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Final Diagnosis - Odd Case?
Hi, I first had an "attack" of neuro issues in 2013 and back then, neuro exam and MRI all normal. Chalked up to "viral" and it subsided in 2.5 weeks. Fast forward 2 and a half years and another attack occurred. This one had sensory symptoms and vertigo lasting over 3 months before subsiding and I'm left with a tingly left foot. After making sure all of my insurances were in order, I finally went to consult with an MS neuro here in NYC.
She did a battery of neuro tests (all normal), blood work (normal), MRI with contrast of brain and spine (C-spine and T-spine) and showed some very tiny lesions in the spinal cord, but brain scan was totally clear. Their MRI machine was like a space ship, very high tech in this hospital. Radiologists saw "some cloudy areas but unspecific" but my doc had her panel of neuroradiologists in her practice consult, and they saw definitely at least 2 areas that were lesions and not "unspecified cloudiness due to maybe movement during MRI".
So, I have some spinal lesions, and that's it. No brain lesions at all during either of my two attacks. The spinal lesions could have been old from 2013 they can't tell as even the 2013 MRI's were done Tesla 3, they were not as good as what this hospital does now.
My doctor asked me to undergo a lumbar puncture to check for Oligoclonal banding. I did that Thursday, and ended up in the ER for a blood patch for a severe spinal headache, and that patch failed so I had to have a second one. All in all, not pleasant. But the spinal tap results were negative for banding. So my doctor will elect to just watch, rather than treat. Even though I have demyelinating lesions in my spinal cord, I still don't meet the criteria for MS.
My doctor said during the final consult (next month) they will probably throw my diagnosis in some "inflammatory myelitis" catch bucket and just watch me. She said she has a few people in her large practice with just spinal lesions only, and the ones with banding she treats, and the ones without banding she elects to watch and do periodic MRI's.
So my question is, is there anyone else out there with a similar tale? Spinal lesions only, everything else negative?
She did a battery of neuro tests (all normal), blood work (normal), MRI with contrast of brain and spine (C-spine and T-spine) and showed some very tiny lesions in the spinal cord, but brain scan was totally clear. Their MRI machine was like a space ship, very high tech in this hospital. Radiologists saw "some cloudy areas but unspecific" but my doc had her panel of neuroradiologists in her practice consult, and they saw definitely at least 2 areas that were lesions and not "unspecified cloudiness due to maybe movement during MRI".
So, I have some spinal lesions, and that's it. No brain lesions at all during either of my two attacks. The spinal lesions could have been old from 2013 they can't tell as even the 2013 MRI's were done Tesla 3, they were not as good as what this hospital does now.
My doctor asked me to undergo a lumbar puncture to check for Oligoclonal banding. I did that Thursday, and ended up in the ER for a blood patch for a severe spinal headache, and that patch failed so I had to have a second one. All in all, not pleasant. But the spinal tap results were negative for banding. So my doctor will elect to just watch, rather than treat. Even though I have demyelinating lesions in my spinal cord, I still don't meet the criteria for MS.
My doctor said during the final consult (next month) they will probably throw my diagnosis in some "inflammatory myelitis" catch bucket and just watch me. She said she has a few people in her large practice with just spinal lesions only, and the ones with banding she treats, and the ones without banding she elects to watch and do periodic MRI's.
So my question is, is there anyone else out there with a similar tale? Spinal lesions only, everything else negative?
I guess you wait for the LP results. It is possible to have only spinal lesions. There are not absolutes in MS. Each of us is different. If the MRI is not-conclusive the LP is your best bet. It just takes longer to diagnose with a non- conclusive MRI and non conclusive.
Alex
Alex
Hi Supermum! Yeah of course this is a weird case. What makes me feel like this second attack is different is that I feel mostly better after a few months but I'm left with a tingly foot which happened during the few months of "attack" the second time and didn't happen the first time. So it's a new thing. But overall I feel well.
My latest issue is the spinal headache from the lumbar puncture. Had two blood patches (first took and then failed). This is 10 days later and I'm feeling mostly well from the spinal headaches. My head pounds a bit when bending over or coughing and I have minor headaches that aren't a bother but wondering how the healing is from this? Like will these little lingering symptoms eventually go away? I'm flying Monday which will be 2 weeks after the second patch was done, any thoughts on if this could potentially cause an issue?
