This story is long so please bear with me. I'm a 29 year old male with no significant medical history in good physical shape.
So I started having neurological symptoms over a year and a half ago. I woke up one morning with numbness and tingling down my left arm. My left hand was significantly weaker (difficult opening doors, etc) and I had these electrical pains down the arm. This persisted for a few months and eventually my left leg began to go numb and had the tingling sensation as well. I have a history of migraines that flared during this period.
My doctor did an MRI and the radiologist thought I had a syringomyelia in my cervical spine (sort of like a cyst filled with cerebrospinal fluid) I was sent to a neurosurgeon with the idea of removing it. He then did an examanation and after looking at my MRI, he thought i had a demylenating process and that it was a lesion and not a syringomyelia.
From there I was sent to an MS specialist. I had evoked potentials, more mris, and a lumbar puncture done. The evoked potentials were in the range of normal with the exception of my right eye which was in the demylenation range. However my right eye is amblyopic so there was some question of the effectiveness of the test. I should note during this time period, my vision declined and I went from 20/20 vision to needing glasses. The MRI of my brain turned out normal and the MS specialist was unsure whether or not the spot in my c-spine was a lesion. The lumbar puncture turned out normal with just a couple of white blood cells in it.
The MS specialist was very frustrating to deal with. I never got in without at least a 2 hour wait and the last time I saw him he was on his cell phone most of the time. He did observe that my reflexes were way too fast and reversed in the case of my left foot. My balance was poor in tandem walking. He wasn't sure if I had ms but wanted to continue with MRIs every few months.
I became annoyed with how long things were taking (6 months at that point with no diagnosis or treatment) and went to the Mayo to expedite things. Their radiologists again seemed confused about the spot in my c-spine saying it was a swelling in the spinal canal (maybe lesions, maybe syringomyelia). The evoked potentials were normal but an EMG showed some permanent damage in my left foot that the doctor thought was likely caused by some trauma.
The Mayo thought it was unlikely that I had MS and it was likely i had some sort of virus that would go away shortly and predicted my symptoms would not persist.
Then about 7 months later the problems came back again. Loss of strength and sensation in my left foot (I feel like I'm dragging it), numbness all over my left side, headaches behind my right eye, exhaustion, and particular problems with heat. My new MRIs haven't shown any significant changes although the neurologist at the Mayo said clearly I'm having some problems because my reflexes are all messed up, my balance is off, and I've lost strength in my left foot and hand. At first she was certain it was demylenation but the healthy MRIs shifted her opinion.
Obviously, I don't want a diagnosis of MS. That said, I've been going on in this dance of whether or not it might be MS for about 18 months now without any treatment beyond physical therapy. I've been tested for HIV, Lupus, syphillis, lime disease, etc. The testing has really been exhaustive and nothing has come up except some nerve damage, this dark spot in my spinal cord in my c-spine, and some vision loss that they think is unrelated.
I'm wondering what my next step should be. I don't want to continue feeling sick and I'd like some kind of answers. Any advice on what I could look into for solutions or different specialists would be very appreciated.
Hi, and welcome to the forum. I can imagine how frustrated you are. I am going to restate what you have told us to see if I understand and also ask for some new info.
18 months ago you had the fairly sudden onset of numbness, tingling and weakness in your left arm. This persisted for several months - then I presume it improved. Did the symptoms go completely away?
Then your left leg became involved with numbness and tingling. Did this overlap with the problems with the arm? How long did the leg business last? During this time you got an MRI of the cervical spine which showed some swelling of the cord and a possible lesion. Neuro thought this was a CSF-filled cyst or syringomyelia. Neurosurgeon said it looked more like a demyelinating lesion.
Then the MS neuro steps in with a bunch of tests the only one of which that was abnormal was the VEP of the right eye. The latency was consistent with demyelination. but doc was confused because of the presence of decreased vision due to amblyopia. What did the neuro find on the complete and thorough neuro exam? This doc didn't have an opinion about the C-spine thingy either. This guy seemed mammouthly disinterested and was rude.
BTW - What level is the cervical thing at? You call it a dark spot. Generally, the lesions we see in the spinal cord are light spots seen on the T2-series of slices. A syringo--- would show as dark.
Off to the Mayo - my least favorite and least-respected place for the diagnosis of anything but perfectly classical MS. They WORSHIP the MRI and won't diagnose without significant MRI lesions. However, they did note hyperreflexia, some ataxia, weakness, but were willing to write that off since the MRI was "normal".
