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Not MS-- where to go from here?
Well, I just returned from my follow up with Neuro and was told to "forget about everything and bury this experience" and call if it comes back (which is what he said 9 months ago).... what do I do now? If its not MS, what mimics and just plain craziness could it be? I don't want a diagnosis, but I do what answers... sigh... please be honest. Is it time to just forget about it, and ignore when it happens again???
My background if it helps:
Overview: Sudden onset of symptoms in late October 2007 included fatigue, attention issues, dizziness, headaches, left side tingling and weakness, balance/walking issues. During testing found UTI and kidney stones (noticed constant urge to urinate). Referred to neurologist -- initial test showed coordination issues, hyperreflexes. Neg for lyme (western blot), normal ANA, neg lead, neg ALS, normal screens.
Mid November 2007 both legs involved, and walking is impossible; hospitalization occurred at this point. MRI of brain and spine (No constrast used), and LP all normal. Late November on tingling in both legs/hands periodically. Headaches come and go. Pain/aching is more at night than morning.
Mid Dec 2007 until April 2008 feel normal!
April 2008: It returns. Get ice pick headaches throughout day, notice leg drops when walking. Right Leg cramping
Right Leg pain continues, Hyperreflexia seen.Ankle clonus. Balance issues. Fatigue especially in legs after long day. See new PCP who checks B12 (normal), but suggestions intramuscular injections for 4 months just to increase a bit (start 4/24). This episode lasts a little over a week.
May/June 2008: Feeling fine aside from days here and there where fatigue or dizziness occurs... nothing too bad or lasting too long. PCP referred me new neuro who comments on coordination issues, hyper reflexes, residual left side weakness etc. Believes it could be MS. MRI (w/ contrast) of Brain finds 2 small lesions 4mm and 2mm. Normal T and C spine MRIs. Normal evoked potentials. Neuro is calls this probable MS due to 2 known attacks, clinical lesions viewed (hyerreflexes and coordination), and 2 MRI lesions. Nothing definite, could just be a fluky thing. Told to follow up 6 months later.
January 2009: Do follow up MRI (with contrast) and find lesion in Pons is not visible, Midbrain small lesion still visible. And another LP is done, just in case... comes back clear. At this point neuro tells me to just forget about it all, it is probably stress.
Jan-Sept 2009: I forget about it all. Walking 3 miles a day. Enjoying life. Go through a lot of crazy stressful events, start seeing therapist to help me cope. Feel fine physically, but want the skills to work through issues.
Sept 2009: Sudden onset of symptoms legs feel very heavy, lots of leg pain and cramps. Muscles are so stiff in legs I can barely walk. Prescribe gabapentin and baclofen, start feeling relief after a couple days... after 3 weeks symptoms still there but barely noticeable. Go to PCP who gets me into neuro right away. Neuro retests finds reflexes still hyper, and definite spasticity in legs. Refers for another MRI... results are normal, no signs of any lesions. Told to just bury it.
My background if it helps:
Overview: Sudden onset of symptoms in late October 2007 included fatigue, attention issues, dizziness, headaches, left side tingling and weakness, balance/walking issues. During testing found UTI and kidney stones (noticed constant urge to urinate). Referred to neurologist -- initial test showed coordination issues, hyperreflexes. Neg for lyme (western blot), normal ANA, neg lead, neg ALS, normal screens.
Mid November 2007 both legs involved, and walking is impossible; hospitalization occurred at this point. MRI of brain and spine (No constrast used), and LP all normal. Late November on tingling in both legs/hands periodically. Headaches come and go. Pain/aching is more at night than morning.
Mid Dec 2007 until April 2008 feel normal!
April 2008: It returns. Get ice pick headaches throughout day, notice leg drops when walking. Right Leg cramping
Right Leg pain continues, Hyperreflexia seen.Ankle clonus. Balance issues. Fatigue especially in legs after long day. See new PCP who checks B12 (normal), but suggestions intramuscular injections for 4 months just to increase a bit (start 4/24). This episode lasts a little over a week.
May/June 2008: Feeling fine aside from days here and there where fatigue or dizziness occurs... nothing too bad or lasting too long. PCP referred me new neuro who comments on coordination issues, hyper reflexes, residual left side weakness etc. Believes it could be MS. MRI (w/ contrast) of Brain finds 2 small lesions 4mm and 2mm. Normal T and C spine MRIs. Normal evoked potentials. Neuro is calls this probable MS due to 2 known attacks, clinical lesions viewed (hyerreflexes and coordination), and 2 MRI lesions. Nothing definite, could just be a fluky thing. Told to follow up 6 months later.
January 2009: Do follow up MRI (with contrast) and find lesion in Pons is not visible, Midbrain small lesion still visible. And another LP is done, just in case... comes back clear. At this point neuro tells me to just forget about it all, it is probably stress.
Jan-Sept 2009: I forget about it all. Walking 3 miles a day. Enjoying life. Go through a lot of crazy stressful events, start seeing therapist to help me cope. Feel fine physically, but want the skills to work through issues.
Sept 2009: Sudden onset of symptoms legs feel very heavy, lots of leg pain and cramps. Muscles are so stiff in legs I can barely walk. Prescribe gabapentin and baclofen, start feeling relief after a couple days... after 3 weeks symptoms still there but barely noticeable. Go to PCP who gets me into neuro right away. Neuro retests finds reflexes still hyper, and definite spasticity in legs. Refers for another MRI... results are normal, no signs of any lesions. Told to just bury it.
