Avatar universal

So Fed Up

After 18 years of "you have MS", "it's not MS", I am so tired of this game! I have seen countless neurologist, had countless MRI's, had a lumbar puncture that couldn't go worse if I tried - only to have the wrong tests run on it! I have been mostly asymptomatic, I have strange episodes, I go to the doctor, I get sent to a neurologist, get the scans and tests and then no diagnosis. There's clear PROGRESSIVE demylination on every MRI, but nobody has answers. Currently I'm battling numbness that comes and goes in my feet, knees and hands. I'm also experiencing horrible swelling and redness in my hands that isn't associated with the numbness. I probably would let this go this time, but my daughter had facial and hand numbness and her MRI showed a demylinating process as well. My current neuro is thinking it could be genetic, but she doesn't know what, and in the end, it could still be MS. My daughter has her first appointment next week with the same doctor. Does anyone have any suggestions? Stories of hope? Anything? I'm totally exhausted from research and I really feel like we deserve answers.
Thank you (and sorry for such a long rant)
10 Responses
5112396 tn?1378017983
You don't mention where you are located. Is it that MS is very uncommon where you are? Neurologists with less experience could be hesitant to commit to a firm opinion or diagnosis. Were any of your doctors MS specialists? It does seem odd that 18 years of medical history couldn't lead to some sort of consensus. I wouldn't hold my breath for your daughter getting any clearer of a picture if she's going to the same doctor. If I were you, I'd fire the fence-sitters, get copies of all my records, and aim for a specialist. I know that's a lot easier said than done as you've been given conflicting information and experienced a lot of frustration for years, but it seems like you could be getting better care. For the record, the redness and swelling would be unrelated to a neurological condition like MS. Unfortunately, one condition doesn't makes us impervious to having other issues simultaneously.
Avatar universal
I'm in Ohio, but lived in Kansas when this all started (I had blindness in one eye that lasted a couple of days). I do tend to get impatient with doctors when they don't know what else to suggest except to keep waiting, I tend to fire them shortly after that. I just really don't understand how everything points to MS until the very last minute. And I don't understand why I should have to continue to have expensive test after test when they have all been run before. I am putting serious effort into staying with this doctor beyond the 2 appointments that I've had, not doing my usual knee jerk of not returning, and I was hoping that if my daughter sees the same doctor, it would help them be more motivated to find answers. I have seen several MS specialists, including this neuro. Some were just dead set against any diagnosis from the start. I've even been accused of faking symptoms (as if I could fake an MRI?). I just don't know what to do if these results all come back negative. Should I seek help someplace like the Cleveland Clinic or Mayo?
I did realize the redness and swelling weren't likely related to the demylinating process, but it recently started on top of the previous numbness (which presents to me as REALLY cold. I don't even really know if it's what anyone else would consider numb).
I also have a highly stressful job and I'm very concerned that something will happen or symptoms will begin to be obvious while I'm working. I feel less coordinated in general, although I can't say that it's one specific thing that makes me feel this way. I do type for a living, and speed and accuracy are imperative in my field.
I guess I just need reassurance that waiting on this doctor is the right thing. I have been reading other posts and it seems like rushing doesn't get anyone results...
I would think that over this period of time there would be objective evidence of MS. If your neurologists have not explained specifically why they don't believe your MRIs offer sufficient evidence, I would demand a clearer explanation. They don't owe you a diagnosis, but they do owe you a concrete explanation for not diagnosing. A standard neurological exam can be very informative and doesn't involve costs in addition to the appointment itself. Have you had a recent neurological exam?
645800 tn?1466860955
All I can really say is hang in there. It took 21 years for me to get my diagnoses, and yes many Neuros along the way. MS does tend to run in my family (brother, father, me, niece, and male cousin) so mostly on the male side. So it really irked me when a Neuro would tell me I couldn't have MS because I'm not a 35 year old female.

5265383 tn?1483808356
I would say definitely hang in there.  I didn't doctor shop.  My mri had lesions but didn't scream ms according to neuro -- I figured each doctor would probably say the same thing and I would never have answers.  You continued to have expensive tests because each neurologist starts over.

It still took three years.  He followed my clinical issues and neuro exam, and after one false start in 2014, dxed me in January.  (Note my mri met McDonald criteria as far as DIT and DIS, back from the beginning, however the lesions were not characteristic of ms lesions).

How is your neuro exam?  What have your mris shown?

