MS or ALS or MG

[Phyllis2010]

I'm 60 years old. About 6 weeks ago I began to experience intermittent problems with my gait -- listing to the left & dragging my left leg. Sometimes I walk normally, sometimes people ask if I need help. the weekend of the Oscars I began to experience chills, shaking (like the flu without fever) and also increased thirst at night along with nocturia. I had an MRI 2 years ago which was normal. I had another MRI last week which was also normal except for unidentified bright spots which the neuro said were common in people with migraine, also weird vitamin deficiencies. I should mention my labs are beautiful (no thyroid problems, lyme, B12 vitamin deficiency etc). The neuro ruled out MS, Parkinson's, and brain tumor. I'm currently being worked up for Sjogren's Syndrome, vitamin abnormalities, and at my suggestion antibodies suggestive of metastatic cancer. The neuro also wants me to see an inner ear specialist. Since March 10th, the date of my first physician visit, I've lost 10 pounds!!!! My physician feels I have a neuromuscular or neurologic disease, not an autoimmune disease. Does anyone have any helpful insights?

[Phyllis2010]

Thank you so much for your intelligent feedback; this has really helped me in figuring out where to go from here. I do have a long history of migraine but developed ocular migraine 2 years ago, hence the first MRI, which in retrospect might be another check in the MS column. The reflexes in my legs are not hyperreactive. Diabetes has been ruled out, but not properly, because I cannot convince my PCP to run a 5 hour GTT.I have a history of anorexia so the weight loss could indeed be due to worry. You've also clarified the issue of these supposedly harmless age-related UBOs for me.I'm very frightened of having an LP. I'm planning to see a spinal specialist and determined to get a cervical MRI one way or another -- I cannot believe the Neuro didn't order it though my health insurance will only cover one MRI at a time. Also, I will see another Neuro for a second opinion, possibly an MS specialist. Once again, thank you!!!! I guess no one's in any hurry to get me out of limbo since I'd most likely have PPMS which does not respond to DMDs.

[Quixotic1]

I'm sorry I missed your request for an answer from me.

Certainly people at 60 years of age can have MS and they can have both spinal stenosis and degenerative disc disease.  When the two occur together it makes identifying the MS much harder.

In order for the herniations of the discs to be causing your problems they have to be impinging (causing pressure on) the anterior nerve roots.  Please remember that back problems are NOT my area of expertise.  The motor neurons run into the anterior root ganglions and the sensory roots run in the dorsal roots.  You don't complain of pain, which seems odd if this is all due to disc problems.  You only have gait problems, which imply weakness.  I'm glad you are seeing a spinal specialist.  You can ask about the nerve impingment and whether or not it explains motor problems only.

Also, it sounds like your gait problems come on rather suddenly.  This sounds more like MS, but, again I am not sure of that.

Vestibular disease gets more common as we age.  But, it is another check in the "possible MS" category.  I do recommend that you have vestibular testing (rather than just rehab) to see if there is evidence that your equilibrium problems are due to a central lesion (likely MS) rather than a peripheral (inner ear) problem.  You need a VENG and maybe Cpmputerized Posturography.

I see that the neuro does NOT think these back finding do NOT explain your symptoms.  Perhaps it is because of the things I just mentioned.  The referral for back rehab would be in order whether or not you have MS.  Those herniations need to be minimized.

Are the reflexes in your legs hyperreactive?  That would be due to a spinal cord lesion.

I am aghast that a cervical MRI has not been done.  Yes, get someone to order it and do it using the MS Protocol.

I don't think the night of flu-like symptoms means anything unless the symptoms have continued.  The wieght loss is very concerning.  Could it be due to loss of appetite due to woory over your health?  That need ongoing work up.  I hope diabetes has been ruled out.  I do not think that the paraneoplastic panel is conclusive that there is no cancer.  Please discuss this with your PCP.

Now, the UBOs.  Those are lesions with a name that makes them seem "okay".  That is not necessarily the case.  My UBO kept me from an MS diagnosis for 2 years at age 53 to 55.  Do you have a history of migraines?  If not how can we even discuss migraine disease being the cause of UBOs?  "A weird vitamin deficiency" in the US would be less common, I would think, than MS.  The UBOs must be left on the table if the spinal findings do not account (and they don't) for all your symptoms.

So those are my thoughts.  It's not that I think that you DO have MS, I just haven't heard the reasons that the rule-out process has really ruled MS out.

I hope this helps.  the things I recommend are the cervical MRI, maybe an LP, a second neuro opinion, see a neuro-otologist (vestibular specialist), and seeing a spinal specialist.

Quix

[Phyllis2010]

I'm in limbo and it's not a good place to be. You've been very helpful and I want to update you. Since my first post, Sjogren's was ruled out and the cancer antigens were normal. Although my PCP suggested a lumbar puncture, the neuro at NYU immediately ordered an EMG study instead which showed a pinched nerve and damaged muscle, and apparently ruled out ALS and myasthenia gravis which have distinctive patterns. Based on the EMG, he ordered an MRI of my lumbar spine. No lesions but it showed multilevel degenerative disease with disk herniations at the T12/L1, L1/2, L3/4 and L4/5 and spinal stenosis at the L3/4 and L4/5. I also had 3 bulging disks.The neuro feels that these findings don't explain my symptoms. But, why wouldn't they? It's a wonder I can stand at all. He has referred me for physical therapy; I guess he feels I don't have a neurological/neuromuscular disease. I know spinal stenosis is a PPMS mimic; however, I also know people with MS can have spinal stenosis. I visited my ENT to rule out vestibular disease and he suggested that I have an MRI of my cervical spine and visit the Balance Program at Rusk Institute. He feels if that also shows stenosis it might explain my gait irregularities. You people are very smart. Does this sound like MS or spinal stenosis or both? Or am I in limbo until something else like optic neuritis or lesions show up? Or, a 60 year old hypochondriac with an MS fixation. A friend is getting the name of a spinal specialist for me to help clarify whether it's spinal stenosis or MS from a different non-neuro perspective.

