dje27
06-06-2006, 11:21 AM
Hi everyone, I am getting so frustrated. I have been to two neurologists who say they dont think it is MS. My symptoms are:
fatigue
muscle fasciculations
right leg numbness with right foot tingle
right leg feels heavy at times
severe pain leg at times
Had MRI which showed white matter lesions. Had another MRI 6 months later, showed a few more.
My question is, should I just let it go since I have been to two neuros.? My PCP said I am too young to be having white matter lesions. The radiologists who reviewed the MRI said in the report, cannot rule out MS.
Neros said lesions are in the wrong place for MS??????? Can anyone explain this to me. Thank you sooooooo much.
fatigue
muscle fasciculations
right leg numbness with right foot tingle
right leg feels heavy at times
severe pain leg at times
Had MRI which showed white matter lesions. Had another MRI 6 months later, showed a few more.
My question is, should I just let it go since I have been to two neuros.? My PCP said I am too young to be having white matter lesions. The radiologists who reviewed the MRI said in the report, cannot rule out MS.
Neros said lesions are in the wrong place for MS??????? Can anyone explain this to me. Thank you sooooooo much.
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want2run26
06-06-2006, 01:55 PM
I don't know what to say other than I am in the same boat as you are.
I have symptoms that could be MS or not I guess. I have white matter lesions, clean C spin MRI and they are just not sure what to tell me.
I could care less about the lesions, if I felt fine then so what?! The problem is when symptoms come out of nowhere it seems like there should be something that is causing it so if not MS then WHAT??
I have symptoms that could be MS or not I guess. I have white matter lesions, clean C spin MRI and they are just not sure what to tell me.
I could care less about the lesions, if I felt fine then so what?! The problem is when symptoms come out of nowhere it seems like there should be something that is causing it so if not MS then WHAT??
lestoby
06-06-2006, 03:43 PM
Welcome to my world of "Limboland".
I have almost the same identical symptoms as you, except I have intermittent R eye blurriness too. I only have 1 attack and 2 lesions.
I went to 2 neuros myself and the last one said something about the lesions are not perpendicular to the ventricle (Huh?) :rolleyes:
Most days, I feel OK and on a pain scale of 1-10, my symptoms are in the 3-5 range. So, I am no longer "desperate" to get a dx.
Many people on this board were able to get a lumbar puncture (only after insisting on one to the doctor) and this is how they were able to come up with a 2nd clinical diagnostic conclusion that they had MS. You may want to go back to one of the neuro's and insist that they do a lumbar puncture.
However, I am surprised that your 2nd MRI was not considered another clinical tool to meet the McDonald Criteria of "dissemination in time" if more lesions appeared.
Best wishes to you
:angel:
I have almost the same identical symptoms as you, except I have intermittent R eye blurriness too. I only have 1 attack and 2 lesions.
I went to 2 neuros myself and the last one said something about the lesions are not perpendicular to the ventricle (Huh?) :rolleyes:
Most days, I feel OK and on a pain scale of 1-10, my symptoms are in the 3-5 range. So, I am no longer "desperate" to get a dx.
Many people on this board were able to get a lumbar puncture (only after insisting on one to the doctor) and this is how they were able to come up with a 2nd clinical diagnostic conclusion that they had MS. You may want to go back to one of the neuro's and insist that they do a lumbar puncture.
However, I am surprised that your 2nd MRI was not considered another clinical tool to meet the McDonald Criteria of "dissemination in time" if more lesions appeared.
Best wishes to you
:angel:
NataliesMom
06-06-2006, 08:00 PM
I don't know, it certainly looks as if you have alot of the sx of MS. Personally I'd try a third Neuro. Is there one in your area who specialized in MS, or perhaps an MS clinic? Check the NMSS website to see if there is. I have lesions in my white matter and I do have MS. Do you have cognitive problems? That's what causes my cognitive problems are those little buggers hanging out in my white matter on the left side. Personally, I really don't care for my Neuro but he is very well respected in our area and hold lectures and is always up to date on research and travels any where there is something new going on in the world of MS. He keeps way up on top of it. That's the kind of doctor you want to find. We call him the 5 minute man but he knows his stuff and I trust him.
Please don't give up. I think that's what some of the doctor's want. They don't want to deal with you because they don't see the "classic" MS stuff. That's the problem MS is a freaky disease and does some freaky stuff what you need is a freaky doctor who will listen to you. You may have to wait months to see him, but they are well worth the wait.
Good luck to you. :angel:
Please don't give up. I think that's what some of the doctor's want. They don't want to deal with you because they don't see the "classic" MS stuff. That's the problem MS is a freaky disease and does some freaky stuff what you need is a freaky doctor who will listen to you. You may have to wait months to see him, but they are well worth the wait.
Good luck to you. :angel:
dje27
06-06-2006, 10:35 PM
thank you all for getting back to me. I am just like you, I just want to feel better again. This has been going for over a year. Maybe I am looking too hard for a diagnosis. But when you know something is wrong and to hear from docs that it is nothing, it is very frustrating. I just want to feel healthy again.
lilc
06-06-2006, 11:08 PM
Um, excuse me. If you are "too young" for MS, what might explain the lesions?
