Aa
Inital Attack Duration
I first started to notice changes in Oct. 2015. I had an increase in migraines; intensity and frequency. I went from having 6 a year to 14-20 a month with multiple trips to the ER. My Nero (migraine specialist) started me on Topamax; side effects were gone within 3 weeks of target dose of 100mg a day...about middle of December. Right after Christmas the 28th to be exact I had horrible pain behind my left eye with movement, and it was slightly blurry. I had an eye check up the next day so I addressed it with her. My pressures were all normal. She was concerned and wanted me to contact my Neuro because she thought I could be suffering from Optic Neuritis; nothing I took helped my discomfort. I called him, and he blew it off. This discomfort went on for 3 weeks mind you. On top of that I noticed that my face would go numb, and I would tingle on the left side of my body only. I was also having severe dizzy spells even while sitting. I tried to convey to him that at times it feels like I'm bouncing while sitting; after long durations without changing positions.
The end of January comes along and warm water feels very hot on my back, and my neck is hypersensitive to touch. Any light touch would send it into a wounderful spasm. Within 3 days I was in full blown constant "spasm" and any touch, even the wind blowing would make it worse. When he saw me he gave me Zanaflex and told me it was stress from nursing school, but ordered a while new set of MRI's (head & cervical spine w/ & w/out contrast, thoracic spine w/out contrast) and basically said...if they're normal I don't know what to tell you. I have lesion in my R frontal lobe it does not enhance but it can be seen with and without contrast.
When I could not function on the Zanaflex because I was too tired and asked for Baclofen he told me I just needed to see a psychiatrist. I told him my head stops moving when I touch my face, and did he think it was Dystonia...his words were "No, you're just in need of a psychiatrist. There is nothing physically wrong with you." The movement disorder doctor who was in his office did see me said I had Dystonia, but her notes states it was in my head. My head "twitched" for 5 months. I was not stressed about being in school. I was doing extremely well, and didn't even need to study.
I went and had an elective psychiatric evaluation done, and to figure not somatitization or conversion disorder.
For 5 months I dealt with a twitching head, 3 weeks painful eye movements, 1 week a tight sensation around my left knee, 3 months my last 2 toes on my left foot were numb all the time, 3 months of bladder/bowel problems, extreme fatigue, painful muscles in my legs. Before all of this happened I had a severe sinus infection in September.
Finally in April 2015 I got to my new Neuro. He ordered a new MRI (T3) I had an enhancing lesion in my L ON, and they same lesion on my R F.L. Some of my symptoms were subsiding. He decided to order a L.P. No OG bands, no protein, but my Igg index was elevated, and my Serum Igg was way down. Makes sense since I catch every cold, cough, sinus infection under the sun, and I can't kick it.
I did notice a few years ago that I can not handle the heat at all...it makes me itch, and very tired. It still affects me the same way now. I never thought much of it until the last year.
Within the last few months I've had a lot of problems with my legs. Mostly my right one; thigh to be exact. It feels like there is a constant knot, they ache, and at times I walk horribly because of the pain. I have had full blown spasms so bad while standing that I have to lean on whatever object is nearby to get my weight off of them. Being a nurse I work with some awesome doctors, and PA's (one is my PA from my PCP office). I didn't realize that I was experiencing spasticity. Now I take 20mg of Baclofen every 6 hours and sometimes that doesn't feel like it's enough. My PA also me Solumedrol pack to help break the spasticity cycle I was in recently. I notice its worse when I drive, and sit for too long. The one thing that concerns me now is I still can't fully straighten my leg, and it looks like my leg is turned out? What's worse is my Neuro says I may have CIS, but I don't have MS. Yet, I had an Internist tell me I absolutely do based on my last MRI stating that a demylinating disease should not be ruled out, and my symptoms taken collectively as a whole. She's been a Dr. for 20 years, and worked with hundreds of MS patients. Now I'm waiting to see the MS Specialist in my area. I'm so confused.
How long does everyone else's exacerbation last? What triggers them? How long did it take to get a diagnosis? What makes your spasticity better if you suffer from it?