Here's my previous post: I'm 60 years old. About 6 weeks ago I began to experience intermittent problems with my gait -- listing to the left & dragging my left leg. Sometimes I walk normally, sometimes people ask if I need help. the weekend of the Oscars I began to experience chills, shaking (like the flu without fever) and also increased thirst at night along with nocturia. I had an MRI 2 years ago which was normal. I had another MRI last week which was also normal except for unidentified bright spots which the neuro said were common in people with migraine, also weird vitamin deficiencies. I should mention my labs are beautiful (no thyroid problems, lyme, B12 vitamin deficiency etc). The neuro ruled out MS, Parkinson's, and brain tumor. I'm currently being worked up for Sjogren's Syndrome, vitamin abnormalities, and at my suggestion antibodies suggestive of metastatic cancer. The neuro also wants me to see an inner ear specialist. Since March 10th, the date of my first physician visit, I've lost 10 pounds!!!! My physician feels I have a neuromuscular or neurologic disease, not an autoimmune disease. Does anyone have any helpful insights?

[Phyllis2010]

I'd appreciate it if you could comment on my case -- I lurk around this site and would like to get your feedback. Thanks

[Phyllis2010]

Lulu,
I'm in limbo and it's not a good place to be. You've been very helpful and I want to update you. Since my first post, Sjogren's was ruled out and the cancer antigens were normal. Although my PCP suggested a lumbar puncture, the neuro at NYU immediately ordered an EMG study instead which showed a pinched nerve and damaged muscle, and apparently ruled out ALS and myasthenia gravis which have distinctive patterns. Based on the EMG, he ordered an MRI of my lumbar spine. No lesions but it showed multilevel degenerative disease with disk herniations at the T12/L1, L1/2, L3/4 and L4/5 and spinal stenosis at the L3/4 and L4/5. I also had 3 bulging disks.The neuro feels that these findings don't explain my symptoms. But, why wouldn't they? It's a wonder I can stand at all. He has referred me for physical therapy; I guess he feels I don't have a neurological/neuromuscular disease. I know spinal stenosis is a PPMS mimic; however, I also know people with MS can have spinal stenosis. I visited my ENT to rule out vestibular disease and he suggested that I have an MRI of my cervical spine and visit the Balance Program at Rusk Institute. He feels if that also shows stenosis it might explain my gait irregularities. You people are very smart. Does this sound like MS or spinal stenosis or both? Or am I in limbo until something else like optic neuritis or lesions show up? Or, a 60 year old hypochondriac with an MS fixation. A friend is getting the name of a spinal specialist for me to help clarify whether it's spinal stenosis or MS from a different non-neuro prospective. Thanks for helping me.

[Phyllis2010]

I'm trying to get cervical/lumbar spine images to rule out spinal stenosis but the docs are resistant. I had to insist upon the cancer antigen tests.

[Lulu54]

Phyllis,
You are a wise woman to pursue the testing for the cancer - we have had two community members in the past year or so who thought they were dealing with MS and it turned out to be cancer - one with breast cancer the other with myeloma.  

I'm also wondering if you have had your cervical and thoracic spine imaged?  You could have lesions there.


Whatever it is with you, I hope you will feel welcome to come around here and spend more time getting to know this group.  

-Lu

[Phyllis2010]

Thanks. In fact, I have a history of anorexia and 6 days a week at the gym 2 miles with the dog but still losing more than 6 pounds is a concern. My fasting glucose level was 93 and the doc informed me that to lose that much weight it would have to be around 200. My first MRI was for the source of ophthalmic migraine (I've always had regular migraines) -- the first MRI was done on a different and less advanced machine and there were no bright spots then. The increased thirst could be Sjogren's, I suppose; the UBOs possibly MS but with the weight loss I'm afraid it might be ALS or metastatic cancer. Thanks for your concern.

[Lulu54]

Hi Phyllis, Welcome - this is a great community of very informed people and I'm sure someone will come along and be able to help with some specific questions and ideas.  

I am definitely not a medical authority but your weight loss concerns me.  Ten pounds in two weeks is an extreme weight loss, unless you're on a 7 day a week exercise and diet regiment.  

The ENT suggestion is a good one to follow through with - we can often have more than one problem at a time and sometimes we forget that not every symptom is necessarily connected with the next.

Anytime someone mentions increased thirst my first thought is diabetes - with all of the testing you've had performed I am guessing your blood sugar levels have also been checked.  The nocturia may be coming from your increased thirst if you are drinking more, but maybe not.  

I take it that this is not the first of the unexplained problems since you had an MRI two years ago- what were they looking for at that time?

Bright spots because of migraines is a common answer from doctors- we sometimes suspect they give that answer because they lack the desire to hunt further for the correct answer. Were there bright spots on your last MRI?

None of this is insightful as you requested; just my rambling.  Keep looking for those answers and I hope you will stay in touch with us here.

be well,
Lulu

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