My latest issue is the spinal headache from the lumbar puncture. Had two blood patches (first took and then failed). This is 10 days later and I'm feeling mostly well from the spinal headaches. My head pounds a bit when bending over or coughing and I have minor headaches that aren't a bother but wondering how the healing is from this? Like will these little lingering symptoms eventually go away? I'm flying Monday which will be 2 weeks after the second patch was done, any thoughts on if this could potentially cause an issue?
1 Comments
I'm genuinely unsure if flying is a good idea whilst still experiencing residual spinal headaches, if your head still pounds bending over, imagine how painful that pounding could actually become with the fluctuating cabin pressures.
I once traveled with Trigeminal Neuralgia, as the plane took off so did the pain, i spent the entire flight rocking back and forth with tears streaming down my face, if i'd been given the option of jumping without a parachute to get the pain to stop, i kind of think i'd of taken it.
I would highly recommend you ask your doctor if/when you are okay to fly!
If you mean from the LP, full recovery is usually within a few days, needing a blood patch or 2 can potentially extend recovery to a few weeks, longer than that is less common but it can sometimes happen.
If you mean from the spinal cord lesion, then unfortunately no one can really tell you if your "little lingering symptoms" will stay, improve, complete go away, return etc it honestly depends on too many factors to predict what might or might not happen. Sorry i know that isn't very informative but that's the best anyone could really say...
Take care........JJ
I once traveled with Trigeminal Neuralgia, as the plane took off so did the pain, i spent the entire flight rocking back and forth with tears streaming down my face, if i'd been given the option of jumping without a parachute to get the pain to stop, i kind of think i'd of taken it.
I would highly recommend you ask your doctor if/when you are okay to fly!
If you mean from the LP, full recovery is usually within a few days, needing a blood patch or 2 can potentially extend recovery to a few weeks, longer than that is less common but it can sometimes happen.
If you mean from the spinal cord lesion, then unfortunately no one can really tell you if your "little lingering symptoms" will stay, improve, complete go away, return etc it honestly depends on too many factors to predict what might or might not happen. Sorry i know that isn't very informative but that's the best anyone could really say...
Take care........JJ
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Hi Marissa, it's nice to see you again, gosh that sounds weird um nice to see you but i wish you were back to tell us you are medically foot loose and fancy free with all your troubles long long behind you, lol not sure that sounds any better but i'm sure you'll understand...
I think this means your original neuro back in 2013 was probably right with his idea that it was post viral Traverse Myelitis (TM), it makes sense because with TM it's very common for people to have flu-like symptoms or a respiratory infection, which you had along with all the bilateral moving neuro weirdness.
It's likely not going to progress, 'IF' you fully recovered from the initial attack and 2 years after the initial attack there is still only the old lesion evidence, and no abnormal clinical signs, I'm not even sure this would be classified as a second demyelinating attack with your clinical signs and your MRI's stable.....
Unfortunately your not alone, but it doesn't mean that it's going to develop into MS, or anything else some time in the future, but to say your completely out of the woods wouldn't be right because there could potentially be other autoimmune conditions that you either haven't been tested for or will become more apparent over time. Having said that though, and going back to the question of MS, the odds are in your favor for TM not to convert to MS, the MS-TM research conversion studies are indicating TM with normal brain MRI have a low rate of conversion to CDMS (https://www.ncbi.nlm.nih.gov/pubmed/16042216)
INFORMATION:
"Recovery from TM may be absent, partial or complete and generally begins within 1 to 3 months after acute treatment. Significant recovery is unlikely, if no improvement occurs by 3 months. Subsequent to the initial attack, approximately 1/3 of individuals recover with little or only minor symptoms, 1/3 are left with a moderate degree of permanent disability and 1/3 have virtually no recovery and are left severely functionally disabled. Most show good to fair recovery. The rapid progression of clinical symptoms, the presence of back pain, and the presence of spinal shock, as well as para-clinical evidence, such as absent central conduction on evoked potential testing and the presence of 14-3-3 protein in the cerebrospinal fluid (CSF) during the acute phase are often indicators of a less complete recovery.