I'm so glad your PCP is on your side. That's a big relief. It's so hard to be your own advocate, especially when you're suffering from cog fog and other symptoms that go along with MS. It's even worse when your doctors aren't doing their job.
What a great PCP you must have. I'm glad you're going to an MS clinic and getting a spine MRI. Both absolutely needed.
Go get 'em, Quix MD. Hooah.
Bio
Go get 'em, Quix MD. Hooah.
Bio
You know your body more than anyone and you know you are having abnormal issues. They should not be ignored and you should seek another Dr.
I am back from the PCP!
It went really well. I reread my notes, had my questions ready, and really didn't need them. As soon as I told her I had another attack and what my symptoms were she was concerned. I told her my neuro's response to the "clean" brain MRI and she was in shock. She said that I needed one of my spine due to the symptoms and is getting me a consult with the local MS clinic! I brought up many of the points raised her, and she agreed!!
Woohoo for good PCP! So, now we wait for the appointment. In the meantime, I try to track down every MRI, and file from any doctor I've seen the past 3 years.
Thank you again all!
It went really well. I reread my notes, had my questions ready, and really didn't need them. As soon as I told her I had another attack and what my symptoms were she was concerned. I told her my neuro's response to the "clean" brain MRI and she was in shock. She said that I needed one of my spine due to the symptoms and is getting me a consult with the local MS clinic! I brought up many of the points raised her, and she agreed!!
Woohoo for good PCP! So, now we wait for the appointment. In the meantime, I try to track down every MRI, and file from any doctor I've seen the past 3 years.
Thank you again all!
Hi, I'm going to try to analyze your situation in the context of MS. As you know I am a phsyician with MS and I read the MS medical literature almost religiously.
Your neuro has me totally baffled. On the one hand he analyzes your situation quite accurately - upt to a point. He has noticed that you fulfill the criteria for diagnosis in the two most important categories. You have had more than two clinical attacks of symptoms that are classic for demyelination. You have asymmetric weakness, fatigue, eye pain suggestive of optic neuritis, vertigo and balance issues, perineal numbness and stiff limbs, and other suggestive symptoms.
The neurologist at various visits has documented hyperreflexia, weakness, altered sensation, impaired coordination and SPASTICITY in specific limbs. These findings speak to leasions in the brainstem and mostly in the spine. Hyperreflexia is always a sign of spinal cord involvement and localized spasticity is also due to spinal involvement. Vertigo, possible optic neuritis and impaired coordination indicate lesions in the brainstem and or cerebellum. The numbness of the perineum (genital area) is always indicative of a spinal lesion.
The list of rule-outs you gave us is not comprehensive. A typical battery of blood tests would include B12, ANA, ESR, VDRL, HIV, Lyme (preferably Western Blot, ACE, Anti-Phospolipid, Anti-Cardiolipin, Copper ceruloplasm, and if you are being VERY complete anti-HTLV I and HTLV II.
If the rule-out of mimics is negative then you have already met criteria for the diagnosis of MS. Read that last sentence again. You qualify NOW for a diagnosis of MS. Now, the reality is that almost all neurologists expect to see some additional evidence on the MRI. YOU HAVE this additional evidence. You have two lesions in areas that are highly suspect for MS. Most neuros only count lesions that are >2mm in size. You have those. At this point you do not need to look any further at the McDonald Criteria. When the "clinical" criteria (History and neuro exam) are fulfilled statistically if there is just one MRI lesion then you are very likely to have MS. The percentage of people who do have MS rises if you have two. At this point the likelihood is only marginally increased if there are three or more. So, by all measures the likelihood of you having MS is HUGE!
Now, the neuro loses me. He sees that one of the MRI lesions has disappeared. This is totally in keeping with the dynamic state of MS where lesions form and some resolve. If he is dismissing MS because no new lesions have formed, then he is not very aware that there are no mandates that say how often new lesions form. The literature is completely clear that a person may have a static MRI for years.
He tells you to forget all this happened even though your symptoms have been so severe as to land you in the hospital and you still have lingering weakness and spasticity. This is crazy! He, himself, would not ignore this in any of his own family members.
The suggestion on anyone's part, including yours, that any of this is stress (ie. a severe and changing conversion disorder) is also pretty nutty. That is not how conversion disorder behave, nor do they cause spasticity nor clonus.
He seems reluctant to make the diagnosis of MS even though your statistical chances of having MS are in the high 90% range. This is easily enough to make the diagnosis and begin therapy with a Disease Modifying Drug. Your symptoms are NOT benign. You have documented leg weakness and spasticity. You have already deteriorated a significant amount in the last year.
If he is using the negative LP as a reason to write you off, I can only re-emphasize that it is a myth that a negative LP rules out MS. Yes, the best studies show that between 90% and 97% of people with definite MS have positive findings on the LP. That means AS FEW AS 1 in 10 AND AS FEW AS 1 IN 33 DO NOT! Do we ignore that those people when ALL of the other (more important) criteria have been fulfilled? Remember, an LP is not a required part of the workup of MS. We had had many experts in MS tell us that the results of the LP cannot be used to rule out MS, only to add evidence FOR the diagnosis. An article written as late as this year by the international Consortium of MS Clinics states that using the best techniques - in real world settings - only 90% of people have 2 or more O-Bands.
