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Nerurolgists Conclusion; Premature?
Due to an MRI that has remained unchanged over the past 2 years, my neuro has ruled out MS (he originally suspected progressive MS due to my symptoms that have been ongoing for many years). The original MRI shows approx. 15 very small white matter lesions that are non-specific. About half of them are between 3-4 mm in size, and the rest, smaller. An MRI four years (done because similar symptoms) previous to this one, showed no lesions. This dr. is saying that the lesions are simply due to 'old age' (I am 48) and that they have nothing to do with my symptoms...essentially, that at my age, 15 small white lesions are perfectly normal.
This dr. refused to order a lumbar puncture or evoked potentials simply saying that he didn't think it would help with a diagnosis. He told me that he doesn't see any point in continuing in seeking a dx, as he simply does not know what I have. He does acknowledge though that 'there is definitely a neurological problem' and that my clinical symptoms are increasing. His examinations found; bilateral babinski sign, progressively increasing spasticity in all limbs, very brisk reflexes (worse in R. leg), areas of decreased sensation, decreased vibrational sense, balance problems.
Other symptoms that have been steadily progressing over the past 3 years include; numbness/tingling of extremities that comes and goes, near permanent numbness in R. foot toes and Left buttock area. "Sock" sensation over right foot & ankle area, "pressure" sensation on L side of upper back...often feels like something crawling up me and/or squeezing, Bladder urgency (up several times during night) and a few instances of retention, R. side facial numbness and tiny spasm around eye, R. side tinnitis that has been present for about 8 years now, intermittent electric shock-like (snapping) sensations that shoot down to hand in side of neck when bending, a feeling of 'stiffness' in ankles, legs, hands and forearms. (getting worse), It gets difficult to walk particularly following exercise or a hot shower. Am having increasing difficulty opening packages and such with hands as they are slowly weakening and stiffening, Extreme fatigue that hits late afternoon and renders my mental faculties almost non-existent, memory problems and confusion that come and go (usually related to fatigue levels), blurred vision when exercising, also patterns 'move' when I look at them, intermittent vibrating vision, dizziness and balance issues (few episodes of rotational vertigo that cause vomiting and inability to walk straight), muscle weakness and a sense of 'heaviness' that comes and goes ( in legs and arms), painful spasms in feet, legs, hips and more recently in hands, tiny muscle twitches most often in back and torso when relaxed, heart palpitations after meals, intermittent swallowing reflex being too brisk (often choke on liquids and when sleeping, stabbing, fleeting pin-prick sensations on R. side of face, hot/cold/wet sensations all over body (mostly on legs), the 'hot' feeling is getting worse, lasting longger and verging on painful, R. hand tremor when arm muscle is engaged, intermittent extreme itching of armpits, palms and bottoms of feet, no rash whatsoever.
All symptoms worsen after a hot shower or when exercising (which is at a bare minimum these days), I always have to lie down after showering and blow drying hair. My arms often get weak and heavy in the shower as I"m washing hair...must put them down to rest. I recently cut my hair short as my arms were getting too weak as well to comb it out afterwards. It would feel as though I'd lifted weights for hours and exhausted my arm muscles...same happens in legs.
I had increased energy this past weekend and did some cleaning and lifting of boxes and a few hours later, could hardly walk for the stiffness in my legs, lower back and hips. It took several baclofen to quell the pain and ease the tightness even a little.
Other test done: An EMG, which was normal (dr. said this indicates my problem is central rather than peripheral), Lyme test - Neg, ANA - once positive and now negative, mildly low platelet count (for over 10 years now), B-12 - normal, Spinal and cervical MRI - normal.
Needless to say, I was shocked and very upset when this Dr. dismissed me as a patient, ruling out MS, but providing no suggestion as to what this could be, particularly because he refused to perform any further testing. This is the third neurologist I"ve seen over the past three years. The first two denied there was any neurological problem at all, so perhaps I should at least be thankful that this guy is acknowledging an abnormal neuro exam.
He told me to see my GP if I wanted to pursue a diagnosis with another neurologist but he simply didn't think he was in a position to help me. In Canada, there's a shortage of specialists and I will now be waiting up to a year to see a new neuro...with again, no guarantees that he/she will have the specialized knowledge I'm seeking. (I've put in a request though to see one who specializes in MS). This waiting and wondering is the worse part. Hard to plan for the future when I simply have no idea what to expect.
