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Could this diagnosis of MS be correct?
On 9/23/04, I started feeling intense constant tingling and numbness in my feet, and it quickly spread up the back of my legs and stopped at my waist. It then worked its way up the fronts of my legs as well, also stopping at the waist. Balance is impaired, but no vision problems.
My neurologist ordered brain, cervical and lumbar spine MRIs. All were normal. EMG was normal. When my doc admitted that I was "stumping" him, I switched doctors.
The new doc ordered a thoracic spine MRI, an Evoked Potentials test and an LP. The MRI and Evoked Potentials were normal. I began feeling sporadic slight tingling in left hand. I've had one brief moment of vertigo (less than 1 min.).
The LP came back with IgG Synthesis Rate of 36 and oligoclonal bands of 8. My doc diagnosed it as possible RRMS and encouraged me to begin treatment immediately.
Getting another opinion, but my original doc says it doesn't necessarily point to MS. I spoke with the Chief of Neuro. at a univ. hosp., who during a phone consult says it is not MS, but a neurophaty and agrees with that assessment after reviewing my records.
Why? (1) No lesions on any MRIs, (2) Symptoms are aypical of MS, should be bouncing around, not just staying in one place and (3) The symptoms are lasting too long; should have been gone at 6 weeks and I am now into my 10th week. Seeing another neuro on Thursday.
I find it hard to believe that with everything else being completely normal, that the LP results would warrant my beginning the drug regimen to treat MS. Thanks for any insights.
Karen
My neurologist ordered brain, cervical and lumbar spine MRIs. All were normal. EMG was normal. When my doc admitted that I was "stumping" him, I switched doctors.
The new doc ordered a thoracic spine MRI, an Evoked Potentials test and an LP. The MRI and Evoked Potentials were normal. I began feeling sporadic slight tingling in left hand. I've had one brief moment of vertigo (less than 1 min.).
The LP came back with IgG Synthesis Rate of 36 and oligoclonal bands of 8. My doc diagnosed it as possible RRMS and encouraged me to begin treatment immediately.
Getting another opinion, but my original doc says it doesn't necessarily point to MS. I spoke with the Chief of Neuro. at a univ. hosp., who during a phone consult says it is not MS, but a neurophaty and agrees with that assessment after reviewing my records.
Why? (1) No lesions on any MRIs, (2) Symptoms are aypical of MS, should be bouncing around, not just staying in one place and (3) The symptoms are lasting too long; should have been gone at 6 weeks and I am now into my 10th week. Seeing another neuro on Thursday.
I find it hard to believe that with everything else being completely normal, that the LP results would warrant my beginning the drug regimen to treat MS. Thanks for any insights.
Karen
I just wanted to give a quick update.
I went to see the new neurologist who gave me an extremely thorough exam, and said he couldn't call it MS because if that's what it is, then I've only had 1 episode and it's only occurred in 1 part of the body. From my interview with him, we also realized that my symptoms have improved somewhat since their onset.
He went on to give me another EMG (this time of the sensory nerves) which came back normal. He has now given me a diagnosis of Transverse Myelitis. I am also going to have another brain MRI (with contrast) in the end of March. And if my symptoms do get worse or start in a new body part, then I should call him.
The problem I'm having now is that all of my family and some of our friends are second guessing, telling me I need to get to a major medical center to be "properly diagnosed". I'm hesitant to do so, (1) I feel like I'm getting good common sense treatment from this neurologist, and (2) I'm concerned that if I see an MS specialist he will just jump to the conclusion that I have it. I'm quite confused and I really don't know what to do at this point.
I went to see the new neurologist who gave me an extremely thorough exam, and said he couldn't call it MS because if that's what it is, then I've only had 1 episode and it's only occurred in 1 part of the body. From my interview with him, we also realized that my symptoms have improved somewhat since their onset.
He went on to give me another EMG (this time of the sensory nerves) which came back normal. He has now given me a diagnosis of Transverse Myelitis. I am also going to have another brain MRI (with contrast) in the end of March. And if my symptoms do get worse or start in a new body part, then I should call him.