LP is normal. Did you have any O-Bands at all, even less than the four the mightly Mayo requires?
Since you have been seen by three neurologists, I assume the work up for MS mimics has been through and you list things like infectious diseases. Have you also had B12, Vit D, ANA ESR, ACE, Anti-Phospholipid Antibody?
So everybody is saying let's wait until your brain lights up.
Certainly, you have what appears to be sufficient clinical evidence to diagnose MS if the rule outs have been thorough.
You have had at least two clinical attacks of symptoms. The first with the left arm. The left leg might have been part of that first one, or might stand alone depending on the timing. But, the problems (at least some of them) recurred. Hence, at least two attacks.
And you clearly have more than two clinical lesions which are in different areas. A clinical lesion is an abnormality on exam that points to lesions in the CNS. Brisk reflexes speak to a lesion in the spinal cord. Weakness, abnormal VEP, inability to tandem walk.
I can't believe that no one is willing to name the cervical lesion. Is it really so small? Have they repeated the MRIs of the spine? 5% of people with MS have only spinal cord lesions. Syringomyelia should have CSF in the center. What strength MRI was used to image the spine? In your case, it needs to be on the highest magnet strength (at least a 3T) with the best software and at the best imaging center around and in a closed machine. The spinal cord is very hard to image well. You could ask to have a radiological second opinion and have a different group of neuroradiologists read the images.
Now, the VEP is often abnormal in amblyopia, but I think it is abnormal in a different way than in optic neuritis (MS demyelination). This is not my field of expertise, but as I understand it, the "amplitude" of the signal wave is decreased, but I don't think the speed of the conduction is decreased. How delayed was your right eye? (What was the P-100?) You should see a good, neuro ophthalmologist.
The negative LP says nothing. The LP is helpful only when it is positive with 2 or more O-Bands or an elevated IgG Index.
We have had really good luck with Drs. Herbert and Kister and group at NYU. This is a clinic that thinks outside the box and is not rule-bound.
The truth is that the MRI, even the powerful ones are imperfect tools that probably do not nearly show all that is going on in MS. The other truth is that few people get diagnosed with a truly normal MRI, even though the literature and studies continue to show that as many as 5% to 10% of people have negative MRIs at the beginning of their disease. the National MS Society even states this, but so do numerous other studies.
Any neuro who claims that the MRI shows the whole truth of this disease is a fool. That doesn't really help us here though.
So, I recommend getting a radiolgical 2nd opinion, a neuro-ophthalmological 2nd opinion, maybe a better MRI of the spine and consider someplace like NYU.
These are my initial thoughts. Your story is certainly consistent with MS, but there is a strong need to clarify this cervical spine thingy. Also, make sure that they have done EVERYTHING humanly possible to rule out Lyme Disease. It can mimic MS perfectly.
there is absolutely nothing else I can add to Dr. Q's Q&A here - she covered a lot for you to absorb. Just let me say welcome to our community and I hope you will find the information useful as you struggle to get answers.
Talk to a massage therapist. It sounds like a nerve entrapment in the muscle tissue. This is something a good therapist will be very well versed in. It'll be half the cost of the doctors offices, and less painful. I would explain everything to them, and make sure you are completely honest. They'll have several recomendations and be willing to work with your comfort levels. Make sure you give honest feed back on the pressure. Cranial/Sacral therapy might help with the migraines, as well as an injury protocol for the scalenes, neck, and trapezius. The scalene's should take care of the arm, as for the vision. . . cranial might help with that as well. I'd have them work your suboccipitals, and of course the rest of the neck.
Basically get a full assesment. Express your biggest concerns first, and be as detailed and specific as you can.
Hi Deb, welcome over here on the MS forum. I agree that massage therapy is beneficial as a complimentary therapy, but the problem for this person needs to be identified as well.
I couldn't help but check your other posts since I had not seen you here before, and I see that you have posted on multiple forums in the past 30 minutes that you recommend massage for just about everything. Are you in the therapy business? I just had a wonderful 90 minute positional release treatment yesterday - so I do agree on the worth of them.
But before we get on that table and destress, the cause of our problems must be identified so no harm is done.
Wow! Thanks for the very fast response and the incredibly detailed and thoughtful words.
To answer your questions: The symptoms in my hand gradually diminished after maybe 6 months but I don't think I ever fully regained my strength - this was something the neurologist at the Mayo noticed as well. I thought I was back to normal but they were easily able to push that hand around during the examination. I should note the work I do is very physical so it's unusual for me to have problems with strength of balance (I'm trained in ballet and modern dance).
