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Medical Mystery Solved... Maybe?

Headaches began 4 years ago. I have always called them migraines. I was 25 at the time, with no major issues prior. Headaches are daily, lightning bolts I feel I can draw out with a marker including the forks. Direct light, Excessive noise, anything creates severity requiring a long sleeve shirt twisted into a rope and tied tightly around my head over my eyes, but the knot must come back over my nasal bridge for the pressure to be good enough to prevent the feeling of hemorrhaging. When not as severe, the headaches are still there, mostly in the top of my head, but even with medicine (and yes I have tried most all) it is still there, just more manageable. Divalproex (Deprakote) worked better than any other, but I got abnormal blood tests and they removed me from it.

MRI's found brain lesions 4 months after headaches began, around the same time they also found hematuria, abnormal TTE, and my cholesterol was high (hard to explain, but very unusual and unexpected for me).

Since then, I have had 2 abnormal spinal taps (though "barely abnormal"), abnormal metabolic panel leaning toward VLCADD, off and on hematuria [urologist found no cause], consistently abnormal TTE's yet normal TEE's, Abnormal CK levels, WBC Levels, and so on (most of which fluctuates between normal and abnormal). My left eyelid began randomly drooping a year and a half ago which precluded MS (which I was diagnosed with for 2 years). My primary symptoms and concerns are below:

-Numbness and Tingling in Legs and Hands (Primarily right side)
-Spasticity in right foot (as described by one of the specialists)
-Weakness in hands (Unable to hold a hammer without it shifting after hitting a few nails)
-Dystheria (inability to create the words at times)
-Fatigue... Severe fatigue
-Others, but not sure what matters and what doesn't- which further complicates the issue.

I feel at times when symptoms arise and then leave, it becomes hard to describe them. I try to look for examples, but this is very hard at times. Something like a feeling or urge to elevate my feet when sitting, excessive and constant thirst (drink over 350 oz per day), etc.

I have seen 8 neurologists, 3 cardiologists, a urologist, pulmonologist, ENT, and many more.

I have had MRI's (lesions stay the same and have for the last four years), MRA's, TTE's, TEE's, Ultrasounds (non bubble), CT's, Bone Density (I have lost 2 inches according to 2 doc offices that track this, yet bone density scan was normal...), blood tests, and on and on.

Everything that can be ruled out seems to be ruled out...

Now, the current neurologist says these brain lesions are blood clots caused by ischemic stroke. Wants me on blood thinners, they have a Occipital Nerve Block planned for the headaches on Wednesday, Migraine Cream, Nasal Spray and Antibiotics on hand at home since I now get sick frequently, Nuvigil, Butalbitol, and others. Tossed around Botox for head, though we are trying the nerve block first...

I may also have Leukodystrophy and VLCAD- I am just unsure now, three different genetics hospitals- three different answers (I thought that $16K DNA test was supposed to clarify it, but I guess not).

Full disclosure- several of these specialists I have seen, primarily in the beginning, felt I had psychological or mentally created symptoms. I took neuropsyche tests and on and on and they seem to think I am not crazy- at least it never came up again. I did learn to start bringing test results to validate concerns with new doctors which has alleviated this entirely.

Bottom line, I am diagnosed... again, which sounds weird, but I was excited about, in a weird way, when I was diagnosed with MS. I was new to medical stuff, had been told I had brain lesions- which if you haven't been told that before, imagine how scary that can be, and thought there was a treatment plan to fix it. I still am unsure though and need your thoughts...

I have always felt this stuff had to be connected. I am confident the fatigue is very related to the constants headaches, and so on, but nothing seems to explain everything (including the weird things- abnormal spinal tap, hematuria, metabolic panel, etc).

I have always been healthy prior to this, and I am a very driven person- although not overly stressed. I tend to be optimistic, have three amazing kids all under 5, an amazing wife, I have hobbies- woodcrafting, golf, programming, etc. although I have had to adapt each and still work to make it work. I am employed and even without a college degree, I earn enough for us to live comfortably without my wife having to work. I state these things to cover the bases- I guess from the doctors who considered this depression and so on when I couldnt provide documents. I can assure you none have placed me on anti-depressants or tried to, or taken any other action in that realm.

A lot of information, and I thank you for reading through it and apologize for what I see as whining. I am concerned however, and wanting to know if others have an idea of what else this could be. I could provide many reasons for my doubts, but for now, I just want to know if you think with this information that this is a logical-all encompassing diagnosis of Ischemic Strokes.

1 Responses
Avatar universal
Hi, usually a diagnosis of multiple sclerosis can be made over months to years and it is based on MRI, electrophysiological potentials from the brain and the presence of abnormal cells in the cerebrospinal fluid (fluid surrounding the brain). The pointers from your tests are likely to fit into a diagnosis of multiple sclerosis. Hope you have been initiated on therapy. Good luck with your recovery. Regards.
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