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Where's my diagnosis?
It's been a frustrating process to try to get a diagnosis of at least SOMEthing. Every forum and webpage I can find tells me that a diagnosis of MS looks very different in everyone, and nobody, of course, has had the same set of symptoms or test results as I.
Eighteen months ago I had problems with a headache that persisted for about 4 weeks with intermittent periods of severe vertigo. (The room would start spinning and I felt ridiculously drunk despite not having anything to drink.) My PCP sent me for an MRI to rule out migraines and other problems (e.g. tumor). The results showed several small lesions in areas known for being indicative of MS. I was referred to a neurologist who sent me for an MRI with contrast. The results were the same, but with no family history or other neurological disruptions he said it likely wasn't MS, but a follow-up MRI in 6 months was recommended. I did not go for the follow-up MRI, as I was in my last year of grad school at that point and was symptom-free, then moved back to my home state.
Approximately 6 weeks ago (on my 30th birthday) I woke up with numbness on the ventral (front) side of my left leg from my knee to my ankle. Within a week and a half it spread to my foot and then toes. No pain, no pins and needles. My new PCP recommended I go to a neurologist again. The MRI of my brain revealed no evidence of the old lesions and the formation of new lesions in areas also suspect in MS. The c-spine MRI revealed a lesion as well. I went for a lumbar puncture in the office, but the PA kept hitting my vertebrae and decided to do a fluoroscope LP. This attempt for a spinal tap was also unsuccessful because my PTT was twice the threshold (all other clotting factors were normal). Repeat tests on other machines revealed the same result, so the radiologist would not perform the LP. I've never had a problem before that's been noted with blood clotting and have had gone for a few surgeries on a knee injury and broken nose with no problems.
At the first appointment with this neurologist I brought up other symptoms I have had in the past but disregarded, including numbness 5 years ago in my last 3 fingers of my right hand that lasted about 6 months (I disregarded this as being at the computer too much and perhaps a pinched nerve in my neck) and a 4 week period 7 months ago of having a blind spot in my right eye that the ophthamologist did not have an explanation for. The neurologist said if there was no diagnosis of optic neuritis it probably isn't relevant and that people have symptoms that don't always mean anything.
He sent me for more bloodwork after the last failed LP. To date, the blood work has ruled out: Lyme's disease, hypothyroidism, diabetes, neurosyphilis, & my WBC count has been normal. I am still waiting for the lupus test results, but the symptoms listed do not seem to correspond with my symptoms. Despite not having a family history of MS, I really feel that the listed symptoms correspond most with my symptoms. My father is pushing for me to go to a new neurologist, but this guy is very highly regarded in this state (and why I can't get an appointment with him for another 2 weeks) and I do not want to change just because he isn't giving me the diagnosis I think it should be without the LP results- after all I am not a doctor.
Any advice or things I haven't thought about? Am I just getting stuck in thinking this is MS when I shouldn't be as worried? Should I not be pushing for treatment to start ASAP without the LP?
Eighteen months ago I had problems with a headache that persisted for about 4 weeks with intermittent periods of severe vertigo. (The room would start spinning and I felt ridiculously drunk despite not having anything to drink.) My PCP sent me for an MRI to rule out migraines and other problems (e.g. tumor). The results showed several small lesions in areas known for being indicative of MS. I was referred to a neurologist who sent me for an MRI with contrast. The results were the same, but with no family history or other neurological disruptions he said it likely wasn't MS, but a follow-up MRI in 6 months was recommended. I did not go for the follow-up MRI, as I was in my last year of grad school at that point and was symptom-free, then moved back to my home state.