So, to my understanding of the data that you have provided, you already fulfill ALL of the need requirements for a diagnosis of MS, including sufficient MRI information. I don't understand why any doctor would ride the fence with your case and am aghast that a doctor would advise you to just "forget it!" You are already very disabled and need to be on a DMD ASAP!
I hope you see this in time to take a copy to your PCP. You do need a new neurologist.
Good luck
Quix, MD
Your neuro has me totally baffled. On the one hand he analyzes your situation quite accurately - upt to a point. He has noticed that you fulfill the criteria for diagnosis in the two most important categories. You have had more than two clinical attacks of symptoms that are classic for demyelination. You have asymmetric weakness, fatigue, eye pain suggestive of optic neuritis, vertigo and balance issues, perineal numbness and stiff limbs, and other suggestive symptoms.
The neurologist at various visits has documented hyperreflexia, weakness, altered sensation, impaired coordination and SPASTICITY in specific limbs. These findings speak to leasions in the brainstem and mostly in the spine. Hyperreflexia is always a sign of spinal cord involvement and localized spasticity is also due to spinal involvement. Vertigo, possible optic neuritis and impaired coordination indicate lesions in the brainstem and or cerebellum. The numbness of the perineum (genital area) is always indicative of a spinal lesion.
The list of rule-outs you gave us is not comprehensive. A typical battery of blood tests would include B12, ANA, ESR, VDRL, HIV, Lyme (preferably Western Blot, ACE, Anti-Phospolipid, Anti-Cardiolipin, Copper ceruloplasm, and if you are being VERY complete anti-HTLV I and HTLV II.
If the rule-out of mimics is negative then you have already met criteria for the diagnosis of MS. Read that last sentence again. You qualify NOW for a diagnosis of MS. Now, the reality is that almost all neurologists expect to see some additional evidence on the MRI. YOU HAVE this additional evidence. You have two lesions in areas that are highly suspect for MS. Most neuros only count lesions that are >2mm in size. You have those. At this point you do not need to look any further at the McDonald Criteria. When the "clinical" criteria (History and neuro exam) are fulfilled statistically if there is just one MRI lesion then you are very likely to have MS. The percentage of people who do have MS rises if you have two. At this point the likelihood is only marginally increased if there are three or more. So, by all measures the likelihood of you having MS is HUGE!
Now, the neuro loses me. He sees that one of the MRI lesions has disappeared. This is totally in keeping with the dynamic state of MS where lesions form and some resolve. If he is dismissing MS because no new lesions have formed, then he is not very aware that there are no mandates that say how often new lesions form. The literature is completely clear that a person may have a static MRI for years.
He tells you to forget all this happened even though your symptoms have been so severe as to land you in the hospital and you still have lingering weakness and spasticity. This is crazy! He, himself, would not ignore this in any of his own family members.
The suggestion on anyone's part, including yours, that any of this is stress (ie. a severe and changing conversion disorder) is also pretty nutty. That is not how conversion disorder behave, nor do they cause spasticity nor clonus.
He seems reluctant to make the diagnosis of MS even though your statistical chances of having MS are in the high 90% range. This is easily enough to make the diagnosis and begin therapy with a Disease Modifying Drug. Your symptoms are NOT benign. You have documented leg weakness and spasticity. You have already deteriorated a significant amount in the last year.
If he is using the negative LP as a reason to write you off, I can only re-emphasize that it is a myth that a negative LP rules out MS. Yes, the best studies show that between 90% and 97% of people with definite MS have positive findings on the LP. That means AS FEW AS 1 in 10 AND AS FEW AS 1 IN 33 DO NOT! Do we ignore that those people when ALL of the other (more important) criteria have been fulfilled? Remember, an LP is not a required part of the workup of MS. We had had many experts in MS tell us that the results of the LP cannot be used to rule out MS, only to add evidence FOR the diagnosis. An article written as late as this year by the international Consortium of MS Clinics states that using the best techniques - in real world settings - only 90% of people have 2 or more O-Bands.
So, to my understanding of the data that you have provided, you already fulfill ALL of the need requirements for a diagnosis of MS, including sufficient MRI information. I don't understand why any doctor would ride the fence with your case and am aghast that a doctor would advise you to just "forget it!" You are already very disabled and need to be on a DMD ASAP!
I hope you see this in time to take a copy to your PCP. You do need a new neurologist.
Good luck
Quix, MD
Hi. Take a look at your PCP notes and take a sheet or two if she/he commented on anything in particular. Especially anything that the neuro left out.
I would suggest that you contact the hospital that you were admitted to and get those records, That was a significant episode and it would be interesting to know what the doctors were thinking, and what tests were done
I think your neurologist had a brain lapse. What in the world is right.
In your particular case, the remit and relapse is a big factor. I do not believe that you have to worry about ALS. It presents very differently than what you describe.
Take care.
I would suggest that you contact the hospital that you were admitted to and get those records, That was a significant episode and it would be interesting to know what the doctors were thinking, and what tests were done
I think your neurologist had a brain lapse. What in the world is right.
In your particular case, the remit and relapse is a big factor. I do not believe that you have to worry about ALS. It presents very differently than what you describe.
