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Undiagnosed and confused

Hi y’all… I’m almost 47… For years I’ve had so many of the symptoms… My doctor never once connected any of the dots. Then I had went with out insurance for a couple years.. so when I was able to go back to the Dr. his son had taken over the practice… Needless​ to say.. I bombarded the poor man with all these symptoms.. And the first question he had asked was.. Have you been tested for M.S.?

So he did blood work on me.. My vitamin B and D levels were low.. and liver enzymes were high…( Oh..I failed to mention..I am a Bariatric patient. I have malabsorption.. ) So I am taking extra vitamins and go back to say if my b and d have gone up.. And if symptoms are better… If not he’s sending me to a neurologist.

He also sent me for an MRI. With and with out contrast… No lesions.

For many years I’ve have trouble with restless legs… I my vision gets blurry on and off..(going for new glasses in two weeks which is long over due… They will be dilating my eyes to look for any damage to optical nerves) I have a hard time emptying my bladder.. stinging and tingling and burning in my face (mostly right side) and on my scalp. I’m constantly dropping things (cuz I loose the feeling and sensations in my hands ) and I’ve lost so much of my strength in the last few years.i stagger when I walk. My EARS are constantly ringing… Which drives me absolutely bonkers!!! Pain on the top of my hands and feet at random times.. I do have degenerative disc disease in my lower back with bulging disk.. the MRI showed that I have bulging disc, narrowing of spinal canal, and stenosis in two areas..

I have a long way to go before I get a diagnosis from what I’ve been reading.. it worries me… I know that I have a lot going on.. but most of these symptoms that I have I have had for a very long time.. I’m just scared.. I don’t know what to expect… And I’m so frustrated that my old Dr didn’t think about all the things I have had going on… On and off thru out the years I’ve gone to him…

This all is so scary to me… Thank you for taking the time to read my post… I just had to get this off my chest…

Any suggestions or anything would be so helpful and appreciated!! Thanks y’all!!

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  • pmm
    3 years ago

    Jody, my diagnosis journey sounds very similar to yours. I’m not sure that I have much to say in the way of tangible suggestions, but sometimes knowing that you are not the only one in this odd situation is helpful. I’ve had neurological symptoms since I was 10 years old (I am now 51), but were generally recognized as migraine w/ aura (the fact that I have a migraine history has been a complicating factor in my MS diagnosis), and later, just being too stressed, etc. My MRI never showed lesions that were without a doubt attributable to MS. Just a few white spots, no bigger than 4mm in diameter, that have never changed over the ~15 years that I have been getting MRIs and are never contrast-enhanced (which happens w/ “active” lesions). Unrelenting fatigue and the occasional numbness would send me to the doctor to search for a cause, but no one really seemed to look very hard (“you are just stressed out, and the white spots in your MRI are just due to your migraine history”). When I was 31, I had optic neuritis that left me blind in my right eye for several weeks, and that incident was chalked up as an isolated event, and the neurologist never asked me to follow up (so I didn’t). About 8 yrs later, my fatigue hit critical levels and I was having cognitive problems, so there was another round of doc visits and inconclusive reports. I literally gave up on the medical field, believing that (as one doctor had put it) if there was something seriously wrong with me, then I would not be able to walk by then. I was tired of hearing the same thing (“you are just stressed out”), so I stopped seeking answers and viewed my fatigue as “this is what everyone feels, stop being lazy and just push through it”). During a routine eye exam, the optometrist offered to do a baseline measurement of my retinal nerve fiber layer (RNFL) for $50, which he said would be a good thing to have for reference in the future, to be able to do early predictions of glaucoma, retinal detachment, etc. I agreed to the OCT scan (optical coherence tomography), and the results showed profound atrophy of my RNFL in both eyes (not just the one that had optic neuritis). He was puzzled (my eyes did not “look glaucomous” to him). After discussing w/ some colleagues, he told me that a thin RNFL showing up on an OCT scan could indicate neurological problems such as MS, and referred me to a neurologist. This utterly serendipitous situation is what led to my MS diagnosis. A suggestion would be to have your optometrist conduct an OCT scan on your eyes during your next annual check-up, and see if there are some anomalies that the MRI isn’t sensitive enough to pick up. By the way, I was your age when I received the MS diagnosis, after nearly a lifetime of seeking answers. Good luck!

  • Dimitri
    3 years ago

    Sorry to hear about your ordeal. I was diagnosed immediately after a mri, but my sister went through a tough time getting answers to her illness. She had a clean mri like you, but was still having symptoms similar to ms. She was eventually diagnosed with lupus.

    Autoimmune diseases can be quite difficult to differentiate. If your neurologist cannot find anything then go to a rheumatologist for answers.

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