The problem I'm having now is that all of my family and some of our friends are second guessing, telling me I need to get to a major medical center to be "properly diagnosed". I'm hesitant to do so, (1) I feel like I'm getting good common sense treatment from this neurologist, and (2) I'm concerned that if I see an MS specialist he will just jump to the conclusion that I have it. I'm quite confused and I really don't know what to do at this point.
I o, f course, don't know whether you have M.S., but I do and I can tell you that it took 6 years to get a definite diagnosis. Some tests seemed to indicate it some did not. I can't even remember which did and which didn't. What I can tell you is that it is not the horrible thing I thought in the beginning. There are several different stages of M.S. and no two people follow the exact same course. I got my diagnosis about 7 years ago. I'm 42 and have 2 children and a wonderful husband. I feel like a success story because after the last round of solumedrol, a bit of time in a wheele chair and then a walker. I decided I'd had it with being a patiant. It didn't make the symptoms go away, or change the medication that I take, it just changed my way of looking at the whole business. I went back to school and now I'm finishing my bacholors degree and will be entering my graduate program next spring, with a little luck. I can tell you that I never would have imagined this when I was diagnosed, all I could imagine was the worst case scenerio. I don't want to make it sound like all is rosy, sometimes I feel like I'm hanging on by my fingernails, but I'm hanging on none the less and it's amazing how far one day at a time can take you.
Some web sources assert that the effects of poisoining from the products of Aspartame breakdown (which happens over 86F) can exactly mimic MS. Perhaps you should examine your diet to see if it contains Aspartame, and maybe also be tested for high levels of manganese, lead, and other heavy metals, if that hasn't been done already. Good luck to you.
I have had tingling/numbness in my legs, hips & thighs constantly, non-stop, for 11 months; also periodically in my feet, arms, hands, & across my shoulders and neck. Have had MRI, EMG, and blood tests for everything you can imagine--all normal. Have no emotional problems or stress or depression to cause this. Haven't had much balance problem and no vision problems to speak of. Not taking any meds. Neurologist says these are MS symptoms but I do not have MS--but no diagnosis and no other help given whatsoever. Thought it would just go away, but it hasn't. Have learned to just live with it although sometimes I worry about the long-term effects on my body. If you get ANY help I'd love to hear about it because I've given up on getting any help from doctors. Good luck.
Without examining you and reviewing your tests I cannot provide a clinical diagnosis. I would encourage you to have a second opinion at a large academic medical center, hopefully with a MS specialist. It is unclear from what you have presented if this a problem with the peripheral nerves, or the central nervous system (spinal cord and brain). The absence of MRI lesions does not exclude the diagnosis of MS. Occasionally patients can have "normal" MRI's, but still have a clinical history, examination, and other testing to suggest MS. Your history can be consistent with MS, and the duration of your symptoms can also be seen in MS. I agree that the normal MRI's and evoked potentials raise the possibility that this is not MS, and other possibilities should be considered. Hopefully the second opinion can provide some more answers. Good luck.
Okay, two other things to mention...
(1) My B12 level is 383, which although the lab report said is in normal range, from everything I'm reading, this level may be suspect.
(2) The Chief of Neuro that I spoke with noticed that the EMG run on me was done totally on the motor nerves and none of the sensory, which he says is where the problem lies. Plus, the EMG was done exactly at the 1 month mark of the Sx beginning, and he said if it's a virus causing the problems, then it may not have been strong enough to cause a reaction in the EMG. He wants me to have another EMG run on the sensory nerves, so maybe something there will show up. This may also be one of the factors in his neuropathy diagnosis.
I'm posting on a lot of other websites, asking these questions, but I would sure like a doctor to give me some insights. This waiting around stuff is for the birds! ;o)
(1) My B12 level is 383, which although the lab report said is in normal range, from everything I'm reading, this level may be suspect.