TM can be the presenting feature of MS. In individuals with acute partial transverse myelitis and normal brain MRI, about 10-33 percent develop MS over a five to ten year period. If the brain MRI shows lesions, the transition rate to clinically definite MS is known to be quite high, in the range of 80 to 90 percent within a few years. Those who are ultimately diagnosed with MS are more likely to have asymmetric clinical findings, predominant sensory symptoms with relative sparing of motor systems, MR lesions extending over fewer than 2 spinal segments, abnormal brain MRI, and oligoclonal bands in the CSF."
https://rarediseases.org/rare-diseases/transverse-myelitis/
"Most cases of ADEM and TM are considered monophasic. It is important to have regular appointments with a neurologist to monitor the progress of the disease, if any. Over time and depending on symptoms, a yearly exam might be sufficient for many people. The symptoms from these disorders can be quite challenging to manage and can change over time. Other specialists should be considered in consultation with a neurologist and general practice physician or pediatrician (e.g., urology, psychiatry, orthopedics, and physiatry).
People with NMOSD, Recurrent TM, or recurrent ADEM are at risk for multiple attacks and should be monitored more closely. People with these disorders will likely receive medication to either diminish the chance of another attack, or lessen its severity should it occur. It is important that a definitive differential diagnosis from MS be made by a physician. The MS treatments (i.e., Avonex, Betaseron, Copaxone, Gilenya, Rebif, and Tysabri) have not proven to be effective in the treatment of people with NMOSD or Recurrent TM and in some cases may cause more harm than good. Most often, people with Recurrent TM or NMOSD are considered for immune suppressant therapies. Which therapies a person is placed on is based entirely on the clinical judgment (experience) of the physician, combined with individual needs.
https://myelitis.org/living-with-myelitis/disease-information/#sub_menu1
"Transverse Myelitis (TM) is an immune-mediated inflammatory attack of a person’s spinal cord. Sometimes the inflammation has no clear cause and is referred to as Idiopathic TM. The majority of these cases are probably post infectious events, but this can be difficult to prove. In general, individuals with Idiopathic TM do not have recurrences or future inflammatory events. At other times, TM is part of a larger autoimmune process, such as NMOSD, MS, Sarcoidosis, Sjogrens Syndrome, Lupus, or ADEM. When presenting with TM, clinical care should focus on reducing inflammation acutely and trying to determine if there is an underlying cause."
https://myelitis.org/living-with-myelitis/disease-information/#sub_menu1
If your still with me after getting through all that :D what i would definitely recommend is you consider getting an appointment with a neuro that specialises in TM and getting a TM specialists opinion on if the return of your TM symptoms was a second TM attack 'and or' if this could be indicating that one of the TM associated autoimmune conditions is whats going on!
HUGS.....JJ
I think this means your original neuro back in 2013 was probably right with his idea that it was post viral Traverse Myelitis (TM), it makes sense because with TM it's very common for people to have flu-like symptoms or a respiratory infection, which you had along with all the bilateral moving neuro weirdness.
It's likely not going to progress, 'IF' you fully recovered from the initial attack and 2 years after the initial attack there is still only the old lesion evidence, and no abnormal clinical signs, I'm not even sure this would be classified as a second demyelinating attack with your clinical signs and your MRI's stable.....
Unfortunately your not alone, but it doesn't mean that it's going to develop into MS, or anything else some time in the future, but to say your completely out of the woods wouldn't be right because there could potentially be other autoimmune conditions that you either haven't been tested for or will become more apparent over time. Having said that though, and going back to the question of MS, the odds are in your favor for TM not to convert to MS, the MS-TM research conversion studies are indicating TM with normal brain MRI have a low rate of conversion to CDMS (https://www.ncbi.nlm.nih.gov/pubmed/16042216)
INFORMATION:
"Recovery from TM may be absent, partial or complete and generally begins within 1 to 3 months after acute treatment. Significant recovery is unlikely, if no improvement occurs by 3 months. Subsequent to the initial attack, approximately 1/3 of individuals recover with little or only minor symptoms, 1/3 are left with a moderate degree of permanent disability and 1/3 have virtually no recovery and are left severely functionally disabled. Most show good to fair recovery. The rapid progression of clinical symptoms, the presence of back pain, and the presence of spinal shock, as well as para-clinical evidence, such as absent central conduction on evoked potential testing and the presence of 14-3-3 protein in the cerebrospinal fluid (CSF) during the acute phase are often indicators of a less complete recovery.