I'm wondering if this still could be progressive MS, despite the fact that the MRI has remained unchanged for two years straight and despite the fact that here are no spinal lesions...? Would appreciate any help any of you could offer. Thanks in advance! What other possibilities exist that are of a central nature and that would cause all of these symptoms...in particular the worsening of symptoms with heat?
This dr. refused to order a lumbar puncture or evoked potentials simply saying that he didn't think it would help with a diagnosis. He told me that he doesn't see any point in continuing in seeking a dx, as he simply does not know what I have. He does acknowledge though that 'there is definitely a neurological problem' and that my clinical symptoms are increasing. His examinations found; bilateral babinski sign, progressively increasing spasticity in all limbs, very brisk reflexes (worse in R. leg), areas of decreased sensation, decreased vibrational sense, balance problems.
Other symptoms that have been steadily progressing over the past 3 years include; numbness/tingling of extremities that comes and goes, near permanent numbness in R. foot toes and Left buttock area. "Sock" sensation over right foot & ankle area, "pressure" sensation on L side of upper back...often feels like something crawling up me and/or squeezing, Bladder urgency (up several times during night) and a few instances of retention, R. side facial numbness and tiny spasm around eye, R. side tinnitis that has been present for about 8 years now, intermittent electric shock-like (snapping) sensations that shoot down to hand in side of neck when bending, a feeling of 'stiffness' in ankles, legs, hands and forearms. (getting worse), It gets difficult to walk particularly following exercise or a hot shower. Am having increasing difficulty opening packages and such with hands as they are slowly weakening and stiffening, Extreme fatigue that hits late afternoon and renders my mental faculties almost non-existent, memory problems and confusion that come and go (usually related to fatigue levels), blurred vision when exercising, also patterns 'move' when I look at them, intermittent vibrating vision, dizziness and balance issues (few episodes of rotational vertigo that cause vomiting and inability to walk straight), muscle weakness and a sense of 'heaviness' that comes and goes ( in legs and arms), painful spasms in feet, legs, hips and more recently in hands, tiny muscle twitches most often in back and torso when relaxed, heart palpitations after meals, intermittent swallowing reflex being too brisk (often choke on liquids and when sleeping, stabbing, fleeting pin-prick sensations on R. side of face, hot/cold/wet sensations all over body (mostly on legs), the 'hot' feeling is getting worse, lasting longger and verging on painful, R. hand tremor when arm muscle is engaged, intermittent extreme itching of armpits, palms and bottoms of feet, no rash whatsoever.
All symptoms worsen after a hot shower or when exercising (which is at a bare minimum these days), I always have to lie down after showering and blow drying hair. My arms often get weak and heavy in the shower as I"m washing hair...must put them down to rest. I recently cut my hair short as my arms were getting too weak as well to comb it out afterwards. It would feel as though I'd lifted weights for hours and exhausted my arm muscles...same happens in legs.
I had increased energy this past weekend and did some cleaning and lifting of boxes and a few hours later, could hardly walk for the stiffness in my legs, lower back and hips. It took several baclofen to quell the pain and ease the tightness even a little.
Other test done: An EMG, which was normal (dr. said this indicates my problem is central rather than peripheral), Lyme test - Neg, ANA - once positive and now negative, mildly low platelet count (for over 10 years now), B-12 - normal, Spinal and cervical MRI - normal.
Needless to say, I was shocked and very upset when this Dr. dismissed me as a patient, ruling out MS, but providing no suggestion as to what this could be, particularly because he refused to perform any further testing. This is the third neurologist I"ve seen over the past three years. The first two denied there was any neurological problem at all, so perhaps I should at least be thankful that this guy is acknowledging an abnormal neuro exam.
He told me to see my GP if I wanted to pursue a diagnosis with another neurologist but he simply didn't think he was in a position to help me. In Canada, there's a shortage of specialists and I will now be waiting up to a year to see a new neuro...with again, no guarantees that he/she will have the specialized knowledge I'm seeking. (I've put in a request though to see one who specializes in MS). This waiting and wondering is the worse part. Hard to plan for the future when I simply have no idea what to expect.
I'm wondering if this still could be progressive MS, despite the fact that the MRI has remained unchanged for two years straight and despite the fact that here are no spinal lesions...? Would appreciate any help any of you could offer. Thanks in advance! What other possibilities exist that are of a central nature and that would cause all of these symptoms...in particular the worsening of symptoms with heat?
Hello Supermum, wow....more wonderful advice. Interestingly enough, prior to the overt neurological symptoms starting again, back in 2009, I had a few months of migrating joint pain that would come and go in a very mysterious way and I did see a rheumatologist for an assessment. My ANA at that time was positive, but I guess for some reason it did not suggest lupus or anything else in particular. It was she who noticed my very brisk reflexes and voiced her suspicion of MS when she heard I was also having numbness and tingling.