OK. Have you seen your MRIs? If not, get copies from the place you had them done. (If you are too young, get your parents to request them.) In the meantime, google for MRI images of MS. Yes, "typical" MS lesions are in the periventricular region, or perpendicular to it. But what in the world is "typical" about MS???
I agree, a 3rd neuro is in order. The first 2 were obviously lazy.
OK. Have you seen your MRIs? If not, get copies from the place you had them done. (If you are too young, get your parents to request them.) In the meantime, google for MRI images of MS. Yes, "typical" MS lesions are in the periventricular region, or perpendicular to it. But what in the world is "typical" about MS???
I agree, a 3rd neuro is in order. The first 2 were obviously lazy.
duttin
06-06-2006, 11:35 PM
Has your neuro read the MRI's or is he going off the radiologist report?The lesions are atypical for MS as lesions in the grey matter are atypical with MS.I'd find a Neuro at a MS clinic.MS usually affects people from the ages of 20-40,but has also affected younger and older adults.Lesions in the central nervous system are not normal for any disorder.I'd go for the 3rd neuro.Keep us posted.
annieloo
06-06-2006, 11:46 PM
I don't know what to say other than I am in the same boat as you are.
I have symptoms that could be MS or not I guess. I have white matter lesions, clean C spin MRI and they are just not sure what to tell me.
I could care less about the lesions, if I felt fine then so what?! The problem is when symptoms come out of nowhere it seems like there should be something that is causing it so if not MS then WHAT??
I have many syptoms of ms but my doc doesnt think its that. having mri of brain tomorrow. I have really bad hip and knee pain, dont know if that is symptom or not,, I keep losing my balance, but not sure since Ive always been king of clumpsy. Just have weird feeling down spine at nite when I try to sleep. and have feeling of something priking me and lightheadedness and bad sinus headaches. Just wish I knew what was wrong,, doc says I have heriniated disc,, but shouldnt cause all these symptoms. he keeps saying most likely they will go away.. I dont know.
I have symptoms that could be MS or not I guess. I have white matter lesions, clean C spin MRI and they are just not sure what to tell me.
I could care less about the lesions, if I felt fine then so what?! The problem is when symptoms come out of nowhere it seems like there should be something that is causing it so if not MS then WHAT??
I have many syptoms of ms but my doc doesnt think its that. having mri of brain tomorrow. I have really bad hip and knee pain, dont know if that is symptom or not,, I keep losing my balance, but not sure since Ive always been king of clumpsy. Just have weird feeling down spine at nite when I try to sleep. and have feeling of something priking me and lightheadedness and bad sinus headaches. Just wish I knew what was wrong,, doc says I have heriniated disc,, but shouldnt cause all these symptoms. he keeps saying most likely they will go away.. I dont know.
annieloo
06-06-2006, 11:49 PM
have many syptoms of ms but my doc doesnt think its that. having mri of brain tomorrow. I have really bad hip and knee pain, dont know if that is symptom or not,, I keep losing my balance, but not sure since Ive always been king of clumpsy. Just have weird feeling down spine at nite when I try to sleep. and have feeling of something priking me and lightheadedness and bad sinus headaches. Just wish I knew what was wrong,, doc says I have heriniated disc,, but shouldnt cause all these symptoms. he keeps saying most likely they will go away.. I dont know.
dje27
06-07-2006, 12:36 AM
I am 46 years old which is on the older side of a MS diagnosis but yet the lesions on the white matter, I am too young to be experiencing those. i.e. stroke, ischemic changes, etc. My first neuro even told me if he saw this MRI in a 65 year old he would think nothing of it. I am 46. Soooooooo am I 46 going on 65??????????? I guess from what the second neuro said (he looked at my actual MRI with me) he said the lesions dont coincide with my symptoms. Whatever, I know how i feel, and I know weird things are going on.
want2run26
06-07-2006, 03:24 PM
I'm glad to hear others are going through similar appts. as me :)
I have been printing alot of journal articles to take with me to my next appt. There are alot of articles that talk about how #1 not all MRIs will pick up all lesions, #2 how all lesions don't necessarily correlate to symptoms #3 not all of those dx had the typical lesions.
I do not want to be argumentative with my doc, but as someone else said I know something is not right, if you ruled out ALL other possibilities than what could it be? (I have 14 white matter lesions that aren't typical MS but symptoms that are exactly MS)
Some days I just want to cry and scream out of frustration!
I have been printing alot of journal articles to take with me to my next appt. There are alot of articles that talk about how #1 not all MRIs will pick up all lesions, #2 how all lesions don't necessarily correlate to symptoms #3 not all of those dx had the typical lesions.
