Brain Demyelinating diseases OTHER than MS
Have had progressive Brain Demyelination over course of 10 yrs with no definitive diagnosis even after vast testing and seeing specialists in NYC. During that time span, many disturbing issues have arisen such as serious ataxia, gait issues, 4th optic nerve palsy/diplopia and other optical issues, sensory impairment, etc., etc., etc....
I dropped the neurologist at the medical group that had been "attending" (so NOT!) to my increasing problems. Yes, related disorders/disease (Like Graves, Sjogren's Syndrome and others) had been tested, all negative. I chose an outstanding neurologist who took one look at the 10 yrs worth of Brain MRIs and immediately sent me to get brain, cervical and thoracic spine MRIs. His diagnosis: advanced MS, which at my age of 75 brings problems with what medications can be used. He wants me to have infusion therapy with Ocrevus but hesitant due to its side effects and how it can impact a patient my age. So he referred me to a neurologist specializing in MS. She examined MRIs and announced that in her experienced opinion it is NOT multiple sclerosis causing the lesion scarring. She patiently and fully explained by pointing out the very symmetrical formation of lesions, as opposed to the more scattered demyelination caused by MS. A thorough exam followed, and she recommended that I have genetic testing to see if there were links to what she was including as possible reasons for my many physical issues (also causing processing and emotional issues). We did concur on spinal tap as a means of seeing if oligoclonal bands were present, so I had the procedure. She also ordered several tests to be done on the CSF (and on blood work) for a slew of specific testing.
Thus far: Only 1 band in the CSF and still waiting on other results. Will be discussing genetics results when completed.
MEANWHILE, we had a Virtual Visit in which she presented (based on my medical history) the possibilities of the demyelination being caused by polyneuropathies and/or polyarthritic conditions. THAT blew my mind! My rheumatologist and she will be conferring on my issues with poymalgia rheumatica, osteoarthritis, Raynaud's, and extensive neuropathies not connected to definitive causes (no diabetes, for example).
I've done a great deal of researching on my own, because I was so blown away that it is possible that I do NOT have MS (and thus would not be served by the prescribed infusion drug), and that all that I've been dealing with could well be caused by "something else."
As she emphasized: If I were to go ahead with the diagnosis of MS and undergo Ocrevus (which she does not approve of anyway due to my age), it could mask what could well be another disorder. So I've chosen to follow her guidance, much to the disapproval of my primary neurologist who diagnosed MS....as I told him at our recent followup visit "You referred me to her, and I believe it's worthwhile investigating her possible sources for the lesions."
I created charts with possible disorders, listing the symptoms, etc for each. I am dumbfounded by how overlapping they are, and how you could easily say that my lesions and accompanying issues are relatable to them and even MS (but with distinctions for the neuropathic and polyarthritic disorders).
Needless to say, I am overwhelmed and overstressed (not a good thing because stress promotes more lesion development which equates to more "dead" brain areas and related consequences). I have other medical issues with which I've been coping/dealing, including Chronic Regional Pain Syndrome (which appears has now affected entire leg, not just ankle/foot). Too many other factors, way too many on my proverbial plate. But I am focusing on what I can still do and not allow dark depressive thoughts permeate. That won't help me, nor in turn help my husband.
So I ask: Anyone have personal experiences with ANYTHING that I've described/presented here?
Possibly with.....
• Genetic Leukoencephalopathy
• Chronic Inflammatory Demyelinating Polyneuropathy? (CIPD)
• Chronic inflammatory demyelination related to arthritic diseases?
• Any other ideas??
I am overwhelmed and overstressed, neither of which are good for what is happening within my brain. Very difficult to find distractions, to focus on mundane things. I am trying not to tax my brain because I am struggling with the fact that it continues being demyelinated while awaiting test results and having others scheduled. TIME is so precious.
I would be so appreciative of any info from members who have had similar situation/experiences.
Por favor, No suggestions of esoteric remedies.
Thank you for taking the time to read this rather long submission...
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Hi delia74 I went dizzy and had fall in bedroom had to get myself up as mum down stairs
Oh no! Hope you did not get hurt, nor hit your head. I have fallen several times, and it is frightening. Twice went to get head checked out since I did bang it rather hard. Thank God, no fractures, no brain bleeds. But I am ever so afraid of being in situations where I could get hurt, so I quickly scan each room/space within which I will be in, whether at home or elsewhere. NO SUDDEN moves, including line of vision. Examine each room of your house for potential dangers (tripingslipping on small rugs -- actually they are ill advised, I removed a nice one that I had in front of the island/sink area, and the ones in the bathrooms are definitely non-sed). Look around each room to see if you should move or remove small tables with pointy edges. I wear Skechers with a wonderful sole as my "slippers", they are designated specifically for indoor use only. Install night lights and motion detecting fixtures that can turn on when you need to get up at night. I lose all sense of spaces around me when in the dark, so darkness terrifies me.
Now as far as the dizziness: definitely bring that up to your neurologist. Go prepared with a list of any possible signs that things just weren't right before the episode, and how you felt afterwards. Enough sleep? New medication, even over the counter ones? Going prepared will help your doctor to best helpyou. Try to get in the practice of keeping a journal, even if just jotting down fragments of sentences. That is how you can help yourself and in turn help your doctors to best take care of you.
I would appreciate your letting me know who things fare with ou. Best of luck: Iris🌺
I didnt hit my head thank god,as I put my arm to try save fall but still went with a thurd.sorry to hear you have had falls too take care Rachel x
Hi delia74 they showed my brain and white matter on MRI scan.neurolgist I'm dyslexic excuse my spellings.they want to put electric shock in my head.hope your keeping well
What reason(s) were you offered for justifying having electric shock applied to your head? I honestly have never read of that being done due to finding white matter on MRI. It's my understanding that everyone has white matter., as it makes up half the human brain. Plays a critical role in helping body process information. My neurologist is concerned that I have had a great deal of my white matter affected by demyelination, resulting in copious lesions. This has happened over a period of about 11 years, creating many challenges for me, including serious balance issues, very unsteady gait, effects on my central nervous system which then in turn affects how my body functions. I'm 76 and my neurologist was upset that prior medical group 's neurologists were so lax in determining what was happening to my body, my brain specifically. He wanted to start me on Ocrevus (infusion therapy) but is hesitant to do so due to my age, degree of demyelination, and the serious side effects of that infusion therapy. I decided that I do NOT want it. I have given it a great deal f thought. It's a very personal decision.
Please let me know what you doctor proposes to do and what YOU wish to do.
Did you ever receive help with your dyslexia as a child? Our only granddaughter (almost 10 yrs old) was diagnosed within this current year. She is receiving services via her school district and via tutors hired by her parents. As a high school teacher, I had several students who were not diagnosed and struggled. They managed to compensate in their own ways and did fairly well, with a few receiving services in high school, and one went to a college in Vermont that had programs geared to students with special needs. She graduated successfully, and when I ran into her here in our town, she excitedly told me that she graduated with a degree in social work and was employed as such with an agency in our county, working with teens. I was overjoyed to learn this great news!
Let me know about the white matter question that I asked about. Have a restful, peaceful, and loving holidays with family and friends.💖😊
Hi delia74 I wasn't told by neurologist there would be bad side effects.could you tell me about side effects please.merry Xmas and happy new year x