Now that I have so much spasticity, my joints sometimes hurt, but I can tell that it's more from having my muscles so rigid and pulling in different directions....I'm trying to remember if the joint pain back then was similar and can't help but wonder if it was something different or perhaps i was getting muscle stiffness back then too, and simply didn't realize it.
I know when the ENA came back positive, my GP was baffled. He said it didn't make sense because although the results said positive for ENA, the subtests for specific autoantibodies all came back negative...he just kind of dismissed it and I've never heard anything more about it. I have a new GP now, so I'm thinking it would be wise to bring it up again.
I agree, not helpful at all that this neurologist didn't at least make the referral himself to a colleague that he felt might be able to help...it likely would have cut down on my wait time considerably. from my vantage point that just seemed mean on his part. He did admit that he was not himself an MS specialist, and he also mentioned that in Calgary, most of the MS specialists are at the MS clinic, and you can't get in there unless you are actually diagnosed with MS. Crazy.
Thank you so much supermom for your advice and support.....big hugs & well wishes back to you!!!
Now that I have so much spasticity, my joints sometimes hurt, but I can tell that it's more from having my muscles so rigid and pulling in different directions....I'm trying to remember if the joint pain back then was similar and can't help but wonder if it was something different or perhaps i was getting muscle stiffness back then too, and simply didn't realize it.
I know when the ENA came back positive, my GP was baffled. He said it didn't make sense because although the results said positive for ENA, the subtests for specific autoantibodies all came back negative...he just kind of dismissed it and I've never heard anything more about it. I have a new GP now, so I'm thinking it would be wise to bring it up again.
I agree, not helpful at all that this neurologist didn't at least make the referral himself to a colleague that he felt might be able to help...it likely would have cut down on my wait time considerably. from my vantage point that just seemed mean on his part. He did admit that he was not himself an MS specialist, and he also mentioned that in Calgary, most of the MS specialists are at the MS clinic, and you can't get in there unless you are actually diagnosed with MS. Crazy.
Thank you so much supermom for your advice and support.....big hugs & well wishes back to you!!!
sllowe...thank you so much for your response. It's amazing how much it helps to have others back up and support my own opinions that have been rattling around in my head for so long.....haha...it helps me to feel sane!
I think when he saw me a few times and noticed the progressive increase in spasticity and briskness of reflexes, This Dr. was pretty convinced that what I had was primary progressive MS. He just kept telling me that what he thinks I have is not something that is treatable, so I should be prepared for that...but also added that 'til we knew for sure, he didn't want to put a label on it.
When he ordered my most recent MRI, He had told me that if it showed even one more lesion in another brain area or in the spine, he'd be diagnosing me with ms. This is why it really surprised me when the MRI came up unchanegd and he was suddenly labelling my original MRI as 'normal' saying the lesions were just age related spots and that if there was no change, then it simply "could not" be MS. Obviously, prior to seeing that it had not changed, he had regarded those lesions as being somewhat suspicious.
Thank you for your clarification though that an unchanged MRI is not in itself proof that one does not have MS.
I actually pulled out a copy of the McDonald criteria for diagnosing Primary progressive MS to point out to him that in cases where there were 9 or more lesions but no dissemination in space or time proven, evoked potentials or a lumbar puncture often provide the missing puzzle piece...but he just kept saying, "no, I don't think that will help."
So in short, as you've said, ultimately I'll be much better off seeing a new neurologist. I"m on a waiting list and am told it could take up to a year...terrible wait times for specialists here in Canada. I am learning the art of patience for sure...as well as lots of lessons about self love and trusting my own instincts :)
I think when he saw me a few times and noticed the progressive increase in spasticity and briskness of reflexes, This Dr. was pretty convinced that what I had was primary progressive MS. He just kept telling me that what he thinks I have is not something that is treatable, so I should be prepared for that...but also added that 'til we knew for sure, he didn't want to put a label on it.
When he ordered my most recent MRI, He had told me that if it showed even one more lesion in another brain area or in the spine, he'd be diagnosing me with ms. This is why it really surprised me when the MRI came up unchanegd and he was suddenly labelling my original MRI as 'normal' saying the lesions were just age related spots and that if there was no change, then it simply "could not" be MS. Obviously, prior to seeing that it had not changed, he had regarded those lesions as being somewhat suspicious.