Approximately 6 weeks ago (on my 30th birthday) I woke up with numbness on the ventral (front) side of my left leg from my knee to my ankle. Within a week and a half it spread to my foot and then toes. No pain, no pins and needles. My new PCP recommended I go to a neurologist again. The MRI of my brain revealed no evidence of the old lesions and the formation of new lesions in areas also suspect in MS. The c-spine MRI revealed a lesion as well. I went for a lumbar puncture in the office, but the PA kept hitting my vertebrae and decided to do a fluoroscope LP. This attempt for a spinal tap was also unsuccessful because my PTT was twice the threshold (all other clotting factors were normal). Repeat tests on other machines revealed the same result, so the radiologist would not perform the LP. I've never had a problem before that's been noted with blood clotting and have had gone for a few surgeries on a knee injury and broken nose with no problems.
At the first appointment with this neurologist I brought up other symptoms I have had in the past but disregarded, including numbness 5 years ago in my last 3 fingers of my right hand that lasted about 6 months (I disregarded this as being at the computer too much and perhaps a pinched nerve in my neck) and a 4 week period 7 months ago of having a blind spot in my right eye that the ophthamologist did not have an explanation for. The neurologist said if there was no diagnosis of optic neuritis it probably isn't relevant and that people have symptoms that don't always mean anything.
He sent me for more bloodwork after the last failed LP. To date, the blood work has ruled out: Lyme's disease, hypothyroidism, diabetes, neurosyphilis, & my WBC count has been normal. I am still waiting for the lupus test results, but the symptoms listed do not seem to correspond with my symptoms. Despite not having a family history of MS, I really feel that the listed symptoms correspond most with my symptoms. My father is pushing for me to go to a new neurologist, but this guy is very highly regarded in this state (and why I can't get an appointment with him for another 2 weeks) and I do not want to change just because he isn't giving me the diagnosis I think it should be without the LP results- after all I am not a doctor.
Any advice or things I haven't thought about? Am I just getting stuck in thinking this is MS when I shouldn't be as worried? Should I not be pushing for treatment to start ASAP without the LP?
I just wanted to update those of you who might be curious. I got a phone call today from my neuro's RN- apparently my lupus test is negative, but the lupus anticoagulant was high, along with my sedimentation rate. The PTT was normal, though, so they are proceeding with the LP next Tuesday (the 4th). The neuro and his nurse didn't know what to make of the lupus anticoagulant, so they scheduled a hematology appointment for me at some other group.
I took to google and tried to find out what I could about the lupus anticoagulant. I (as most of you might already be thinking) found a lot of info on Hughes Syndrome. Now I am really, really confused. Basically, what I find is saying that the lesions seen in Hughes Syndrome are typically only (or are exclusively) found in the brain and not the spinal cord. But, at the same time I have suffered from headaches all my life. No skin disorders, no embolisms, no memory problems. Just the MS-like symptoms. I'm afraid to take aspirin before the LP but if it is Hughes Syndrome, I'd be best off taking aspirin to not have a stroke. I'm starting to make myself paranoid. :-/
I go back to the neuro on the 18th at 11:15am, then off to the hematologist that afternoon at 1:30pm. Though only two and a half weeks away, it feels like forever from now.
I took to google and tried to find out what I could about the lupus anticoagulant. I (as most of you might already be thinking) found a lot of info on Hughes Syndrome. Now I am really, really confused. Basically, what I find is saying that the lesions seen in Hughes Syndrome are typically only (or are exclusively) found in the brain and not the spinal cord. But, at the same time I have suffered from headaches all my life. No skin disorders, no embolisms, no memory problems. Just the MS-like symptoms. I'm afraid to take aspirin before the LP but if it is Hughes Syndrome, I'd be best off taking aspirin to not have a stroke. I'm starting to make myself paranoid. :-/
I go back to the neuro on the 18th at 11:15am, then off to the hematologist that afternoon at 1:30pm. Though only two and a half weeks away, it feels like forever from now.
Hi Trish, and welcome to the forum,
You have been given the good advice here. I just wanted to back that up, and say hello. You absolutely should stay w/the Dr you are seeing currently at least for now. Moki is right, 2 weeks is not long in the Neuro field. This Dr is running a lot of tests that are consistent with what should be run.
If you decide to move on (and a good Neuro may ask you to get a 2nd opinion anyway), they you will have all of the test results to bring with you.