Take care.
I wanted to thank you all again for such helpful tips... I was trying to pull my stuff together for my PCP appointment next week, and found all my medical files (I learned early in the process (and from reading this site) to get copies of everything)... rereading them... I'm even more confused....
(I don't have notes from initial PCP & neuro in fall 2007... I left them both after my 1st attack after some prodding of co-workers who had good experiences w/ current pcp who then referred me to new neuro)
Neuro's notes May 2008:
1. Description and characteristics of her symptoms and clincial presentation consisting of parethesias, left-sided weakenss and diffuse hyperreflexia more on the left than right with sustained clonus and then she has a history of eye pain are all very highly suspicious of clinical diagnosis of multiple sclerosis. History of eye pain suggests she may have had optic neuritis. Her gender and age are consistent with the diagnosis.
Neuro Notes during follow up from 1st visit in May 2008:
-Still still has deffus hyperreflexia and clonus as described in detail in my last office note... most importantly her MRI brain scan down w/ contrast was initially reported as normal, however I reviewed the study myslef and noted that there should be a lision in pons. Indeed after discussing w/ the radiologist there is a subtle 4-mm focus of increase T2 signal within the right aspect of the pons... additionally there is a 2-3mm focus on increase signal within the midbrain as well.
1. Given the clinical history, clinical findings of diffuse hyerreflexia and left-sided weakness, I see that these MRI findings on the brain scan done w/ contrast are significant. While the findings are subtle, the clinical settings is more in favor of ms than any other diagnosis. We have clinical history of the events that occured sperated by time and now we have 2 small lesions in the brainstem. These are all consistent with central demyelinating disease.
(then goes on to say he's waiting for NMO-IgG antibody test...)
June 2008 Neuro notes. (Was not in an attack at this time)
NMO-IgG antibody test came back negative... so he told me to call if I have another attack or 3 months, which every came first for another MRI. In the notes he states "Presently I am not starting her on any treatment for MS since the diagnosis is not fully confirmed"
Neuro notes Sept 2008: (Was not in an attack at this time)
-Neurological exam unchanged. Still diffuse hyperreflexia. Babinski absent bilaterally. No new labs or students.... recommends coming back for MRI in Jan 2009.
Neuro notes Jan 2009: (Was not in an attack at this time)
-Neuro exam shows normal mental status. No focal findings. Deep tendon reflexes remain brisk throughout being 3+ with few beats of clonus at the ankles which is 4+. Toes are both downgoing. Gait/station are normal.
I don't have any notes after that... I do have my radiology report from that MRI in Jan... and it said that it saw no new areas, couldn't see pons lesion, but midbrain lesion still present. Also, had another LP done which was "within normal limits". So after my Jan 2009 appointment, he said we needed to wait and see... and that's why I ended up back there last month when I had another incident....
so what happened? Its so weird to see those and read them now after all this time. I feel good for 9 months, come back, have a normal MRI and get told to "forget all about this"... what in the world??
Should I bring my copies of records to PCP or is that overkill?
(I don't have notes from initial PCP & neuro in fall 2007... I left them both after my 1st attack after some prodding of co-workers who had good experiences w/ current pcp who then referred me to new neuro)
Neuro's notes May 2008:
1. Description and characteristics of her symptoms and clincial presentation consisting of parethesias, left-sided weakenss and diffuse hyperreflexia more on the left than right with sustained clonus and then she has a history of eye pain are all very highly suspicious of clinical diagnosis of multiple sclerosis. History of eye pain suggests she may have had optic neuritis. Her gender and age are consistent with the diagnosis.
Neuro Notes during follow up from 1st visit in May 2008:
-Still still has deffus hyperreflexia and clonus as described in detail in my last office note... most importantly her MRI brain scan down w/ contrast was initially reported as normal, however I reviewed the study myslef and noted that there should be a lision in pons. Indeed after discussing w/ the radiologist there is a subtle 4-mm focus of increase T2 signal within the right aspect of the pons... additionally there is a 2-3mm focus on increase signal within the midbrain as well.
1. Given the clinical history, clinical findings of diffuse hyerreflexia and left-sided weakness, I see that these MRI findings on the brain scan done w/ contrast are significant. While the findings are subtle, the clinical settings is more in favor of ms than any other diagnosis. We have clinical history of the events that occured sperated by time and now we have 2 small lesions in the brainstem. These are all consistent with central demyelinating disease.
(then goes on to say he's waiting for NMO-IgG antibody test...)
June 2008 Neuro notes. (Was not in an attack at this time)
NMO-IgG antibody test came back negative... so he told me to call if I have another attack or 3 months, which every came first for another MRI. In the notes he states "Presently I am not starting her on any treatment for MS since the diagnosis is not fully confirmed"
Neuro notes Sept 2008: (Was not in an attack at this time)
-Neurological exam unchanged. Still diffuse hyperreflexia. Babinski absent bilaterally. No new labs or students.... recommends coming back for MRI in Jan 2009.
Neuro notes Jan 2009: (Was not in an attack at this time)
-Neuro exam shows normal mental status. No focal findings. Deep tendon reflexes remain brisk throughout being 3+ with few beats of clonus at the ankles which is 4+. Toes are both downgoing. Gait/station are normal.