Lesions are not only found in ms -- there are many, many mimics.  This is why neurologists have to follow you.  Any time a neuro booked a follow up appointment after six months or a year, you were not dismissed, you were being followed, whether or not their words insisted "not ms".  It's a pretty ridiculous process.

I did see another neuro once  at the very beginning.  IN my experience, all neuros are dead set against ms from the very beginning, until they follow you and change their minds.

((( hugs)))

Avatar universal
I've had the basic exam (walk for me, pull against me, push against me), I've never had more than that. She said on Monday that the lesions aren't where you'd typically find them with MS (there's one section out of all of the lesions that would be typical). She also said that this MRI hasn't changed as dramatically as she would expect it to after 3 years (changes ebb and flow for me. I can have dramatic changes that gets everyone's attention over a 3 week period, or I can go a couple years with barely any changes). The only thing she mentioned at my first appointment was that there was loss of sensation in my hands during the exam - which I agree with.
And I do go back and forth with how I feel about waiting. Part of me (the part of me that houses logic and reason) is so grateful that she wants to be certain and make sure we aren't medicating something that isn't happening. The less reasonable side of me just wants answers and a plan of action. I probably go back to old feelings from bad experiences with other doctors any time she says "I'm just really not sure". It makes me feel like I have to do something to prove that I'm not kidding, I can tell a difference in my feet, knees and hands! I do actually like this doctor though and I've never said that about a neurologist before. I'm actually willing to do every test she orders, it's just frustrating thinking that the results could be as inconclusive as they have been in the past.
Thank you guys for taking time to answer and fit making be feel just a little less crazy about this!
667078 tn?1316000935
You need a good MS Specialist. Not all neurologists know about MS especially when you do not have classic symptoms and or test results. My diagnosis was 46 years after my first hospitalization for neurological problems. My first MRI showed Dawson's fingers which are classic to MS. All my other tests showed MS or negated other illnesses. It finally took a lumbar puncture with 12 o-bands to be diagnosed. I was sent to the Mayo in 1965 for neurological problems, then to Duke in 1970.
You need a good MS Specialist. Mine took 11 months for an appointment but it was worth it.
   On the bright side I was diagnosed in 2009 and I have had no real changes in condition. I only see a neurologist, a MS Specialist, once a year. I am still riding horses. I walk my dogs three times a week. I travel. I take medication for symptoms and I am basically okay. Most of my damage happened when I was a small child. In 1965 they knew nothing about pediatric MS. I grew up with double vision and other symptoms. I thought everyone was like me. My parents never explained my neurological problems to me. They thought I grew out of them. So in 2007 my Primary care doctor did a neurological exam and thought I had MS. Two years later I was diagnosed with MS. I went to a neurologist who was not a MS Specialist. She was sure it was not MS. Three said they thought it was MS but would not diagnose me.
   The odd thing is the same thing happened with cancer. I was sick for several years before they found the cancer. In retrospect after diagnosis I had every symptom but several doctors missed it. It is a guessing game sometimes for doctors.  You have to have the right specialist see you at the right time. Do not give up. If you hit a dead end find another specialist. I am the type of patient who does not push. When they say well it is probably just this I just take their suggestions. You know what is normal and what is not.

987762 tn?1331027953
Hi and welcome,

Something does seem to be wrong but to be honest, i'm confused as to why there wouldn't be the conclusive diagnostic evidence of RRMS after 18 years of tests......RRMS because over your time line you're indicating it's not been a continued slow progression of decline (PPMS) but more episodic with periods of stability, which if it was MS would be more suggestive of RRMS.  

You said...."There's clear PROGRESSIVE demylination on every MRI, but nobody has answers."

but your latest neurologist is saying...."She said on Monday that the lesions aren't where you'd typically find them with MS (there's one section out of all of the lesions that would be typical)"

Whilst lesion location is very important in MS to meet the MS diagnostic criteria (Mcdonald), if any lesion is lighting up with contrast that is specifically identifying them as 'demylinating' and creates a very short list of possible causes, with MS being the most common.

Your neuro is acknowledging you do have brain lesions but to my understanding she is basically saying you still don't actually meet the MS Mcdonald criteria because you only have lesion(s) in 1 out of the 4 MS specific locations (periventricular, juxtacortical, infratentorial,
spinal cord) and you need at least 2+ lesions in at least 2 of those specified locations.

I would assume if any of the lesions were identified as demylinating she'd be very focused on that telling aspect but from what you've mentioned, i get the idea that she's not specifically identifying the lesions as demylinating, if she's telling you your MRI is untypical for location and minimal changes in 3yrs. Do you know exactly what your MRI's have stated in regards to demylination and what specific locations these lesions are in?