The end of January comes along and warm water feels very hot on my back, and my neck is hypersensitive to touch. Any light touch would send it into a wounderful spasm. Within 3 days I was in full blown constant "spasm" and any touch, even the wind blowing would make it worse. When he saw me he gave me Zanaflex and told me it was stress from nursing school, but ordered a while new set of MRI's (head & cervical spine w/ & w/out contrast, thoracic spine w/out contrast) and basically said...if they're normal I don't know what to tell you. I have lesion in my R frontal lobe it does not enhance but it can be seen with and without contrast.
When I could not function on the Zanaflex because I was too tired and asked for Baclofen he told me I just needed to see a psychiatrist. I told him my head stops moving when I touch my face, and did he think it was Dystonia...his words were "No, you're just in need of a psychiatrist. There is nothing physically wrong with you." The movement disorder doctor who was in his office did see me said I had Dystonia, but her notes states it was in my head. My head "twitched" for 5 months. I was not stressed about being in school. I was doing extremely well, and didn't even need to study.
I went and had an elective psychiatric evaluation done, and to figure not somatitization or conversion disorder.
For 5 months I dealt with a twitching head, 3 weeks painful eye movements, 1 week a tight sensation around my left knee, 3 months my last 2 toes on my left foot were numb all the time, 3 months of bladder/bowel problems, extreme fatigue, painful muscles in my legs. Before all of this happened I had a severe sinus infection in September.
Finally in April 2015 I got to my new Neuro. He ordered a new MRI (T3) I had an enhancing lesion in my L ON, and they same lesion on my R F.L. Some of my symptoms were subsiding. He decided to order a L.P. No OG bands, no protein, but my Igg index was elevated, and my Serum Igg was way down. Makes sense since I catch every cold, cough, sinus infection under the sun, and I can't kick it.
I did notice a few years ago that I can not handle the heat at all...it makes me itch, and very tired. It still affects me the same way now. I never thought much of it until the last year.
Within the last few months I've had a lot of problems with my legs. Mostly my right one; thigh to be exact. It feels like there is a constant knot, they ache, and at times I walk horribly because of the pain. I have had full blown spasms so bad while standing that I have to lean on whatever object is nearby to get my weight off of them. Being a nurse I work with some awesome doctors, and PA's (one is my PA from my PCP office). I didn't realize that I was experiencing spasticity. Now I take 20mg of Baclofen every 6 hours and sometimes that doesn't feel like it's enough. My PA also me Solumedrol pack to help break the spasticity cycle I was in recently. I notice its worse when I drive, and sit for too long. The one thing that concerns me now is I still can't fully straighten my leg, and it looks like my leg is turned out? What's worse is my Neuro says I may have CIS, but I don't have MS. Yet, I had an Internist tell me I absolutely do based on my last MRI stating that a demylinating disease should not be ruled out, and my symptoms taken collectively as a whole. She's been a Dr. for 20 years, and worked with hundreds of MS patients. Now I'm waiting to see the MS Specialist in my area. I'm so confused.
How long does everyone else's exacerbation last? What triggers them? How long did it take to get a diagnosis? What makes your spasticity better if you suffer from it?
Ms limbo is difficult.
My neuro told me definitely not ms for a year and a half, then told me was and scheduled me for an LP.
It came back negative. He then informed me it DEFINITELY wasn't ms. ... Until he diagnosed me a year later.
It isn't ms until the ms neurologist decides it is. I was in limbo for three years and seden (?) relapses.
In my case I had two other neurologists that intervened by speaking to him.
I'm unsure why, in ms neuro training school, you are taught it is better to say definitely not ms when you are really thinking "maybe " or "not likely".
It may be reassuring if you've only had one relapse but I had many by this point.
I have a blog post where I discuss strategies for surviving limbo. If you're interested, the address is on my profile page.
Sorry you're in "wait" mode ..
It can be very frustrating ...
My neuro told me definitely not ms for a year and a half, then told me was and scheduled me for an LP.
It came back negative. He then informed me it DEFINITELY wasn't ms. ... Until he diagnosed me a year later.
It isn't ms until the ms neurologist decides it is. I was in limbo for three years and seden (?) relapses.
In my case I had two other neurologists that intervened by speaking to him.