I do not want to be argumentative with my doc, but as someone else said I know something is not right, if you ruled out ALL other possibilities than what could it be? (I have 14 white matter lesions that aren't typical MS but symptoms that are exactly MS)
Some days I just want to cry and scream out of frustration!
dje27
06-07-2006, 07:24 PM
want2run.....can I cry with you????? We know our bodies and we know how we feel darn it. We know something is not right. But having two neuros say probable. What makes people get fast diagnosis and others like us have to wait and wait. Wish I could understand.
kfelcher
06-13-2006, 12:08 PM
I understand your frustration, I am going through the same thing. Only I have one dr. who definetly believes I am going through with early stages of MS.
I have had several mri's, the last one showed 2 small areas of inflammation(lesions), I guess. My spinal tap was normal(mine was very uncomfortable). However, for 2 years now I have had one thing after another happening. In 6/04 I had a partial seizure, left side only. Right after that I started what I believed to be a cold. This lasted until 11/04, I had severe breathing problems, was on 5 inhalers, prednisone, and painkillers, they dx'd me as a viral infection and walking pnemonia. This left me very weak, and I just kept getting weaker, by 2/05 I was falling alot, and by 5/05 I started getting severe pain in left side, mostly back and leg area. This has just increased to where now I'm out of work and still looking for answers. When I look at postings, and all of the information I can find, I have every symptom, and yet I wait. Now what I get alot of is mid calf down on both legs is a feeling of ice cold, but yet burning, my feet go to sleep alot, and just overall hate getting out of bed everyday, to face this another day. But I will. So please keep on looking, go to another neuro. We know our bodies and We know something is wrong. We have to fight for ourselves, because in their eyes, we are the next car payment, house payment. Then you find that one who remembers you are human.
I have had several mri's, the last one showed 2 small areas of inflammation(lesions), I guess. My spinal tap was normal(mine was very uncomfortable). However, for 2 years now I have had one thing after another happening. In 6/04 I had a partial seizure, left side only. Right after that I started what I believed to be a cold. This lasted until 11/04, I had severe breathing problems, was on 5 inhalers, prednisone, and painkillers, they dx'd me as a viral infection and walking pnemonia. This left me very weak, and I just kept getting weaker, by 2/05 I was falling alot, and by 5/05 I started getting severe pain in left side, mostly back and leg area. This has just increased to where now I'm out of work and still looking for answers. When I look at postings, and all of the information I can find, I have every symptom, and yet I wait. Now what I get alot of is mid calf down on both legs is a feeling of ice cold, but yet burning, my feet go to sleep alot, and just overall hate getting out of bed everyday, to face this another day. But I will. So please keep on looking, go to another neuro. We know our bodies and We know something is wrong. We have to fight for ourselves, because in their eyes, we are the next car payment, house payment. Then you find that one who remembers you are human.
dje27
06-13-2006, 07:39 PM
kfelcher,
I know exactly what you mean. I just want to feel better. The most annoying symptom for me is fatigue. That is really getting to me. I have more bad days than good, it seems. Always tired. We have to hang in there I guess. I keep telling myself it could be worse.
I know exactly what you mean. I just want to feel better. The most annoying symptom for me is fatigue. That is really getting to me. I have more bad days than good, it seems. Always tired. We have to hang in there I guess. I keep telling myself it could be worse.
kfelcher
06-13-2006, 08:22 PM
:angel: let's all hope we get our angel, and they diagnose us with if not ms, then with something. Other than making us feel crazy. I pray we all find some comfort and relief. Let's hang in there and find comfort in all of us, at least we know we're not crazy, and these symptoms are very accurate. Take care all.
Tabby111
06-18-2006, 04:59 PM
Hello DJE27 and all. I had major MS symptoms for 4 months straight last winter, including tremendous fatigue, pain, and numbness that prevented me, former marathon runner, from walking across the room at times. CAT scan and bloodwork ruled out anything they can easily measure and doctors told me it was probably MS (which I already knew--it runs in my family)
I opted to not have any MRIs because whether lesions are present or not is not a definitive diagnosis for MS (some Drs have a contrary opinion, but it is just an opinion and what truly caused MS is very much a mystery) Some people with M.S. symptoms have had MRIs showing no lesions, and some people WITHOUT M.S. do show some lesions on brain and/or spinal cord. Why do Drs recommend MRI's to dx M.S.? The price tag may be the answer. Healthcare is big business.
I have made nearly a full recovery by making lifestyle changes and doing special spine stretches. Please check out my post, "10 things that work" at the following URL:
http://www.healthboards.com/boards/showthread.php?t=401194
I hope it helps others too. :)
I opted to not have any MRIs because whether lesions are present or not is not a definitive diagnosis for MS (some Drs have a contrary opinion, but it is just an opinion and what truly caused MS is very much a mystery) Some people with M.S. symptoms have had MRIs showing no lesions, and some people WITHOUT M.S. do show some lesions on brain and/or spinal cord. Why do Drs recommend MRI's to dx M.S.? The price tag may be the answer. Healthcare is big business.
I have made nearly a full recovery by making lifestyle changes and doing special spine stretches. Please check out my post, "10 things that work" at the following URL:
http://www.healthboards.com/boards/showthread.php?t=401194
I hope it helps others too. :)