I don't have any notes after that... I do have my radiology report from that MRI in Jan... and it said that it saw no new areas, couldn't see pons lesion, but midbrain lesion still present. Also, had another LP done which was "within normal limits". So after my Jan 2009 appointment, he said we needed to wait and see... and that's why I ended up back there last month when I had another incident....
so what happened? Its so weird to see those and read them now after all this time. I feel good for 9 months, come back, have a normal MRI and get told to "forget all about this"... what in the world??
Should I bring my copies of records to PCP or is that overkill?
All good thoughts! To answer your questions I'm 28 y/o white female, it all began 2 weeks after my 26th birthday though. I did have nerve conduction (45 min kind) during my first attack in 07. And all MRI machines have been 1.5T. The first 2 times I had full brain and spine, this last one and my Jan. 09 were only brain... The good thing (I think?) is the last 3 MRIs were on the same machine at the same local hospital so I guess that's good for comparison purposes.
Quix -- You did make me giggle a little with the idea of spitting nails... My first reaction is I'd like to see a cage make between you and my *old* neuro...
Quix -- You did make me giggle a little with the idea of spitting nails... My first reaction is I'd like to see a cage make between you and my *old* neuro...
OMG - YOUR NEURO IS AN IDIOT!
stay tuned for more.
A fired up Quix - I'm getting ready to spit nails and nasty words
Q
stay tuned for more.
A fired up Quix - I'm getting ready to spit nails and nasty words
Q
Hey - your symptoms sound like what most of the rest of us Limbolanders are going through. I vote for: New Neuro, New Neuro, and New neuro!!!
You have way too much going on just to ignore it - how could you? Those guys that give that kind of shabby advice should try to walk in our shoes just for a day!!
You say you've been ruled out for MS and ALS - but I doubt that you really have been. I have known of soooo many people who were ruled out for one or the other multiple times by numerous doctors, but then they ended up having one or the other.
Just look at what so many people on this website, finally diagnosed with MS, have had to go through and how many MDs they had to see before getting their MS diagnosis!!
RE: MS: Did you have your MRIs done on a 3 Tesla??? If not, that might give you your answer - it worked for Quixotic1!. Also, did you have only a brain MRI or did you also have cervical and thoracic spine MRI? That is necessary and may give you your answer (on a 3Tesla). Sounds like you would definitely have spinal lesions with your leg involvement and increased muscle tone and weakness!!
RE: ALS: Did you have a nerve conduction study/EMG that lasted several hours or was yours of the usual 45-minute variety? Most only have the 45-minute test. To sufficiently test muscle groups, you need a test lasting 2-3 hours!! I am aware of people who had multiple negative 45-minute EMG/nerve conduction studies and then later found out they really did have ALS!
It is important to know what is afflicting you: In my opinion, the worst thing is not knowing!! Whatever it is, you can then deal with it once you know.
What is your age??? If you are not in the age group that many neuros feel is appropriate for new-onset MS (20-40) then you may be experiencing the kind of age discrimination others of us here have felt when trying to obtain our diagnoses. For instance, a neuro might tell a 50-year-old or a 60-year-old that they have "microvascular disease" instead of MS even though the lesions and symptoms are screaming out "MS" simply because they aren't in the age group the medical textbooks say have new-onset MS. Some use "fibromyalgia" as a general cop-out diagnosis instead of saying "MS."
Right now I, who am in my 60s, am faced with a radiologist's report on my 3 Tesla MRI of the spine stating there are "no abnormalities or hyperintensities present on the spinal cord" even though I can clearly see numerous bright, bright spots, like strings of pearls, lighting up different areas of my spinal cord. If they have to, I guess, some doctors, with their rigid beliefs about age, will just deny pertinent diagnostic findings in order to preserve their belief that MS just presents in younger people!!
So, you have a lot of sympathizers here - many of us are in the same boat as you and have been there for years!! I am aware of a woman who was finally diagnosed with MS at age 70 after having it for decades!! One took 20 years to be diagnosed!
Hopefully, it won't be that long for you, especially if you try some of the above suggestions.
You could also attend support groups for the various diseases you have under consideration to find out from people already diagnosed who is a good neuro to go to and for info on how they got diagnosed.
Good luck to you and all the rest of us Limbolanders! It's miserable here!
WAF
You have way too much going on just to ignore it - how could you? Those guys that give that kind of shabby advice should try to walk in our shoes just for a day!!
You say you've been ruled out for MS and ALS - but I doubt that you really have been. I have known of soooo many people who were ruled out for one or the other multiple times by numerous doctors, but then they ended up having one or the other.
Just look at what so many people on this website, finally diagnosed with MS, have had to go through and how many MDs they had to see before getting their MS diagnosis!!
RE: MS: Did you have your MRIs done on a 3 Tesla??? If not, that might give you your answer - it worked for Quixotic1!. Also, did you have only a brain MRI or did you also have cervical and thoracic spine MRI? That is necessary and may give you your answer (on a 3Tesla). Sounds like you would definitely have spinal lesions with your leg involvement and increased muscle tone and weakness!!
RE: ALS: Did you have a nerve conduction study/EMG that lasted several hours or was yours of the usual 45-minute variety? Most only have the 45-minute test. To sufficiently test muscle groups, you need a test lasting 2-3 hours!! I am aware of people who had multiple negative 45-minute EMG/nerve conduction studies and then later found out they really did have ALS!