I'm unsure why, in ms neuro training school, you are taught it is better to say definitely not ms when you are really thinking "maybe " or "not likely".
It may be reassuring if you've only had one relapse but I had many by this point.
I have a blog post where I discuss strategies for surviving limbo. If you're interested, the address is on my profile page.
Sorry you're in "wait" mode ..
It can be very frustrating ...
1 Comments
Thank you! I will definitely read it. I take any suggestions at this point. :-)
COMMUNITY LEADER
Hi and welcome to our little MS community,
It's hard to think you've basically only had one long continual demyelinating event......IF I understand what your saying, you only have 1 or 2 brain lesions of any kind in total, the left optic nerve enhancing lesion (L ON)? would definitely put CIS or early MS at the top of your potential causation list but with the types of symptoms you've experienced since this began, there would be an expectation for there to be more MRI evidence and or corresponding abnormal clinical signs.
Do you know what abnormalities showed up during your neurological clinical exams? I'm thinking your clinical exams could be showing lesion damage that the MRI just isn't picking up yet, so whilst your MRI says you have 1 enhancing optic lesion and 1 frontal lobe, those locations don't account for the majority of your symptoms and your clinical signs may be indicating there is more diagnostic evidence of MS....
I'd recommend a second opinion with an MS specialist, if your neuro clinical signs are normal, it's possibly optic neuritis which may never progress to MS but that still leaves the question of what's causing all the other symptoms then......i'm still thinking your clinical signs are likely abnormal, if so you've probably had more than one demyelinating attack, it's possible you've got spinal cord lesion(s) with those types of symptoms and they can be a lot harder to show up on an MRI but still evident from your clinical abnormalities.
Q: How long does everyone else's exacerbation last?
A: how long is a piece of string....they can be anything from 24 hours to multiple months, although it's more typical to be working on recovery or regaining skills for months after a relapse.
Q: What triggers them?
A: There isn't an actual trigger of true relapses, they still don't exactly know why the immune system starts attacking what it shouldn't. Pseudo relapses have known triggers, heat exposure, infections, over doing the physical activity etc temporarily return or worsen preexisting issues until an MSer has cooled down and or rested enough to return to their normal again.
Q: How long did it take to get a diagnosis?
A: Some people are dx on their MRI evidence almost straight away if they meet the MS Mcdonald criteria, a couple of years is probably more common and then there are others who didn't get dx with MS for decades.
Q: What makes your spasticity better if you suffer from it?
A: physical therapy, yoga, water aerobics, stretching etc and medication eg baclofen, clonazepam, Valium, Zanaflex etc.
Hope that helps........JJ
It's hard to think you've basically only had one long continual demyelinating event......IF I understand what your saying, you only have 1 or 2 brain lesions of any kind in total, the left optic nerve enhancing lesion (L ON)? would definitely put CIS or early MS at the top of your potential causation list but with the types of symptoms you've experienced since this began, there would be an expectation for there to be more MRI evidence and or corresponding abnormal clinical signs.
Do you know what abnormalities showed up during your neurological clinical exams? I'm thinking your clinical exams could be showing lesion damage that the MRI just isn't picking up yet, so whilst your MRI says you have 1 enhancing optic lesion and 1 frontal lobe, those locations don't account for the majority of your symptoms and your clinical signs may be indicating there is more diagnostic evidence of MS....
I'd recommend a second opinion with an MS specialist, if your neuro clinical signs are normal, it's possibly optic neuritis which may never progress to MS but that still leaves the question of what's causing all the other symptoms then......i'm still thinking your clinical signs are likely abnormal, if so you've probably had more than one demyelinating attack, it's possible you've got spinal cord lesion(s) with those types of symptoms and they can be a lot harder to show up on an MRI but still evident from your clinical abnormalities.
Q: How long does everyone else's exacerbation last?
A: how long is a piece of string....they can be anything from 24 hours to multiple months, although it's more typical to be working on recovery or regaining skills for months after a relapse.
Q: What triggers them?
