be ms or something like that.
The one thing in this that they can't understand is, why am I not getting better. I have a friend who I found out just recently had almost identical symptoms, they told him pretty much the same things they did me. He was just recently diagnosed wjth ms.
The last neuro I saw said he read my file but he didn't. He said he read my MRI's and 2 min. later his nurse came in and asked me where I had them done because she couldn't find them. He never read them at all. I never mentioned anything to him about ms when I went there I just wanted a fresh look,. He launched into a big deal about why it wasn't ms, I said I hadn't not even mentioned it, but since he had, why couldn't it be since they've ruled lot's of other things. When I finally pinned him done he said he would not diagnose ms no matter how many symptoms I had that matched because numerous lesions did not show up on my MRI. He hadn't even hardly looked at my file and did not want to see my journal. He said " let's just say I won't charge you for this visit". I said " I wouldn't pay you anyway you din't do anything. That was the last time I went to the doctor. Anyway thanks for your responses, and for listening. God Bless Eh!!
I am not a doctor, but know a bit about vertigo. Your case does sound complicated, but I don't think that vertigo, true vertigo - spinning, is the first thing that shows up with MS. Dizziness/imabalance maybe, but true vertigo, where the world is spinning around you or you are spinning is usually peripheral - or in the ear or vestibular nerve. Have you had an ENG - electronysagmography test? If not, you should. It tests the CNS and the PNS to see which one it is. It doesn't always give an answer, but it sounds an aweful lot like peripheral vestibular issues to me. Ear popping, all of that. Also, if they think it is Meniere's - you need an ECOG - electrocochleography test - which is the best thing out there to detect Meniere's. I know how miserable vertigo can make your life - and it is THE most difficult thing to diagnose, a real pain! BUT, I would go to a dizziness/balance clinic. There are ENTs that specialize in this, although others will see you, go to one who specializes. You can waste your time otherwise. By the way - if it is vertigo caused by vestibular problems - those Physical therapists should have started vestibular rehabilitation - THEY ARE SUPPOSED TO BE TRAINED FOR THAT! Anyway, I'll get off my soap box and hope you fell better:)
Take care, feel free to be my friend on MY MEDHELP.
Take care, feel free to be my friend on MY MEDHELP.
Hi there Mike,
Sorry to hear that you have been having such a hard time. My gosh, you certainly have been through alot.
I have to hazard a guess here...please note that I am NOT a doctor, so this is a guess. I think that all of your problems stem from your fall. I do not think you have MS. But that's a guess.
We have a retired doctor that contributes to our forum that has enough of her own experiences with vertigo, dizziness, etc., to be able to give you a more educated guess.
Her name is Quix (forum name) and hopefully she will get a chance to look at your comments. You can help us out, by typing your comments in paragraphs. It's very hard for so many of us to read comments that are in all one paragraph. Our eyes cannot follow the text.
I have been diagnosed with MS for over a decade. I certainly understand how terrible you are feeling and not having any answers. Hopefully there will be someone on the forum that can give you some insight.
Welcome.
Heather
Sorry to hear that you have been having such a hard time. My gosh, you certainly have been through alot.
I have to hazard a guess here...please note that I am NOT a doctor, so this is a guess. I think that all of your problems stem from your fall. I do not think you have MS. But that's a guess.
We have a retired doctor that contributes to our forum that has enough of her own experiences with vertigo, dizziness, etc., to be able to give you a more educated guess.
Her name is Quix (forum name) and hopefully she will get a chance to look at your comments. You can help us out, by typing your comments in paragraphs. It's very hard for so many of us to read comments that are in all one paragraph. Our eyes cannot follow the text.
I have been diagnosed with MS for over a decade. I certainly understand how terrible you are feeling and not having any answers. Hopefully there will be someone on the forum that can give you some insight.
Welcome.
Heather
Welcome Mike!
Sorry to hear you are having problems and no diagnosis. I'm undiagnosed, but hopefully that will change soon.
My symptoms started with vertigo back in 2001. I woke up with the room spinning and my eyes rhythmically darting left. I was *so* sick...couldn't walk and no position made it go away.
Dear husband brought me to the ER, and the doctor said it must be an ear infection. She didn't examine me or offer any medication. My attack lasted 2-3 months.
I was blew off by even more doctors. Crazy! I was also having problems walking and falling from weakness, in addition to eye pain and other symptoms. The darn spinning never goes away for up to three months, like this summer.
Found an ENT that listened to me late 2002. He had me loose weight, stop eating salt, no caffeine, and ordered allergy shots. He tested my hearing which fluctuates, and ordered a Brainstem Evoked Potential test with blood work. At first he thought it may be Benign Positional Vertigo (BPV), and then Meniere's Disease. He requested my family doctor to order a MRI to rule other things out, but she didn't. My testing didn't indicate Meniere's, and the ENT offered to cut a nerve (Yikes!!) but I declined.
Last spring, I was in Physical Therapy for a rotator cuff injury. One day I showed up with severe vertigo. They canceled my remaining appointments- I think they were afraid to touch me. Ouch.
I now see a MS Specialist, and hope to hear some test results soon. He and my primary doctor believe my problems are somewhere in the spine. I have pins and needles, burning, weakness and falling, gait issues, migraines, eye pain, etc.
I've never been offered any kind of treatment (other than the cutting of a nerve) for my symptoms. Just sent home to suffer and wonder if it was all in my head. Sometimes I feel like a psychological guinea pig. :(
God Bless,
Bethany
Sorry to hear you are having problems and no diagnosis. I'm undiagnosed, but hopefully that will change soon.
My symptoms started with vertigo back in 2001. I woke up with the room spinning and my eyes rhythmically darting left. I was *so* sick...couldn't walk and no position made it go away.
Dear husband brought me to the ER, and the doctor said it must be an ear infection. She didn't examine me or offer any medication. My attack lasted 2-3 months.
I was blew off by even more doctors. Crazy! I was also having problems walking and falling from weakness, in addition to eye pain and other symptoms. The darn spinning never goes away for up to three months, like this summer.
Found an ENT that listened to me late 2002. He had me loose weight, stop eating salt, no caffeine, and ordered allergy shots. He tested my hearing which fluctuates, and ordered a Brainstem Evoked Potential test with blood work. At first he thought it may be Benign Positional Vertigo (BPV), and then Meniere's Disease. He requested my family doctor to order a MRI to rule other things out, but she didn't. My testing didn't indicate Meniere's, and the ENT offered to cut a nerve (Yikes!!) but I declined.
Last spring, I was in Physical Therapy for a rotator cuff injury. One day I showed up with severe vertigo. They canceled my remaining appointments- I think they were afraid to touch me. Ouch.
I now see a MS Specialist, and hope to hear some test results soon. He and my primary doctor believe my problems are somewhere in the spine. I have pins and needles, burning, weakness and falling, gait issues, migraines, eye pain, etc.
I've never been offered any kind of treatment (other than the cutting of a nerve) for my symptoms. Just sent home to suffer and wonder if it was all in my head. Sometimes I feel like a psychological guinea pig. :(
God Bless,
Bethany
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
