Kissa
09-04-2008, 06:41 AM
Hi, I am new on this board. Generally I'm on the pain or back board.
I have had two doctors suggest 3 times in the last year that I may have MS. I am awaiting my MRI with and Without contrast. I had a Cervical MRI just two or so months ago as I do have herniations that are new post op a 4 level fusion and a broken screw.
My symptoms are in regards to MS constant dizzy spells not related to getting up or down, they come out of the blue. Terrible intolerance to heat. I sleep with a fan even when it's cool outside and only a sheet, had my thyroid checked, it's in great shape as is my hormones. Dry eyes but oddly enough at night they drip (cat allergies maybe?)
Now here's the tricky part, I have a genetic disease that's called Ehlers Danlos which involves collagen and has many of the same symptoms of MS. I also have IBS, Colitis, FMS, CFS which I often debate as I feel they are garbage pail dx's but that's only my opinion. I did have Epstien Barr virus many moons ago, have had some 15 major surgeries for joint replacements and reconstructions etc. I have suffered with OA since age 10 and chronic pain since then as well.
I numbness in various parts of my body which can be explained by herniated disks, so it's hard to ascertain if it's an MS symptom or a herniation symptom. I sometimes have difficult breathing in deep, chest ct's, xray's and the like do show some cysts but my breathing scores are pretty incredible for someone my age and doctors are stumped.
I have these most bizzare pains in my underarms / armpits and the inside of my thighs, always the same spot, always the same pain, it's a burning pain like when you get an injection, its several inches long in the area and no one can explain this.
I can go on and on with a vast amount of symptoms that can be explain by other diagnosis but this frustrates me as I was not even DX'd with EDS until my thirties, doctors kept telling me I had some rare form of arthritis so the new MS theory bothers me.
I know I'll probably get my answer after the MRI's, unfortunately I can't see the MS specialist until October but I can get the report immediately. Other members of my family have been suspected of MS but none properly tested.
I guess I'm just reaching out, I've read so many posts here and I keep thinking gee I go through that but they call it this not that. So how does one differentiate between MS and other diseases, especially if no lesions appear?
I feel like I'm on a frustrating roller coaster ride. Thanks for listening
Barb
I have had two doctors suggest 3 times in the last year that I may have MS. I am awaiting my MRI with and Without contrast. I had a Cervical MRI just two or so months ago as I do have herniations that are new post op a 4 level fusion and a broken screw.
My symptoms are in regards to MS constant dizzy spells not related to getting up or down, they come out of the blue. Terrible intolerance to heat. I sleep with a fan even when it's cool outside and only a sheet, had my thyroid checked, it's in great shape as is my hormones. Dry eyes but oddly enough at night they drip (cat allergies maybe?)
Now here's the tricky part, I have a genetic disease that's called Ehlers Danlos which involves collagen and has many of the same symptoms of MS. I also have IBS, Colitis, FMS, CFS which I often debate as I feel they are garbage pail dx's but that's only my opinion. I did have Epstien Barr virus many moons ago, have had some 15 major surgeries for joint replacements and reconstructions etc. I have suffered with OA since age 10 and chronic pain since then as well.
I numbness in various parts of my body which can be explained by herniated disks, so it's hard to ascertain if it's an MS symptom or a herniation symptom. I sometimes have difficult breathing in deep, chest ct's, xray's and the like do show some cysts but my breathing scores are pretty incredible for someone my age and doctors are stumped.
I have these most bizzare pains in my underarms / armpits and the inside of my thighs, always the same spot, always the same pain, it's a burning pain like when you get an injection, its several inches long in the area and no one can explain this.
I can go on and on with a vast amount of symptoms that can be explain by other diagnosis but this frustrates me as I was not even DX'd with EDS until my thirties, doctors kept telling me I had some rare form of arthritis so the new MS theory bothers me.
I know I'll probably get my answer after the MRI's, unfortunately I can't see the MS specialist until October but I can get the report immediately. Other members of my family have been suspected of MS but none properly tested.
I guess I'm just reaching out, I've read so many posts here and I keep thinking gee I go through that but they call it this not that. So how does one differentiate between MS and other diseases, especially if no lesions appear?