The leg problem started about two months after the hand (about April 2009), while the hand was still going on. That persisted for 4 months if I had to guess and seemed to go back to normal until this past May when it popped up again.
The VEP on my right eye "showed prolonged P100 latency on the right." "P100 > 200 OD, 93 OS." The first MS specialist I saw pre-Mayo noticed problems with reflexes and balance in tandem walk. "Babinski is downgoing on left, upgoing on right." His recommendation was to follow up in 3 months and do another MRI of the c-spine.
The spot on my MRI is actually light - sort of like an oval. It's located near C6-7. T2 is what it was recorded at according to the notes - you'll have to forgive me - I don't understand all the medical jargon on the notes I'm looking at.
No oligclonal bands in my LP which was done in March 2009.
In terms of neurologists - so far I've seen the MS specialist, the neurologist at Mayo (as well as a second neurologist there that contributed to her exams), and a neuropthamologist at the mayo. I know bloodwork was done twice. For sure Ace level, connective tissue cascade, HIV, paraneoplastic panel, and NMO antibodies, and CBC (again not sure what all of these are - I'm quoting notes I have).
The mayo VEP was apparently normal "P100 of 106 OD, 100 OS." Whatever that means. Their neuropthamologist didn't see signs of MS. The field vision test was abnormal in the right eye but that could just be my amblyopia.
My c-spine has been MRI-ed three times now. According to the Mayo radiologist: "Cervical spine exam demonstrates a short segment focus of central cord T2 signal hyperintensity most prominent at the C6/C7 and C7 levels that is most compatible with a mildly prominent central canal of the spinal cord. The central canal of the spinal cord is of smaller callber superior and inferior to this." Their neurologist before consulting with the radiologist had said "When I look at the MRI scan of the cervical spine, there is a lesion at around C6 or so on the axial. On the axial cuts, this looks like a small syrinx, but then on the sagittal cuts, it looks a bit unusual like this may not be the case. When comparing the February to the March study, there may be some interval improvement. With March study, one wonders about some subtle enhancement, and I wonder about some enhancement along the anterior surface of the cord."
The brain was normal both times it was done. The thoracic spine "has a slight prominence of the central canal in the spinal cord from the top of C7 to the bottom of T2. The anterior spinal artery is seen anterior to the cord at this level. However theire is no abnormal enhancement of the spinal cord itself."
I read the links you showed me and I know it's possible to have MS without lesions showing up on an MRI. I'm a bit confused by what you say when you say, "Certainly, you have what appears to be sufficient clinical evidence to diagnose MS if the rule outs have been thorough. "
Do you mean that with the clinical evidence alone (unusual reflexes, reversed reflex in the foot, balance issues in tandem walking, less sensation in certain areas with vibration, sharpness, and temp) that they could diagnose regardless of the evoked potentials, mris, and LP?
I have a followup on Tuesday along with one last bout of evoked potentials. I'll be sure to ask more about lyme disease (I know i've been tested twice at this point) and to ask about vitamin deficiencies. I'm also going to look into seeing the folks at NYU (I'm Manhattan based anyway which also makes lyme disease slightly unlikely).
ps. I apologize for posting this in the MS forum since I'm not diagnosed with it. I just wasn't sure where exactly to put this and figured this might make sense since it's the primary thing the doctors are looking at.
Hi again, the MS forum is exactly the right place to be posting this - the group here is very knowledgable on the subject and more than willing to share.
Back about 25 years or so ago, the doctors didn't have the luxury of MRI machines doing the work for them - they had to use their brains and their observation skills and think through the dx. It is hard to find, but there are still neurologists, like the ones at NYU, who will listen to the patient's history, do their own clinical evaluation, and come up with a reasonable dx of MS without the presence of lesions on MRI's
We know that lesion activity in MS begins very early and is very, very small. We don't necessarily have the equipment to image the damage at that tiny level. Nor do the machines we have available, necessarily have the best imaging software or technicians/radiologists to read them.
I hope some of this is making sense - Q is the doctor. I'm more the social committee!
Manhatten? You're in the heart of the dance world, right? Good luck on Tuesday and keep us posted, ok?
More than half of our members here on the MS forum are still undiagnosed. Not all will end up with an MS Dx. Some will have mimics.
When I said that it might/could be possible to diagnose you with the info you have I was speaking more theoretically than pragmatically. The confident and smart neuro can and sometimes will diagnose MS based on the clinical picture, but without MRI support. In reality this doesn't happen often, but it does happen. Also, no one on line can really know how thorough the search for "other reasonable explanations" has been in any given person. We have members who have been diagnosed without any MRI lesions.