TM can be the presenting feature of MS. In individuals with acute partial transverse myelitis and normal brain MRI, about 10-33 percent develop MS over a five to ten year period. If the brain MRI shows lesions, the transition rate to clinically definite MS is known to be quite high, in the range of 80 to 90 percent within a few years. Those who are ultimately diagnosed with MS are more likely to have asymmetric clinical findings, predominant sensory symptoms with relative sparing of motor systems, MR lesions extending over fewer than 2 spinal segments, abnormal brain MRI, and oligoclonal bands in the CSF."
https://rarediseases.org/rare-diseases/transverse-myelitis/
"Most cases of ADEM and TM are considered monophasic. It is important to have regular appointments with a neurologist to monitor the progress of the disease, if any. Over time and depending on symptoms, a yearly exam might be sufficient for many people. The symptoms from these disorders can be quite challenging to manage and can change over time. Other specialists should be considered in consultation with a neurologist and general practice physician or pediatrician (e.g., urology, psychiatry, orthopedics, and physiatry).
People with NMOSD, Recurrent TM, or recurrent ADEM are at risk for multiple attacks and should be monitored more closely. People with these disorders will likely receive medication to either diminish the chance of another attack, or lessen its severity should it occur. It is important that a definitive differential diagnosis from MS be made by a physician. The MS treatments (i.e., Avonex, Betaseron, Copaxone, Gilenya, Rebif, and Tysabri) have not proven to be effective in the treatment of people with NMOSD or Recurrent TM and in some cases may cause more harm than good. Most often, people with Recurrent TM or NMOSD are considered for immune suppressant therapies. Which therapies a person is placed on is based entirely on the clinical judgment (experience) of the physician, combined with individual needs.
https://myelitis.org/living-with-myelitis/disease-information/#sub_menu1
"Transverse Myelitis (TM) is an immune-mediated inflammatory attack of a person’s spinal cord. Sometimes the inflammation has no clear cause and is referred to as Idiopathic TM. The majority of these cases are probably post infectious events, but this can be difficult to prove. In general, individuals with Idiopathic TM do not have recurrences or future inflammatory events. At other times, TM is part of a larger autoimmune process, such as NMOSD, MS, Sarcoidosis, Sjogrens Syndrome, Lupus, or ADEM. When presenting with TM, clinical care should focus on reducing inflammation acutely and trying to determine if there is an underlying cause."
https://myelitis.org/living-with-myelitis/disease-information/#sub_menu1
If your still with me after getting through all that :D what i would definitely recommend is you consider getting an appointment with a neuro that specialises in TM and getting a TM specialists opinion on if the return of your TM symptoms was a second TM attack 'and or' if this could be indicating that one of the TM associated autoimmune conditions is whats going on!
HUGS.....JJ
Hi there,
What a roller coaster ride you've been on! My story is similar, but not exactly the same. I had a double vision episode after my second child was born in 2008. Brain MRI came back clear and it resolved in a few weeks - chalked it up to stress.
I had the same symptoms return in Sept 2014 PLUS dizziness and oscillopsia. MRIs of all 3 areas came back clean, blood work prettty normal, EP tests were fine...ugh. I declined a lumbar puncture and chalked it up to stress. It took 3 months to fully clear up.
Sept 2014 brought an entirely new neurological glitch. Initially diagnosed with partial myelitis - this time the brain and cervical spine MRIs showed lesions. I did the LP: 14 o-bands. Crap...RRMS Dx was official.
So, I think it's prudent to monitor your case. Hopefully you don't show any new lesions (o-bands are not always present in MS), but if you do, early treatment is supposed to really help slow further progression.
I'm glad you saw a specialist right away.
All the best,
Cheryl
What a roller coaster ride you've been on! My story is similar, but not exactly the same. I had a double vision episode after my second child was born in 2008. Brain MRI came back clear and it resolved in a few weeks - chalked it up to stress.
I had the same symptoms return in Sept 2014 PLUS dizziness and oscillopsia. MRIs of all 3 areas came back clean, blood work prettty normal, EP tests were fine...ugh. I declined a lumbar puncture and chalked it up to stress. It took 3 months to fully clear up.
Sept 2014 brought an entirely new neurological glitch. Initially diagnosed with partial myelitis - this time the brain and cervical spine MRIs showed lesions. I did the LP: 14 o-bands. Crap...RRMS Dx was official.
So, I think it's prudent to monitor your case. Hopefully you don't show any new lesions (o-bands are not always present in MS), but if you do, early treatment is supposed to really help slow further progression.
I'm glad you saw a specialist right away.
All the best,
Cheryl
2 Comments
I should mention that my MS neuro thinks there was a brainstem lesion that was overlooked on my 2014 MRIs, which may have accounted for my double vision issues.
Thanks Cheryl!
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