You need to keep in mind that MRI's are not the same as suggestive-consistent symptoms or clinical signs of neurological abnormality, and whilst symptoms often "ebb and flow" in many medical conditions, when it comes to neurological conditions like MS there is typically corroborating abnormal clinical signs to the symptom the patient is describing, not every symptom mind you...

eg numbness is a very common subjective symptom in many medical situations, it means totally different things to the general public and unfortunately 'sensory' symptoms are very very common with mental health conditions.....in neurology what the patient describes are the clues to very different specific sensory dysfunctions and there are different tests to corroborate.

Paresthesia (altered sensation like tingling, pins and needles) has a much broader causation but an actual loss of sensation (anesthesia or hypesthesia), burning or freezing cold (Dysesthesia) are 'more likely' clinically representing true damage to sensory pathways in the nervous system which can still be either peripheral or central causation.

You mentioned that your currently dealing with "numbness that comes and goes in my feet, knees and hands......also experiencing horrible swelling and redness in my hands that isn't associated with the numbness." with the additional clarification "I did realize the redness and swelling weren't likely related to the demylinating process, but it recently started on top of the previous numbness (which presents to me as REALLY cold. I don't even really know if it's what anyone else would consider numb)."

IF you mean this cold sensation you've called numbness comes and goes in  your feet, knees and hands and only recently your hands have begun to swell and be visibly red, along with the noted loss of sensation in your hands....i'm actually wondering if anyone has ever considered an occupational causation, considering you type for a living and the sensation is in all peripherals and your knees, if the sensation symmetrical too there may be more indication of a peripheral nervous system issue causing it...have you had any MRI's of your spine?  

I'm not sure if MS would be the most likely answer after nearly 2 decades but i think it would definitely be in your best interest to stick with your current neurologist until what is going on is more clearly identified.

Hope that gives you some food for thought..........JJ
Avatar universal
Yes, I'd say very clearly that you've given me "food for thought". I especially liked the "sensory symptoms are very, very common with mental health conditions" comment.

That being said, yes, my MRI'S as well as every neurologist I've ever seen has called the lesions demylinating. And yes, she did show me and specifically mention the one part of my brain that is "typical" (of the 4 possible places). My spinal cord is clear with no demylination.

I would call what started in the fall "dysesthesia", although I admit that I was unfamiliar with what to call it. That started in my feet and lasted several weeks. With my hands, I noticed that I could feel my head when I washed my hair, but not my actual hair. That's around the time that I acknowledged to myself that I hadn't been "feeling" things normally for a little while. I could  (and can) feel things,  just not as detailed as before. I sometimes drop things because I thought I was holding it tighter than I apparently was.  This isn't constant and I never know when it will happen or how long it will last. My knees are only "numb" (which is the word the neurologist assigned it when I was hesitant to call it that) from about halfway up the kneecap into my thigh. The numbness is then less centralized and distinct.

I do have one spot on my back that even I would classify as numb. Between my shoulder blades, right in the middle. I can't tell you how big the area is because I can't see it to measure it, but I would guess that it's only an inch or so in diameter.

The swelling and redness in my hands is a new symptom as of last week. It would never have made me think I need to see a neurologist, and again, I doubt that it's related to the other issues.

Lastly, I'd like to add that I'm frustrated with the entire situation, but I do take responsibly for not staying with neurologists after my symptoms clear up or they can't figure out what the problem is.

I have also had my fair share of neurologists that seem as confused by what is happening as you appear to be. I appreciate if you're trying to be supportive and I apologize if I took some of your comments to be more condescending than you meant them. I assure you that I would love for this to be an easy diagnosis - and I wish I had ever been textbook with anything medical that has ever happened in my life. I hope that for you, it was much easier and I hope that you are doing well.
987762 tn?1331027953
I am truly sorry that you found some of my comments condescending, that came as a bit of a shock as i had absolutely zero intent for you to take my comments in a negative way!

I hope you get your neurological answer soon.......JJ
Avatar universal
I had double vision, face felt funny, balance off, etc. for 1st episode and test came back ok but 1st MRI said strongly suggested MS.  The doctors were just waiting for a second episode. That came 6 yrs later, not as bad as 1st but then they said MS. 2nd MRI showed scars. It started in 1993 and was told MS at end of 1999.  Then I was put on shots. I can't understand why you weren't? Has any test come back positive in all these years?  I feel terrible for you, it is the most difficult thing not knowing. My prayers are with you and your daughter.  
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