As Heather does, I too, have had a couple flags on the PT times, and some other factors. I actually searched for answers, questioned the Drs, until I couldn't anymore because I thought I had blood flow issues and that the Drs were wrong with an MS diagnosis.
I know it is hard to have patience during this time, but you absolutley have to find a way to do so, it's best for your sanity and it will be best for the Dr have to all the facts in front of them, and have covered all the bases before diagnosing something like this.
I wish you the best, and sure hope you feel better soon. Let us know how it goes.
Be well,
SL
You have been given the good advice here. I just wanted to back that up, and say hello. You absolutely should stay w/the Dr you are seeing currently at least for now. Moki is right, 2 weeks is not long in the Neuro field. This Dr is running a lot of tests that are consistent with what should be run.
If you decide to move on (and a good Neuro may ask you to get a 2nd opinion anyway), they you will have all of the test results to bring with you.
As Heather does, I too, have had a couple flags on the PT times, and some other factors. I actually searched for answers, questioned the Drs, until I couldn't anymore because I thought I had blood flow issues and that the Drs were wrong with an MS diagnosis.
I know it is hard to have patience during this time, but you absolutley have to find a way to do so, it's best for your sanity and it will be best for the Dr have to all the facts in front of them, and have covered all the bases before diagnosing something like this.
I wish you the best, and sure hope you feel better soon. Let us know how it goes.
Be well,
SL
First of all i would like to thank you for supporting other people and i would like to aske you if any person who have MS - like symptoms like my case and all three neurologists i had seen ruled out the MS based on the blood work and other tests like EEG,CSF,EP which all were normal except the multiple lesions in my brain. Do you advise me to see another neurologist ? Do you think that a person with multiple lesions mean that he have an MS ? Why the neurologists can diagnose some MS cases easily and other cases not ? Can the neurologists start treating the patient depending only on the lesions found in the brain and the other tests were normal ? Thank you again.
My Pro-Time is off and I do have problems with frequent bruising on my arms. I do have a little trouble if I cut myself; getting the bleeding to stop promptly, but it has not affected any surgery's that I have had, nor stopped anyone from doing an LP.
You know what worries me the most about your post? Your statement that you not only have lesions in your brain, but your spinal cord. This is almost always indicative of MS, even without the LP.
I have been diagnosed with MS for 12 years. I was diagnosed without an LP. I didn't have the LP for 5 years after my intial diagnosis. The LP DID confirm the diagnosis as did my physical symptoms, that relapsed and remitted.
I was told that if lesions appear in the brain and the spine, you can then rule out lesions from migraines. I see that you have been tested for other disorders and are awaiting the results of the Lupus. My son-in-law has Lupus and it's true, some of our symptoms are very similar. He does NOT show any lesions on MRI, though. But he has a very, very bad case of Lupus.
Having MS "in the family history," is of NO consequence in diagnosing MS. None whatsoever. So your doctor is full of turkey feather's when he says that.
I wish there was some way to obtain a sample of spinal fluid in your case. If you showed the typical "banding," I feel sure that your neurologist would have you started on some of the MS injectable therapy's as soon as possible.
I rarely, if ever, come right out and say I "think this is MS." I do hazard a guess in this case and "I" feel that you are classic for something like MS or MS itself.
Further investigation is imperative. If this is MS, you need to get started on therapy to reduce your attacks and posthaste. MS is always active, whether you are having symptoms or not....so of course, damage is being done, even when we are not aware of it.
My evoked potentials came back with only slight abnormalities. I have 7 lesions in the brain and one in the spinal cord. I do not put much stock in the EVP's at all, as far as a diagnostic tool. Others may disagree. I have only had Optic Neuritis twice, thank god; and no damage or lesions show up on the Optic Nerve, despite these two attacks. I also did NOT have my MRI when I was in the middle of the ON, but was put on a treatment of Solumedrol. Optic Neuritis is one of the really dangerous things about MS. Playing around with your eyesight is a big gamble and not one I am willing to take.
I am anxious to see what your neurology appointment turns up. Please keep us posted.