A: There isn't an actual trigger of true relapses, they still don't exactly know why the immune system starts attacking what it shouldn't. Pseudo relapses have known triggers, heat exposure, infections, over doing the physical activity etc temporarily return or worsen preexisting issues until an MSer has cooled down and or rested enough to return to their normal again.
Q: How long did it take to get a diagnosis?
A: Some people are dx on their MRI evidence almost straight away if they meet the MS Mcdonald criteria, a couple of years is probably more common and then there are others who didn't get dx with MS for decades.
Q: What makes your spasticity better if you suffer from it?
A: physical therapy, yoga, water aerobics, stretching etc and medication eg baclofen, clonazepam, Valium, Zanaflex etc.
Hope that helps........JJ
3 Comments
I meant to say it started in Oct. 2014...sorry brain fog. Lol! I had a good 6-7 months without twitching, tingling, numbness, squeezing. I kept my stupid L hand tremor that never fully goes away, but will get worse at times. I did have 1 intractable Migraine in Aug and Sept of 2015. I missed over 15 days of work from them. I had to take steroids for both of them, and multiple trips to the hospital.
I think the hardest part for me is the heat, and the spasticity. Because I can't enjoy the summer with my children. Also, it's hard to walk sometimes...it looks like I'm limping, but I'm not...it's hard to explain. If I want to cross my legs or move them at home I have to help them along, and they feel heavy.
I think the hardest part for me is the heat, and the spasticity. Because I can't enjoy the summer with my children. Also, it's hard to walk sometimes...it looks like I'm limping, but I'm not...it's hard to explain. If I want to cross my legs or move them at home I have to help them along, and they feel heavy.
You would be correct. I only have 2 lesions. My L optic nerve that has since "healed" it no longer enhances on my latest MRI and my R F.L. lesion. I had a spinal MRI done, but my jerk of a Neuro did it without contrast. What a waste of a MRI. I was wondering would it be possible to have lesions that aren't showing.
I have end gaze nystagmus in my L eye new in the last 9 months. I have slowed or absent reflexes on the R side sometimes I have had increased to normal reflexes on my L side.
I went to my Neuro last month and he had me walk and he, and then he kept telling me to walk. He didn't say anything. He just says no MS. That's when he pulled up my MRI report and it said demylinating disease should not be ruled out. I saw something about temporal sclerosis. He didn't explain it to me and brushed it off. I got a copy of my report, and took it to a collegue of mine (a very well respected doctor...who works with chronically ill and MS patients). She pulled up my scans, read my reports, my chart...and told me that he was crazy to say i didn't have MS. All i wanted was an explanation of what temporal sclerosis was...I didn't need anything else. She set me up with her internist for the referral to the MS specialist...his dx was probable MS. That's why I feel so confused. How can they say one thing and the Neuro say another.
I have end gaze nystagmus in my L eye new in the last 9 months. I have slowed or absent reflexes on the R side sometimes I have had increased to normal reflexes on my L side.
I went to my Neuro last month and he had me walk and he, and then he kept telling me to walk. He didn't say anything. He just says no MS. That's when he pulled up my MRI report and it said demylinating disease should not be ruled out. I saw something about temporal sclerosis. He didn't explain it to me and brushed it off. I got a copy of my report, and took it to a collegue of mine (a very well respected doctor...who works with chronically ill and MS patients). She pulled up my scans, read my reports, my chart...and told me that he was crazy to say i didn't have MS. All i wanted was an explanation of what temporal sclerosis was...I didn't need anything else. She set me up with her internist for the referral to the MS specialist...his dx was probable MS. That's why I feel so confused. How can they say one thing and the Neuro say another.
My internist dx for MS specialist is Probable MS.
No one can say how long an attack will last. It is good you are seeing the MS Specialist. None of us can say whether it is MS or not. The neurologist will help you.
My first MRI was classic for MS I had Dawson's finger. It took two years for a diagnosis with all my tests even LP showing MS.
Please break up your writing. Many of us have permanent eye sight issues and can't read one big block. Thanks,
Alex
My first MRI was classic for MS I had Dawson's finger. It took two years for a diagnosis with all my tests even LP showing MS.
Please break up your writing. Many of us have permanent eye sight issues and can't read one big block. Thanks,
Alex
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