It is important to know what is afflicting you: In my opinion, the worst thing is not knowing!! Whatever it is, you can then deal with it once you know.
What is your age??? If you are not in the age group that many neuros feel is appropriate for new-onset MS (20-40) then you may be experiencing the kind of age discrimination others of us here have felt when trying to obtain our diagnoses. For instance, a neuro might tell a 50-year-old or a 60-year-old that they have "microvascular disease" instead of MS even though the lesions and symptoms are screaming out "MS" simply because they aren't in the age group the medical textbooks say have new-onset MS. Some use "fibromyalgia" as a general cop-out diagnosis instead of saying "MS."
Right now I, who am in my 60s, am faced with a radiologist's report on my 3 Tesla MRI of the spine stating there are "no abnormalities or hyperintensities present on the spinal cord" even though I can clearly see numerous bright, bright spots, like strings of pearls, lighting up different areas of my spinal cord. If they have to, I guess, some doctors, with their rigid beliefs about age, will just deny pertinent diagnostic findings in order to preserve their belief that MS just presents in younger people!!
So, you have a lot of sympathizers here - many of us are in the same boat as you and have been there for years!! I am aware of a woman who was finally diagnosed with MS at age 70 after having it for decades!! One took 20 years to be diagnosed!
Hopefully, it won't be that long for you, especially if you try some of the above suggestions.
You could also attend support groups for the various diseases you have under consideration to find out from people already diagnosed who is a good neuro to go to and for info on how they got diagnosed.
Good luck to you and all the rest of us Limbolanders! It's miserable here!
WAF
I think it is safe to say that you are not crazy. It is normal to have some level of anxiety when having these rather bizarre symptoms especially when there is no explanation for it's cause.
Some thoughts for you after reading your post again. In MS, it is common to have a relapse anytime there is an infection or fever. The Oct. 2007 UTI coincided with suggestive symptoms of a neurological episode that got progressively worse and landed you in the hospital unable to walk.
It is also common to have a relapse or pseudo-relapse during times of extreme stress. Doctors don't always recognize this, but ask anyone who has MS. They will tell you.
More questions for your doctor:
What disease/syndromes could cause brain lesions to seemingly disappear?
What " """ causes a leg drop?
What disorder can cause numbness in the urinary tract that almost causes me to pee myself?
I am not suggesting that you have MS, but your symptoms and MRI are highly suggestive of it.
Before I had a diagnosis I was having very mild sensory symptoms. When I awoke with double vision I saw a physician who thought the accompanying numbness (all four extremities) was from anxiety. Of course I had anxiety - duh! She prescribed me Flonase for my double vision. Oh thank you very much My point is, it's not uncommon for doctors to use the "you are crazy" card when they are either too stupid, lazy, incompetent, uninterested or don't give a cr**p to figure out a cause. At best it's just plain mean to abandon their patient during the diagnosis process. In my opinion it is unethical.
It would be wise for you to continue working with your PCP and keep an eye on you. The good news is that anything life threatening has been ruled out - so continue your search for answers at a pace you are comfortable with.
The best piece of advise for now is to treat ANY infection promptly. If you suspect a UTI in anyway get in checked out. When your body is fighting infection it makes a type of interferon to defend your body from bacterial/viral invaders. (not the same type of interferons that is part of the immune modifying drugs used in MS) It is believed that these infections/interferons is what causes the immune system to go into overdrive and possibly cause a relapse - an immune attack on the CNS.
Let us know how you are doing. Until then, be well and take good care of yourself.
P.S Your neurologist is a jerk.
Some thoughts for you after reading your post again. In MS, it is common to have a relapse anytime there is an infection or fever. The Oct. 2007 UTI coincided with suggestive symptoms of a neurological episode that got progressively worse and landed you in the hospital unable to walk.
It is also common to have a relapse or pseudo-relapse during times of extreme stress. Doctors don't always recognize this, but ask anyone who has MS. They will tell you.
More questions for your doctor:
What disease/syndromes could cause brain lesions to seemingly disappear?
What " """ causes a leg drop?
What disorder can cause numbness in the urinary tract that almost causes me to pee myself?
I am not suggesting that you have MS, but your symptoms and MRI are highly suggestive of it.
Before I had a diagnosis I was having very mild sensory symptoms. When I awoke with double vision I saw a physician who thought the accompanying numbness (all four extremities) was from anxiety. Of course I had anxiety - duh! She prescribed me Flonase for my double vision. Oh thank you very much My point is, it's not uncommon for doctors to use the "you are crazy" card when they are either too stupid, lazy, incompetent, uninterested or don't give a cr**p to figure out a cause. At best it's just plain mean to abandon their patient during the diagnosis process. In my opinion it is unethical.
It would be wise for you to continue working with your PCP and keep an eye on you. The good news is that anything life threatening has been ruled out - so continue your search for answers at a pace you are comfortable with.
The best piece of advise for now is to treat ANY infection promptly. If you suspect a UTI in anyway get in checked out. When your body is fighting infection it makes a type of interferon to defend your body from bacterial/viral invaders. (not the same type of interferons that is part of the immune modifying drugs used in MS) It is believed that these infections/interferons is what causes the immune system to go into overdrive and possibly cause a relapse - an immune attack on the CNS.