Heather
I have been diagnosed with MS for 12 years. I was diagnosed without an LP. I didn't have the LP for 5 years after my intial diagnosis. The LP DID confirm the diagnosis as did my physical symptoms, that relapsed and remitted.
I was told that if lesions appear in the brain and the spine, you can then rule out lesions from migraines. I see that you have been tested for other disorders and are awaiting the results of the Lupus. My son-in-law has Lupus and it's true, some of our symptoms are very similar. He does NOT show any lesions on MRI, though. But he has a very, very bad case of Lupus.
Having MS "in the family history," is of NO consequence in diagnosing MS. None whatsoever. So your doctor is full of turkey feather's when he says that.
I wish there was some way to obtain a sample of spinal fluid in your case. If you showed the typical "banding," I feel sure that your neurologist would have you started on some of the MS injectable therapy's as soon as possible.
I rarely, if ever, come right out and say I "think this is MS." I do hazard a guess in this case and "I" feel that you are classic for something like MS or MS itself.
Further investigation is imperative. If this is MS, you need to get started on therapy to reduce your attacks and posthaste. MS is always active, whether you are having symptoms or not....so of course, damage is being done, even when we are not aware of it.
My evoked potentials came back with only slight abnormalities. I have 7 lesions in the brain and one in the spinal cord. I do not put much stock in the EVP's at all, as far as a diagnostic tool. Others may disagree. I have only had Optic Neuritis twice, thank god; and no damage or lesions show up on the Optic Nerve, despite these two attacks. I also did NOT have my MRI when I was in the middle of the ON, but was put on a treatment of Solumedrol. Optic Neuritis is one of the really dangerous things about MS. Playing around with your eyesight is a big gamble and not one I am willing to take.
I am anxious to see what your neurology appointment turns up. Please keep us posted.
Heather
" but with no family history or other neurological disruptions he said it likely wasn't ms"
you do not have to have a history of any neurologic illness of family member for this to be ms.
and IF this is ms, keep in mind with the onset of sensory symptoms, they say tends to be a more favorable ... ( tell that to those with pain!)
also, i know it is hard waiting and want to know, but in terms of the neuorlogy field, 2 weeks for appt is rather quick.
hang in there
you do not have to have a history of any neurologic illness of family member for this to be ms.
and IF this is ms, keep in mind with the onset of sensory symptoms, they say tends to be a more favorable ... ( tell that to those with pain!)
also, i know it is hard waiting and want to know, but in terms of the neuorlogy field, 2 weeks for appt is rather quick.
hang in there
Really, you could do either thing--stay with your current person or try for the specialist. The MS guy wouldn't be wearing blinders such that he couldn't diagnose anything else, so don't worry about that aspect.
One thing though. Neuros don't have a great reputation here on this forum, the understatement of the century. I know this is a sweeping generalization, but it seems as if neurology is a lure for the egocentric in medicine, and these folks can be, shall we say, difficult. If you like the current guy and he is being proactive you're ahead of the game. You never know what else is out there in terms of personality, so bear that in mind. There've been loads of horror stories here along these lines.
Also, whichever doctor you see, I suggest that you don't try to lead the conversation in terms of MS. Many will jump on this and tell you it's all anxiety, till you want to bat them over the head. Ask good questions but don't come on too strong or let it be known that you're doing lots of research. That's the kiss of death, believe me.
And finally, should it come to this, feel free to find a third or fourth doctor. The local guy who's around the corner ain't always the best bet. A word to the wise, and all that....
Good luck, Trish.
ess
One thing though. Neuros don't have a great reputation here on this forum, the understatement of the century. I know this is a sweeping generalization, but it seems as if neurology is a lure for the egocentric in medicine, and these folks can be, shall we say, difficult. If you like the current guy and he is being proactive you're ahead of the game. You never know what else is out there in terms of personality, so bear that in mind. There've been loads of horror stories here along these lines.