Thank you for your clarification though that an unchanged MRI is not in itself proof that one does not have MS.
I actually pulled out a copy of the McDonald criteria for diagnosing Primary progressive MS to point out to him that in cases where there were 9 or more lesions but no dissemination in space or time proven, evoked potentials or a lumbar puncture often provide the missing puzzle piece...but he just kept saying, "no, I don't think that will help."
So in short, as you've said, ultimately I'll be much better off seeing a new neurologist. I"m on a waiting list and am told it could take up to a year...terrible wait times for specialists here in Canada. I am learning the art of patience for sure...as well as lots of lessons about self love and trusting my own instincts :)
COMMUNITY LEADER
Hi there,
I'm actually thinking you probably need to see a rhuemotologist, whilst you wait to find/see another neuro. I had a quick look at some of your past posts and in one of them you mentioned having both positive ANA and ENA. These results are not related to MS at all but they are commonly seen in SLE (lupus), and to some extent also Connective tissue disease, and sjogrens syndrome.
From my understanding of this, you can get a positive ANA on its own and it not mean anything (false positive) but you 'cant' have a false positive ENA, "It detects autoantibodies, which are molecules produced when the immune system attacks healthy tissue"
(http://www.brighthub.com/science/medical/articles/98969.aspx) So together having both positive ANA and ENA it is a strong indicator of an autoimmune disease and should (imho) be fully investigated!!
As for the neuro that didn't automatically dismiss you, i'm not impressed with his change in attitude though it may not be his domain, he could of refered you on at least. hmmmm some of the things said are not consistent with any of the research. Unless you have a medical condition to explain those brain lesions eg hypertension, diabetes etc it is totally 'abnormal' to have multiple brain lesions if your not yet in your 60's or older! Another point is that most research indicates these 'normal' age related lesions are typically silent, so dont cause sx's anyway and considering your not over 60 and are having sx's, the logical conclusion is that they are not normal!
If i was you i'd have a chat with the wonderful people in the Lupus community, they maybe of some help and it can't hurt to find out more about it.
Hugs............JJ
I'm actually thinking you probably need to see a rhuemotologist, whilst you wait to find/see another neuro. I had a quick look at some of your past posts and in one of them you mentioned having both positive ANA and ENA. These results are not related to MS at all but they are commonly seen in SLE (lupus), and to some extent also Connective tissue disease, and sjogrens syndrome.
From my understanding of this, you can get a positive ANA on its own and it not mean anything (false positive) but you 'cant' have a false positive ENA, "It detects autoantibodies, which are molecules produced when the immune system attacks healthy tissue"
(http://www.brighthub.com/science/medical/articles/98969.aspx) So together having both positive ANA and ENA it is a strong indicator of an autoimmune disease and should (imho) be fully investigated!!
As for the neuro that didn't automatically dismiss you, i'm not impressed with his change in attitude though it may not be his domain, he could of refered you on at least. hmmmm some of the things said are not consistent with any of the research. Unless you have a medical condition to explain those brain lesions eg hypertension, diabetes etc it is totally 'abnormal' to have multiple brain lesions if your not yet in your 60's or older! Another point is that most research indicates these 'normal' age related lesions are typically silent, so dont cause sx's anyway and considering your not over 60 and are having sx's, the logical conclusion is that they are not normal!
If i was you i'd have a chat with the wonderful people in the Lupus community, they maybe of some help and it can't hurt to find out more about it.
Hugs............JJ
Hi Maramor,
If your first sentence...."doctor ruled out MS because of unchanged MRIs" is the only reason the doctor said he/she is not dx'ing you, run to another doctor.
I say this because if this is so, then you are not in good care. If the doctor has other reasons, then combined, maybe there is some other reasoning. I just don't know.
But, it's simply not-so that MSers must have progressing lesion load. Even without a disease modifier, not all MSers experience increase in lesions.
You can also experience increase in symptoms w/out additional lesions where MS is concerned. Many of us experience this.
You must be so frustrated. Remind us, have you been to any other docs for a 2nd opinion?
-shell
If your first sentence...."doctor ruled out MS because of unchanged MRIs" is the only reason the doctor said he/she is not dx'ing you, run to another doctor.
I say this because if this is so, then you are not in good care. If the doctor has other reasons, then combined, maybe there is some other reasoning. I just don't know.
But, it's simply not-so that MSers must have progressing lesion load. Even without a disease modifier, not all MSers experience increase in lesions.
You can also experience increase in symptoms w/out additional lesions where MS is concerned. Many of us experience this.