(2) The Chief of Neuro that I spoke with noticed that the EMG run on me was done totally on the motor nerves and none of the sensory, which he says is where the problem lies. Plus, the EMG was done exactly at the 1 month mark of the Sx beginning, and he said if it's a virus causing the problems, then it may not have been strong enough to cause a reaction in the EMG. He wants me to have another EMG run on the sensory nerves, so maybe something there will show up. This may also be one of the factors in his neuropathy diagnosis.
I'm posting on a lot of other websites, asking these questions, but I would sure like a doctor to give me some insights. This waiting around stuff is for the birds! ;o)
If they say it's not ms, then it's not ms. MS should never start out being 'ruled in' except as in a "OK, this patient clears on all other aspects of tests but on these tests she doesn't and now that we've done that, we can say with a degree of certainty this patient probably has MS." They should be ruling less nefarious things out first. Like vitamin defeciency's, emotional health issues, thyroid, that sort of thing.
My doc wanted me to get an MRI w/contrast right away. I balked and preferred to try a vitamin approach instead ( it's cheaper approach for one ). Although no input or output of my diet ( food, vitamins, liquids ) has affected my symptoms even nominally, except probably raising my b counts, I'd rather do this than an MRI any day! Since my own symptoms continue to get worse I'll probably stop fighting the doc about the test but rationalzing putting it off unti I see the neuro again. Let a specialist decide if it's necessary or not.
One thing though: you are paying them to produce the results of any tests you agree to. A truly competent and good doctor will take the time to answer all of your questions and read over the reports WITH YOU. If they try to be dismissive, risk being labeled 'combative' if necessary so they understand you aren't a passive patient and you *expect* them to find a language they can explain clearly to you what they are saying and what the reports are saying. If you have doctors not willing to do this or seem perturbed by it, dump them and find new ones immediately.
My doc wanted me to get an MRI w/contrast right away. I balked and preferred to try a vitamin approach instead ( it's cheaper approach for one ). Although no input or output of my diet ( food, vitamins, liquids ) has affected my symptoms even nominally, except probably raising my b counts, I'd rather do this than an MRI any day! Since my own symptoms continue to get worse I'll probably stop fighting the doc about the test but rationalzing putting it off unti I see the neuro again. Let a specialist decide if it's necessary or not.
One thing though: you are paying them to produce the results of any tests you agree to. A truly competent and good doctor will take the time to answer all of your questions and read over the reports WITH YOU. If they try to be dismissive, risk being labeled 'combative' if necessary so they understand you aren't a passive patient and you *expect* them to find a language they can explain clearly to you what they are saying and what the reports are saying. If you have doctors not willing to do this or seem perturbed by it, dump them and find new ones immediately.
I'm sorry... one very last comment.
I had bloodwork done at the beginning of this process, and everything came back normal (B12, thyroid, ANA screen, ANA Titer, and hematology).
Looking forward to a response!
Karen
I had bloodwork done at the beginning of this process, and everything came back normal (B12, thyroid, ANA screen, ANA Titer, and hematology).
Looking forward to a response!
Karen
Sorry, I forgot a few things (easy to do when they limit you to 1600 characters in a question)!
The other reason the Chief of Neurology at the university hospital says it's not MS is that the LP readings could point to any number of things. He has treated lots of MS patients and my case just doesn't present to him as MS. With those readings, there is definitely something wrong with me and we need to figure out what it is.
I asked about the permanency of my current symptoms which have been going on for 10 weeks and he thinks it's definitely treatable. For what it's worth, he also thinks it could be a plasma issue.
He really went out on a limb here... he could have said, "Without examining you, I can't give you a diagnosis." But rather, when I asked where I should go for a second opinion, he said, "I just gave you one."
The other reason the Chief of Neurology at the university hospital says it's not MS is that the LP readings could point to any number of things. He has treated lots of MS patients and my case just doesn't present to him as MS. With those readings, there is definitely something wrong with me and we need to figure out what it is.
I asked about the permanency of my current symptoms which have been going on for 10 weeks and he thinks it's definitely treatable. For what it's worth, he also thinks it could be a plasma issue.
He really went out on a limb here... he could have said, "Without examining you, I can't give you a diagnosis." But rather, when I asked where I should go for a second opinion, he said, "I just gave you one."
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