Also, whichever doctor you see, I suggest that you don't try to lead the conversation in terms of MS. Many will jump on this and tell you it's all anxiety, till you want to bat them over the head. Ask good questions but don't come on too strong or let it be known that you're doing lots of research. That's the kiss of death, believe me.
And finally, should it come to this, feel free to find a third or fourth doctor. The local guy who's around the corner ain't always the best bet. A word to the wise, and all that....
Good luck, Trish.
ess
Thank you, ess. I have been reading (for a few weeks now), and decided to finally post tonight. I do see that many people have similar stories of their sundry symptoms and struggles to get a diagnosis.
And, you know, I did go through a neurological exam, and he had to continually scrape the sharp thing across the bottom of my left foot to get some kind of a response for the Babinski's test (and it was very much less of a response than what was gotten very easily from my right foot, don't remember if it was inverted, though). My left knee patellar reflex was much weaker and took several attempts to get. I stood with my eyes closed and feet together, and swayed a bit, but didn't have to step to regain balance. He didn't say anything about the gross exam. No EP testing (yet).
He's not an MS specialist, just the head of the neurology department at the local hospital. I've been warned against going to the local MS clinic because of the turnover of doctors and inconsistency of treating physicians (I guess it's a launching point for the careers of newbies and is a lot more research rather than treatment based). There is another neurologist that is an MS specialist that has come highly recommended by other doctors. Should I play my feeling that that's what is going on with me and make an appointment with this guy who specializes in MS, even if there's a chance it's not MS? You think I'd be potentially missing out on something else it could be by going to someone with a narrower specialization? (Yes, I over think things much of the time... :)
And, you know, I did go through a neurological exam, and he had to continually scrape the sharp thing across the bottom of my left foot to get some kind of a response for the Babinski's test (and it was very much less of a response than what was gotten very easily from my right foot, don't remember if it was inverted, though). My left knee patellar reflex was much weaker and took several attempts to get. I stood with my eyes closed and feet together, and swayed a bit, but didn't have to step to regain balance. He didn't say anything about the gross exam. No EP testing (yet).
He's not an MS specialist, just the head of the neurology department at the local hospital. I've been warned against going to the local MS clinic because of the turnover of doctors and inconsistency of treating physicians (I guess it's a launching point for the careers of newbies and is a lot more research rather than treatment based). There is another neurologist that is an MS specialist that has come highly recommended by other doctors. Should I play my feeling that that's what is going on with me and make an appointment with this guy who specializes in MS, even if there's a chance it's not MS? You think I'd be potentially missing out on something else it could be by going to someone with a narrower specialization? (Yes, I over think things much of the time... :)
thank you for your kind words and welcome, Moki. :)
i've been trying to be patient... and my patience has been tried, I suppose.
The last time I was able to talk to my neurologist (3 weeks ago, now) was before the last MRIs and the LP attempts. After the last LP attempt, he ordered more bloodwork, but our next appointment isn't until next Friday. He's trying to rule out MS, I believe, as he told me at our first visit (before the repeat MRIs) he thinks I "have less than a 50/50 chance of it being MS". Then the MRI results came back and he wants the LP because of the change in lesions in my brain and the discovery of a lesion on my spinal cord. So now he won't tell me "I think it might be MS, but I want to be sure" or "I don't think it's MS, but just to put our minds at ease, let's be sure." Instead I'm just sent for more bloodwork (my 3rd Lyme's disease titer that came back negative) and hopefully he'll see me next Friday sans CSF results to let me know where I'm at.
I'm sorry, I don't mean to take up so much space, or complain about a process I know is slow and at times very ambiguous. I just feel like I have to be brave when I'm really feeling tired. I really needed to get this out- and it was either here (what seems to be a very friendly and understanding atmosphere) or going up to a mountaintop and just screaming my head off to get it out of me. So, thanks for listening. :)
i've been trying to be patient... and my patience has been tried, I suppose.