You must be so frustrated. Remind us, have you been to any other docs for a 2nd opinion?
-shell
Thanks to both of you for your comments. Ricobord, I will print this off and present it to my GP. Perhaps these are tests she can order, unlike some of the other tests that must be ordered by a neurologist.
I initially had a year of neurological symptoms (back in 2005), when the tinnitis started, (dizziness, mild numbness and tingling in R. leg, hands and one side of face). These symptoms then pretty much disappeared for about 4 years, only to return with a vengeance when I embarked upon a really intensive work-out program....I'm wondering if that would also be consistent with Lyme, or if it would present in more of a continuous manner..? Although, I'm guessing with all of these things there are likely no hard and fast rules to precisely how they will present or evolve.
I so appreciate these suggestions ...thank you so much!!!
I initially had a year of neurological symptoms (back in 2005), when the tinnitis started, (dizziness, mild numbness and tingling in R. leg, hands and one side of face). These symptoms then pretty much disappeared for about 4 years, only to return with a vengeance when I embarked upon a really intensive work-out program....I'm wondering if that would also be consistent with Lyme, or if it would present in more of a continuous manner..? Although, I'm guessing with all of these things there are likely no hard and fast rules to precisely how they will present or evolve.
I so appreciate these suggestions ...thank you so much!!!
http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php#a1
A recent acknowledgement by the Canadian Health service on the limits of a lyme testing. You might show your doctor a copy of this to convince him to test you further.
There is another test that is often helpful in diagnosing Lyme : a CD57 test. This immune cell is known to be suppressed only by HIV and Lyme. Nearly all late stage Lyme patients are low in it.
I hope you get an answer soon!
I am so sorry you are going through this. you have a lot of symptoms.
Every single symptom you described could be caused by Lyme Disease. I was 45 when my neuro ordered a brain mri and we found that I have about 20 of those small brain lesions. No, they are not normal. I went through a full MS work up and three neuros said they didn't believe I had MS. While my Lyme mimicked MS, there were too many things that just weren't consistent with MS. (Note: None of those 3 thought I had Lyme because I tested "negative" twice.)
The antibody testing for Lyme is highly flawed and controversial. Between 30-50% of Lyme patients test false negative on the CDC surveillance testing. The CDC has finally recently stated that you cannot exclude lyme with a negative blood test. Of course this doesn't help a doctor who doesn't know how to diagnose it without a positive.
You will need to see a doctor familiar with Lyme disease. We patients call them LLMDs, Lyme Literate Medical Doctors.
Many Canadians get tested at IGeneX, which does more advanced testing for tick borne diseases. You might ask your doctor if he will order a Western Blot at IgeneX for you to see if it shows any sign of Lyme.
www.canlyme.org might be helpful for you.
So might a local Lyme support group.
www.ilads.org has lots of good info, too.
Here is a short article you might relate to.
http://www.cbc.ca/news/canada/ottawa/story/2012/07/05/ottawa-lyme-disease-follow-misdiagnosis.html
Every single symptom you described could be caused by Lyme Disease. I was 45 when my neuro ordered a brain mri and we found that I have about 20 of those small brain lesions. No, they are not normal. I went through a full MS work up and three neuros said they didn't believe I had MS. While my Lyme mimicked MS, there were too many things that just weren't consistent with MS. (Note: None of those 3 thought I had Lyme because I tested "negative" twice.)
The antibody testing for Lyme is highly flawed and controversial. Between 30-50% of Lyme patients test false negative on the CDC surveillance testing. The CDC has finally recently stated that you cannot exclude lyme with a negative blood test. Of course this doesn't help a doctor who doesn't know how to diagnose it without a positive.
You will need to see a doctor familiar with Lyme disease. We patients call them LLMDs, Lyme Literate Medical Doctors.
Many Canadians get tested at IGeneX, which does more advanced testing for tick borne diseases. You might ask your doctor if he will order a Western Blot at IgeneX for you to see if it shows any sign of Lyme.
www.canlyme.org might be helpful for you.
So might a local Lyme support group.
www.ilads.org has lots of good info, too.
Here is a short article you might relate to.
http://www.cbc.ca/news/canada/ottawa/story/2012/07/05/ottawa-lyme-disease-follow-misdiagnosis.html
Ms usually starts with one side and you speak of bilateral
Although I have to discount the "old age" reason , my 2nd neuro tried that on me! Good luck and keep us posted, you are most welcome here
Although I have to discount the "old age" reason , my 2nd neuro tried that on me! Good luck and keep us posted, you are most welcome here
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