Let us know how you are doing. Until then, be well and take good care of yourself.
P.S Your neurologist is a jerk.
Thanks for those great questions! I'm definitely going to write everything down before next week. I actually made a follow up with my therapist to talk through things tomorrow.
When this newest relapse happened, I went and saw her and asked the "am I hysterical" question and she said that she actually was going to comment that week on how much more at ease I seemed since I first came in during the beginning of the summer. Do I get high strung sometimes? Absolutely. Do I get stressed with life's curveballs? Who doesn't! But I don't think that I go hysterical. But I am no psychiatrist, so maybe a evaluation from one would be good, to put those "concerns" aside.
To answer your questions, when this newest relapse started I hadn't noticed so much frequency issues, but almost numbness... as if I didn't know I had to go, and when I finally did, I would realize it had been a very long time (And I'm usually a hurry up and run there kinda gal).
My gait during my episodes is definitely not normal, its as if my legs are just too stiff, and I tend to hobble, using the wall/hand rails as support ... but now that I'm starting to feel better (yay!!!) I feel like my walk is normal, there isn't that limp or pure exhaustion from trying to make it down the hall.
Luckily, I've been starting to feel better the past few days, which makes it all not seem so hopeless, nothing like feel bad and having no answers... at least now I'm answerless, but feeling pretty decent.
When this newest relapse happened, I went and saw her and asked the "am I hysterical" question and she said that she actually was going to comment that week on how much more at ease I seemed since I first came in during the beginning of the summer. Do I get high strung sometimes? Absolutely. Do I get stressed with life's curveballs? Who doesn't! But I don't think that I go hysterical. But I am no psychiatrist, so maybe a evaluation from one would be good, to put those "concerns" aside.
To answer your questions, when this newest relapse started I hadn't noticed so much frequency issues, but almost numbness... as if I didn't know I had to go, and when I finally did, I would realize it had been a very long time (And I'm usually a hurry up and run there kinda gal).
My gait during my episodes is definitely not normal, its as if my legs are just too stiff, and I tend to hobble, using the wall/hand rails as support ... but now that I'm starting to feel better (yay!!!) I feel like my walk is normal, there isn't that limp or pure exhaustion from trying to make it down the hall.
Luckily, I've been starting to feel better the past few days, which makes it all not seem so hopeless, nothing like feel bad and having no answers... at least now I'm answerless, but feeling pretty decent.
How are you doing? Don't let this neuro get under your skin or have you doubt yourself.
Questions for your PCP: Why do I have hyper reflexes and definite spasticity in legs?
What other diseases/syndromes could cause a remit/relapse pattern?
Have I been tested for those?
What can cause ankle clonus? (All of your signs would be hard to fake or exaggerate.)
Talk with your therapist and ask if you exhibit any hysterical or somatic behaviors/signs. Ask the same question to your PCP. There have been a couple of members here recently who got a psychiatric evaluation at the request of their neuros. So far, no one is "crazy."
I have a few questions for you: how is your urinary frequency now? How is your gait (do you walk normally - an easy flow when walking? )
Keep us posted.
Questions for your PCP: Why do I have hyper reflexes and definite spasticity in legs?
What other diseases/syndromes could cause a remit/relapse pattern?
Have I been tested for those?
What can cause ankle clonus? (All of your signs would be hard to fake or exaggerate.)
Talk with your therapist and ask if you exhibit any hysterical or somatic behaviors/signs. Ask the same question to your PCP. There have been a couple of members here recently who got a psychiatric evaluation at the request of their neuros. So far, no one is "crazy."
I have a few questions for you: how is your urinary frequency now? How is your gait (do you walk normally - an easy flow when walking? )
Keep us posted.
I can't believe that I am shocked but I am!!! Your doctor takes the cake and I would like to stuff it in his face. Even if you don't have MS with your history no doctor should tell you to just shelf it-arggghhh!
I would ask your PCP if you have been tested for ALL MS mimics and include Devics's disease. There were a lot of us being tested over the past year for that because we didn't fit quite nicely enough in the MS column. I already have my RRMS dx but had so many things that the docs couldn't figure out they wanted to be sure.
Then maybe you could ask the PCP for another neuro recommendation. How could you be comfortable with this one after that. This is worse then all of the doctors that have told us it's stress or depression.
Just bury it or shelf it my butt - ha!!! Sorry I feel better now that I vented.
Good luck & keep us posted
Hugs,
Erin :)
Thanks for all the support everyone! To be honest, I don't know if he was an MS specialist or not... he definitely had enough brochures in the waiting room, but I didn't see anything that would say that. What hurts the most was, he seemed pretty decent when I first went, he listened, he was supportive, he even talked about support groups when the 2 lesions showed up, but since nothing else has showed he's just been pushing me away.
Karen -- I'm pretty sure it was MS protocol, at least the report from the radiologist mentioned using special cuts/flares something like that. The latest report even says that it cant see the previous spots, but it might be due to different cuts.
I'm definitely going to arm myself with questions when I go to my PCP next week. Here is what I have so far... are there any missing?
-I seemed to meet the MS diagnosis criteria (2+ attacks, 2 objective lesions, abnormal neuro exam, response to heat etc.) what keeps me from a diagnosis?
-What are possible mimics?
-Is there a way to rule out "stress" given that they happen in stressful and non stressful times?