The last time I was able to talk to my neurologist (3 weeks ago, now) was before the last MRIs and the LP attempts. After the last LP attempt, he ordered more bloodwork, but our next appointment isn't until next Friday. He's trying to rule out MS, I believe, as he told me at our first visit (before the repeat MRIs) he thinks I "have less than a 50/50 chance of it being MS". Then the MRI results came back and he wants the LP because of the change in lesions in my brain and the discovery of a lesion on my spinal cord. So now he won't tell me "I think it might be MS, but I want to be sure" or "I don't think it's MS, but just to put our minds at ease, let's be sure." Instead I'm just sent for more bloodwork (my 3rd Lyme's disease titer that came back negative) and hopefully he'll see me next Friday sans CSF results to let me know where I'm at.
I'm sorry, I don't mean to take up so much space, or complain about a process I know is slow and at times very ambiguous. I just feel like I have to be brave when I'm really feeling tired. I really needed to get this out- and it was either here (what seems to be a very friendly and understanding atmosphere) or going up to a mountaintop and just screaming my head off to get it out of me. So, thanks for listening. :)
Hello and welcome. If you've been reading on this forum you know that your story is so similar to many others' here. Diagnosis of neurological symptoms is rarely straightforward, even when you've got a good neuro, which yours may be, I don't know. If you were able to get an appointment two weeks away that's much better than par for the course.
You don't say what your office examinations have revealed--Babinski's, other reflexes--the usual neuro exam. This is a very important component of the overall picture. Also, apparently you haven't had Evoked Potential testing, which can reveal a lot. These are totally painless and non-invasive. An LP isn't absolutely necessary, and in fact lots of those with diagnosed MS have normal LPs. Less than a majority, for sure, but still a substantial number.
My advice to you is to complete the exam and testing picture, not worrying about an LP. With any luck that should not take long. If you then get a positve diagnosis, that will be the time to start with the injectible meds.
If your current neuro is an MS specialist, all the better. If you're left in limbo after all the test work, then absolutely find an MS specialist.
Hope this helps.
ess
You don't say what your office examinations have revealed--Babinski's, other reflexes--the usual neuro exam. This is a very important component of the overall picture. Also, apparently you haven't had Evoked Potential testing, which can reveal a lot. These are totally painless and non-invasive. An LP isn't absolutely necessary, and in fact lots of those with diagnosed MS have normal LPs. Less than a majority, for sure, but still a substantial number.
My advice to you is to complete the exam and testing picture, not worrying about an LP. With any luck that should not take long. If you then get a positve diagnosis, that will be the time to start with the injectible meds.
If your current neuro is an MS specialist, all the better. If you're left in limbo after all the test work, then absolutely find an MS specialist.
Hope this helps.
ess
Welcome to the forum. I wrote you a better post than this one will be but hit the wrong key and lost it all. I'm just too tired to redo it all so I apologize but this will be the short version.
Symptoms can vary person to person. Some may have similar experiences and some may have some symptoms that react different. Seems to be the nature of the beast.
Is your neuro ruling MS out at this time or is he still running tests? I would still go to your next appointment and then if you get no answers or he is not willing to go further, I would definetly go to someone else.
I understand your frustration as I am undiagnosed myself. I am in the process of looking for a new neuro and now a new family doc. It is hard when you know that something is wrong with your body and yes you want answers now. You will see from this forum that answers are not always fast in coming. Patience is something it seems we must all learn.
I know others will chime in who will have better info for you but I just wanted to welcome you and tell you, you are not alone.
Moki
Symptoms can vary person to person. Some may have similar experiences and some may have some symptoms that react different. Seems to be the nature of the beast.
Is your neuro ruling MS out at this time or is he still running tests? I would still go to your next appointment and then if you get no answers or he is not willing to go further, I would definetly go to someone else.
I understand your frustration as I am undiagnosed myself. I am in the process of looking for a new neuro and now a new family doc. It is hard when you know that something is wrong with your body and yes you want answers now. You will see from this forum that answers are not always fast in coming. Patience is something it seems we must all learn.
I know others will chime in who will have better info for you but I just wanted to welcome you and tell you, you are not alone.
Moki
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