I feel like I'm on a frustrating roller coaster ride. Thanks for listening
Barb
Sponsor
MSJayhawk
09-04-2008, 01:15 PM
While the symptoms present with MS, there are other possibilities. You have your doctors looking in the right direction. Patience is the key. When your results come back, if they mention MS, ask them to show you the evidence. This should be the case with any diagnosis. Tell them to show you. That will allow you to receive reassurances that they have done their job. Patience is difficult, but it is necessary.
DavidLeeK
09-04-2008, 03:45 PM
i know part of your feeling, i have MS, but also have a herniated disc at C5/C6 in my neck, most of my symptoms have remitted to some degree, except my back, arm, hand, fingers, with the thumb and index finger being the most numb and the nerve being pushed on my my disc causes that exact numbness
the neurologist believes that everything that has been a problem during this attack was ms related and that herniated disc has been there for awhile, but still make me think of it because the day the attack started i was picking up heavy logs
the neurologist believes that everything that has been a problem during this attack was ms related and that herniated disc has been there for awhile, but still make me think of it because the day the attack started i was picking up heavy logs
Nenu
09-04-2008, 05:35 PM
So how does one differentiate between MS and other diseases, especially if no lesions appear?
I feel like I'm on a frustrating roller coaster ride. Thanks for listening
Barb
Heya Barb. Nice to see you here (although, it's unfortunate what has brought you this way).
Many different tests are used to diagnose MS. It's a complicated process.
The initial test is MRI. Be sure they're doing all the way from the top (brain) to the bottom (spine) in your MRI. You can still be diagnosed without lesions (more in a sec), and you can have no lesions on your brain, lesions on your spine, or you can have them in both places.
Evoked potentials is a non invasive way of testing that is also used. Think of the walking down a straight line, 1 foot in front of the other, touching your fingertips to your nose, little mallet hitting your knee to test reflexes...
Blood work, and lots of it usually. This is to rule out 'mimics' that can be found in blood work, including other autoimmune diseases, thyroid, diabetes, vitamin deficiencies.
Lumbar puncture (aka spinal tap). This is to check for "obands". If they're present, that's usually a positive for MS (however, obands can present with other conditions as well).
History, including family history will be looked over.
All these tests will be compiled and most neuros refer to what is called the McDonald criteria. Don't ask any of us to explain it, none of us understand it, that's what the neuro is there for ;).
Best of luck with your testing, and don't sweat it. Even I found the LP procedure (it sounds scary) wasn't that bad at all.
I feel like I'm on a frustrating roller coaster ride. Thanks for listening
Barb
Heya Barb. Nice to see you here (although, it's unfortunate what has brought you this way).
Many different tests are used to diagnose MS. It's a complicated process.
The initial test is MRI. Be sure they're doing all the way from the top (brain) to the bottom (spine) in your MRI. You can still be diagnosed without lesions (more in a sec), and you can have no lesions on your brain, lesions on your spine, or you can have them in both places.
Evoked potentials is a non invasive way of testing that is also used. Think of the walking down a straight line, 1 foot in front of the other, touching your fingertips to your nose, little mallet hitting your knee to test reflexes...
Blood work, and lots of it usually. This is to rule out 'mimics' that can be found in blood work, including other autoimmune diseases, thyroid, diabetes, vitamin deficiencies.
Lumbar puncture (aka spinal tap). This is to check for "obands". If they're present, that's usually a positive for MS (however, obands can present with other conditions as well).
History, including family history will be looked over.
All these tests will be compiled and most neuros refer to what is called the McDonald criteria. Don't ask any of us to explain it, none of us understand it, that's what the neuro is there for ;).
Best of luck with your testing, and don't sweat it. Even I found the LP procedure (it sounds scary) wasn't that bad at all.
duttin
09-04-2008, 11:44 PM
Barb,
Patients is the key to the roller coaster of a MS diagnosis with so many mimicers.
I hope the MS DR. you are seeing has good back ground.
I was diagnosed with MS ten years ago after a tramatic back surgery.