-Anything we missed in the blood labs before (lyme, ALS, thyroid, etc)?
-Do I need to see a different specialist (rheumy told me it was def. NOT fibro since I have no pain points)?
Karen -- I'm pretty sure it was MS protocol, at least the report from the radiologist mentioned using special cuts/flares something like that. The latest report even says that it cant see the previous spots, but it might be due to different cuts.
I'm definitely going to arm myself with questions when I go to my PCP next week. Here is what I have so far... are there any missing?
-I seemed to meet the MS diagnosis criteria (2+ attacks, 2 objective lesions, abnormal neuro exam, response to heat etc.) what keeps me from a diagnosis?
-What are possible mimics?
-Is there a way to rule out "stress" given that they happen in stressful and non stressful times?
-Anything we missed in the blood labs before (lyme, ALS, thyroid, etc)?
-Do I need to see a different specialist (rheumy told me it was def. NOT fibro since I have no pain points)?
COMMUNITY LEADER
OH MY GOD! What on earth is going on, run, crawl, shuffle or drag your self to another neuro, what ever you do dont forget about it, sorry but i cant even imagine its possible to forget your roller coaster ride, he's a twit!
I think we might need a list of good places to go (not that it would help me i'm in OZ) and the ones to avoid like the plague.
Cheers......JJ
I think we might need a list of good places to go (not that it would help me i'm in OZ) and the ones to avoid like the plague.
Cheers......JJ
Hi. Your neurologists response is ridiculous. Absurd. Something is obviously going on. Have you seen a rheumatologist yet? What do your instincts tell you?
Would you happen to know if your MRI's were done with "MS Protocol?"
I want to triple ditto Bio's response.
If you haven't yet, I urge you to read our Health Pages located in the upper right hand corner. There you will find an abundance of information on MS. The more you know about MS, perhaps you would be in a better position in making decisions for yourself. Be sure to read the McDonald criteria section - it explains the criteria used in diagnosing MS.
In my opinion, you should pursue further evaluation by a competent neurologist. Your neuro is a jerk for withholding medication that obviously helps you. Given your history, you should be monitored at least every six months.
Be well and be informed. Ask as many questions as you like. There are a few members here who have disappearing lesions. Also, I would suggest you read Quix's post entitled Lies My Neurologist Has Told Me - something like that. It might be on the 2nd page now, but has valuable in sight. Here it is:
http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879 ;
Would you happen to know if your MRI's were done with "MS Protocol?"
I want to triple ditto Bio's response.
If you haven't yet, I urge you to read our Health Pages located in the upper right hand corner. There you will find an abundance of information on MS. The more you know about MS, perhaps you would be in a better position in making decisions for yourself. Be sure to read the McDonald criteria section - it explains the criteria used in diagnosing MS.
In my opinion, you should pursue further evaluation by a competent neurologist. Your neuro is a jerk for withholding medication that obviously helps you. Given your history, you should be monitored at least every six months.
Be well and be informed. Ask as many questions as you like. There are a few members here who have disappearing lesions. Also, I would suggest you read Quix's post entitled Lies My Neurologist Has Told Me - something like that. It might be on the 2nd page now, but has valuable in sight. Here it is:
http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879 ;
I know from reading on here that a clean LP does NOT mean no MS. In upper right hand corner are health pages. I think one of them covers this. And I agree with Bio NEW NEURO!! preferable a MS Specialist. Just ignoring it is crazy! Maybe he was smoking a little wacky baccy, LOL. Good luck, and......NEW NEURO.
Maggie
Maggie
Ok, so I'm not the only one thinking that seems nuts....
I can buy that its not MS, 2 clean LPs, no new lesions could be a strong defense in his case, despite what seems like strong evidence indicating it could be... but to just say "forget this ever happened" and not offer and ideas or support... that just seems ridiculous.
I can buy that its not MS, 2 clean LPs, no new lesions could be a strong defense in his case, despite what seems like strong evidence indicating it could be... but to just say "forget this ever happened" and not offer and ideas or support... that just seems ridiculous.
You go in with symptoms, you have an abnormal neuro exam, and you have midbrain and pons lesions that have come and gone, relapses and remissions, and this dumb*** tells you to go away and just forget about it? Pardon my French, but what the frak?
New neuro, new neuro, new neuro!
Bio
New neuro, new neuro, new neuro!
Bio
LuLu -- no... told me that I didn't really need it since there was nothing on the MRI
Wadeheather -- yah, I hear you. I tried explaining that I was open to a stress dx, but it made no sense give my stress was down and was proactive in getting help when it was up... guess they know more than me (rolling eyes)
Wadeheather -- yah, I hear you. I tried explaining that I was open to a stress dx, but it made no sense give my stress was down and was proactive in getting help when it was up... guess they know more than me (rolling eyes)
The stress dx goes right along with the headache dx in my mind - BS! Please seek another opinion.
May I ask what type of Neuro you have been seen by? Please don't tell me it was an MS specialist. Being told to go away and ignore these symptoms is not acceptable. Did the neuro at least give you more refills on the gaba and baclofen?
I'm so sorry you have been stuck in limbo like this - it justdoesn't seem fair to not have answers.
my best,
Lulu
I'm so sorry you have been stuck in limbo like this - it justdoesn't seem fair to not have answers.
my best,
Lulu
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