In your case, it sounds like the clinical picture is sufficient. However, the question remains whether the cervical problem is mechanical (pressure from an enlarged cyst) It doesn't sound like the thingy is very large so I have trouble considering it to be the cause of such diffuse symptoms.
The clinical picture is made up of the symptoms and their pattern and of the results of the neurological exam. If you read the opus on the McDonald Criteria you'll see that the first scenario is
1) two or more clinical attacks (you have this)
2) two or more clinical lesions (abnormalities on exam) - you have these
3) thorough rule out - this sounds thorough, I can't really know
MS is a diagnosis of exclusion. The Criteria recommend ,ooking to the MRI for consistent lesions. One lesion is plenty. Two is great. The lesions don't have to be classic, just consistent.
So, depending on whether the C6-7 thingy is a cyst or a lesion, yes you could be diagnosed now by someone who was willing to stand on their clinical judgement. My saying that is not the same as saying you have MS. From my standpoint, there is too much I don't know about all that has been done.
I'm hedging here, because I don't have all the facts. But, yes, I think you are close to qualifying for a "Very Probable MS" in the hands of a gutsy Neuro. There is no "need" to have a positive VEP or LP to be diagnosed with MS.
Do you know the strength of the MRIs used to do your imaging?
My sx have cycled on and off for 8 years now. I began seeing a neuro specializing in demylinating disease in March of this year.
Her preliminary diagnosis is that I have degenerative disc disease in both the lumbar and cervical spine. I also have meningeal cysts in both the lumbar and thoracic spine. The MRI of the cervical spine was inconclusive with respect to the cord and another MRI will be done on a higher resolution machine after 3 months.
DDD can cause weakness, tingling and balance problems, as well as hyperreflexia and other neurological symptoms. This does not explain the numerous lesions appearing on the brain, which are thought not to be MS due to their size, shape and location. Possible explanations are smoking, a clotting disorder and erratic blood pressure.
My next MRI should be done within a month with a follow up visit to the neuro at the end of August.
I just wanted to say that you are very welcome on this forum. You have had extensive tewsting and deserve some answers. You hare already had the insight of our wonderful Quix who helps so many people with their medical questions. I hope that you get some answers soon and let us know how you get on.
Thanks for the words of encouragement as well as the medical advice.
My understanding is the strength of the MRIs was T2 in 2009. They may have used something more powerful during the last session of them on Thursday. I haven't seen the actual images that the Mayo has taken this year or last year so I'm not completly sure what the strength is, etc.
I have a followup at the Mayo as well as another round of evoked potentials on Tuesday. They had considered doing another LP but decided not to. Thanks for the advice - it'll help me shape the questions I want to ask my doctor.
I just wanted to say welcome to the club. :) I've been having sx for 8 years. My MRIs have been perfectly clear every time, even the last one on the 3T. But, my neuro says clinically, I fit the bill. So, we're watching and waiting for the time being.
I stumbled across this forum and noticed it's from 2010 but I'm hoping it's still being monitored because I've had a somewhat similar experience to CRNY.
I am a 29 year old male in good health. Starting 7 months ago, I began to have some strange neurological symptoms. The first was a minor pins-and-needles feeling in my left hand that lingered for a few days. It went away for a few weeks, then came back again. Another few weeks, it came back again, but this time with a tingling feeling in my left cheek as well. Another few weeks later, both came back, and my left toe was tingling and the back of my left leg also tingled. These tingles are not like pins and needles - more like a soft tickle, if that makes sense.
The coming and going then changed into a more consistent low-grade range of mostly left sided symptoms (although my right cheek/jaw area sometimes tingles as well). Today, my left arm and leg "feel" weak. I use quotes because they're not actually weak, as I am able to continue playing basketball and tennis and hike as I always have. It's more of a heavy feeling I would say, and sometimes my left leg muscles get sore earlier in a workout than they normally would. It also sometimes feels like my left foot is dragging, but it's not. That heavy feeling...
I no longer have the pins and needles in my left hand and my the tingling in the left side of my face is replaced by more of a small numb patch in the jaw - with an intensity that varies during the course of the day and the week, though never very intense. I also have this periodic feeling of pressure in the left side of my lower abdomen that makes me feel like I need to urinate, even though my urinary patterns continue to be perfectly normal (i.e. no pain, infections, incontinence or urgency). Just pressure, as if someone is pressing on the left side of my bladder. This comes around for a few days every couple weeks. My GP and neurologist have never heard of this last bit.