I have been on the pain web site, not only do I have MS I also have chronic bilateral adhesive arachnoiditis. A nerve disease in the lumbar vertabra's , it takes a good DR. to seperate the two.
I do see a DR in Cleveland twice a year.
The mri's may help with a dx.But as mentioned earlier many test may be ran to make sure its not a mimicer of MS.
Sorry to here that MS maybe a possibility,glad you have joined us here also.
Keep asking the questions,many here will help.
Patients is the key to the roller coaster of a MS diagnosis with so many mimicers.
I hope the MS DR. you are seeing has good back ground.
I was diagnosed with MS ten years ago after a tramatic back surgery.
I have been on the pain web site, not only do I have MS I also have chronic bilateral adhesive arachnoiditis. A nerve disease in the lumbar vertabra's , it takes a good DR. to seperate the two.
I do see a DR in Cleveland twice a year.
The mri's may help with a dx.But as mentioned earlier many test may be ran to make sure its not a mimicer of MS.
Sorry to here that MS maybe a possibility,glad you have joined us here also.
Keep asking the questions,many here will help.
Kissa
09-07-2008, 11:30 AM
Thanks for the advice, still waiting on the MRI. The doctor has done extensive blood during my last visit to rule out thyroid and hormone issues. All is well there. So the intolerance to heat isn't a result of either.
I did have two MRI's a few months ago on my cspine and lumbar which didn't show lesions but herniations and loss of disk height and other things. These problems have been ongoing since my teens due to an accident and also my gait being off since one leg is shorter than the other due to a congenital dislocated hip.
Could you explain the reflexes issue? I have no knee reflexes, never have, same with elbows but the knees are more prominent. Often by the time they get a reflexive response I end up leaving with a bruise or two since I bruise so easily.
I'm not familiar with the nuerologist I'll be seeing. I've seen others in the past for carpal tunnel and my neck and back.
The dizzy spells are getting pretty bad. Nothing specific induces them, I could be sitting here and poof they happen.
Hopefully the MRI will explain something. I'm certainly not wishing or wanting a dx of MS but it does explain a lot of things EDS and OA doesn't. It's more or less the not knowing part that's frustrating. I am sure you all have been there.
Will update when I get the MRI, it will be months before I see the MS doctor but I get a copy of the report and the scan within days of the scan. They have done ones in the past but it's been year, back then it was problem with severe migraines so at least they'll have a base MRI to compare it to.
Thanks again!!
I did have two MRI's a few months ago on my cspine and lumbar which didn't show lesions but herniations and loss of disk height and other things. These problems have been ongoing since my teens due to an accident and also my gait being off since one leg is shorter than the other due to a congenital dislocated hip.
Could you explain the reflexes issue? I have no knee reflexes, never have, same with elbows but the knees are more prominent. Often by the time they get a reflexive response I end up leaving with a bruise or two since I bruise so easily.
I'm not familiar with the nuerologist I'll be seeing. I've seen others in the past for carpal tunnel and my neck and back.
The dizzy spells are getting pretty bad. Nothing specific induces them, I could be sitting here and poof they happen.
Hopefully the MRI will explain something. I'm certainly not wishing or wanting a dx of MS but it does explain a lot of things EDS and OA doesn't. It's more or less the not knowing part that's frustrating. I am sure you all have been there.
Will update when I get the MRI, it will be months before I see the MS doctor but I get a copy of the report and the scan within days of the scan. They have done ones in the past but it's been year, back then it was problem with severe migraines so at least they'll have a base MRI to compare it to.
Thanks again!!
Bearygood
09-07-2008, 11:41 AM
Hi, Barb. In the spine, MS associated lesions can appear in the c-spine or t-spine, not the l-spine. In terms of reflexes, in MS what they look for is if they're hyper.
sunshine149
09-07-2008, 02:57 PM
Many of your symptoms sound similar to an array of other auto-immune diseases particularly your history with Epstein-Barr. I would suggest researching extensively auto-immune disease and you will find there are many out there, MS is just more of the more common. A lot of them are difficult to diagnose and there's cross-over of symptoms between diseases. There is an excellent book recently published called The Auto-Immune Epidemic.