I went through a battery of blood work, checking for everything from Lyme to HIV, B12 level, and other stuff. Everything was negative, although my B12 level was on the lower border of normal (200 on a scale from 200-900). My doctors doubt my symptoms are due to B12 deficiency, although I have read about people with similar borderline levels with various symptoms. I have been taking oral B12 supplements (1500 pcg) and got restested and the level is up to 500, yet the symptoms persist.
I also had a neurological exam, which was reported to be fine. Neurologist checked for reflexes, walked heel to toe, vibrating tuning fork, etc etc. I had an MRI of the brain on a 1.0T machine which was clear and an MRI of the c-spine on a 1.5T machine which was also clear. I was not aware of higher power machines at the time, although I read that 3T has only been shown to identify about 25% more lesions than 1.5T. Not sure if that's anecdotal or actual fact. I had evoked potential tests done, and were all normal except my left leg. My neurologist said in the absence of any other abnormalities found, he sees no reason to worry about it since EPs can be very sensitive.
He said if I wanted to, I could proceed to have a t-spine MRI and a lumbar puncture, but said he really doubted they would show anything abnormal given the lack of findings to date, and since the common denominator of my symptoms seem to be the brain. I'm in no rush to subject myself to more testing, but am frustrated and anxious about what is going on. I'll admit I'm prone to hypochondria (and now, apparently, cyberchondria), and am trying to tell myself, listen, all those things in the past you were concerned about didn't amount to anything, so don't worry about this either.
My worst fear naturally is MS, but I don't seem to meet any of the criteria - just this consistent, oscillating, non-debilitating left side sensation that's been a daily part of my life to some extent for more than 5 months now, with a steady addition of symptoms along the way. No abnormal fatigue, dizziness, vertigo, heat sensitivity, or other common MS symptoms. I understand that MS usually presents itself with distinct recurring attacks which last on average a week, but I'm going on 7 months total with this nonsense.
I'm trying to convince myself this is Lyme disease, since I do spend a good deal of time outdoors and I live in the Northeast, and have read that the tests can sometimes produce false negatives (I had ELISA and Western Blot done), and that symptoms can vary wildly from person to person, can come and go, can be strange, and can mimic MS.
Is it also possible that there are simply cases of unexplained sensations? My neurologist said he says patients everyday who report strange sensations who end up having nothing wrong with them. Is there necessarily a reason to worry?
Any thoughts? Thanks in advance for attempting to shed some light!
Correction to my previous post - the 3rd to last paragraph should say, I understand that attacks last on average a few weeks, not one week. I understand there's a great deal of variation between patients, but I haven't read anything about 7 months, especially as a first attack.
hey- thanks for this. this potentially helps me. my symptoms.
severe pins and needles, not just minor. and it's not happening now but for significant periods of time i had complete arm numbness upon wakeup
gait disturbance is pretty much permanent. i can't walk normally anymore.
i walk with a cane but it's not enough.
severe nerve damage in left thigh, and left hand. declined ability to use left hand. hairbrushing, stuff like that isharder.
complete bladder incontinence, wet myself at least once nightly, avoid fluids entirely and it still happens.
one episode was with random severe muscle weakness, and my bladder just automatically emptied without any voluntary control.
i noticed my arms and everything went weak at that point as well.
when i was in my mid 20s i was in new orleans for mardi gras and i kept falling all over the place, in the street, everywhere, and eventually fell to my knees and cried from the pain of walking.
the falling seems retrospectively unusual.
cognitive recall is horrible for me, and i cant make a timeline. ifim going to go up to you and tell you to read a book i will forget that by the time i see you and spend five minutes wondering what i was going to tell you. this will happen frequently.
memory and timeline skills are not good.
blood test- b12 deficient, vit d deficient.
no stds of any kind.
on 1000mcgs of vitb12 per day and one monthly injection and 50k mcgs vtd per week, and it seems to be making my nerve pain explode.
my mri of my brain was squeaky clean.
getting my spinal mri in the next couple of week-s just my lumbar.
after that, i'd like to test for lime, babesiosis, and CIDP. any other ideas for stuff to test? i know it's not nothing.
i thought ms because, well, it looks so damn like it, and multiple family members including my mom have ms.
i guess if theres no lesions, then it's nott that. but i know it's not nothing. any ideas to ask my doctor about?
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