Brain Demyelinating diseases OTHER than MS

No te han indicado tomar vitamina b1?

No Dr not told me this,thanks for advice.

Hello! You have my deepest empathy! I am almost 80 years old, and have had many neurological problems! I had non-paralytic polio, as a boy ( before the sugar cube medication came out -I believe it was labeled the Salk vaccine! ). I’ve had Ataxia difficulties most of my life. Peripheral neuropathy set in, in my thirties, along with some numbness. I was referred to the top neurologist in the Cleveland area (Dr. Chester). She went over me from head to toe, and put me in hospital for a week of testing. After all that, she said she suspected demyelinating disease ( this was before MRI’s were invented! ). So, she thought it could be MS. Then, my Ataxia got worse over the next few years, with more gait issues, and when I had an MRI, with one of the first problems experimental machines out, I was referred to a top Neurosurgeon in Cleveland ( Dr. White ), who had seen a lesion at the cerebellar pontine angle of the brain, causing nerve root problems, affecting my cranial nerves. Anyway, I was given an angiogram, and it turned out to be an enlarged artery problem, where, somehow or the other one of my brain arteries attached itself to that part of the brain, and that was pressing in, on my brain, causing mild symptoms, of numbness, ataxia, balance, gait, vocal and swallowing difficulties etc. Unfortunately, that area of the brain, is close to the conscious center, and an operation, would be most delicate, to try and detach the artery, from pressing in on my brain, so an operation could be successfully performed, but the Doctor could not guarantee that I would regain consciousness, after the operation. So, they put me on 2 blood pressure medicines, that I have been on ever since! The symptoms were somewhat relieved. I have a partially paralyzed vocal chord, so I had to give up my chosen career, that I went 6 years to college for. I had been trained as an opera singer, and had a good career started, but I was having vocal range problems, and getting hoarse at times. So, demyelinating disease was ruled out! In my 6o’s, I was having more symptoms, like falls, concussions, even gran mal seizures! The neurologist put me in Depakote, anti-seizure medicine! At that time if my life, I had retired from my job, and moved to a small town, for about 10 years. We moved to a big city, where there is a regional hospital, and with more symptoms, that had developed ( tremor, stiffness, slow walking, stiff gait, so my internist thought that I may have Parkinsonism. So, he sent me to a neurologist, who, after testing, diagnosed me with Parkinson’s Disease! Lately, I’ve had ptosis of an eyelid, diplopia, and blurriness! The neurologist suspected Myasthenia Gravis, so a blood test was sent to Mayo Clinic, which came back as negative for certain antibodies. I see the ophthalmologist soon, where he will check and see if I may have Optical Myasthenia Gravis! So, as you can see, I’ve been through the mill and then some! Good luck!🍀 As the saying goes, ‘Patience is a virtue’!

I have CIDP and it only affects your peripheral nerves so you can probably take that off your list of possibilities. But if your main symptoms are muscle weakness, balance etc or sensory issues, I'd recommend a neuromuscular specialist. Perhaps it's possible you have two different things happenings. Have you ever had nerve conduction studies?

Gracias por contribuir.
Por supuesto que he recibido por inyección de vitamina B12, mensualmente por ya hace 10 años. Y tomo diariamente Women's Centrum Silver, que contiene también varias vitaminas B.

Me imagino que sí me han ayudado pero son tantas condiciones que tengo pues lo mejor es obtener a menudo pruebas (de sangre) que nos deja saber los niveles de B12 y D3. Todos los resultados han sido aceptables. Tomo cápsulas de vitamina D3 con los otros suplementos dietéticos esenciales como CoQ10, alpha lipoic acid, magnesium glyconate. Con las condiciones que desafortunadamente son parte de mi vida, me educo todo lo posible. Todavía no se sabe lo que ha causado las lesiones cerebrales. Hace ya más de una década que tengo las lesiones y presentemente mi doctora del Hospital Columbia Presbyterian y otros especialistas apoyan que el origen es hereditario-genético, pues esperamos los resultados de pruebas genéticas "whole exome". Se toma mucho tiempo, así que no sabré hasta fines de diciembre. Tres especialistas están presentemente de acuerdo con las pruebas preliminares que apuntan a trastornos genéticos conocidos como leucodistrofías/leucoencefalopatías. Mientras tanto me las arreglo lo mejor posible. Soy plenamente consciente que tales pruebas no son definitivas pero las preliminaries nos han dado claves, y pruebas genéticas se me hacen más atractivas que una biopsia cerebral intrusiva, la cual también no es cluyente. Mi largo viaje médico contiene mucho más pero esto es todo lo que quiere compartir a este tiempo. De nuevo, gracias por haber contribuido.

TRANSLATION:
Thank you for contributing.
Of course I've taken monthly injections of vitamin B12 for 10 years now. And I also take daily dose of Women's Centrum Silver, which also contains various B vitamins. I imagine that they have helped but I have so many conditions so the best that I can do is (blood) tests to learn levels of B12 and D. All have been acceptable. I take vitamin D3 with the other essential dietary supplements like CoQ10, alpha lipoic acid, magnesium glyconate. With the conditions that are unfortunately a part of my life, I educate myself as much as possible. It's still not known what has caused my brain lesions. It's been more than a decade that I've had them and presently my doctor from Columbia Presbyterian Hospital and other neurology specialists are presently in agreement that the preliminary tests point to genetic disorders known as leukodystrophies/leukoencephalopathies, so we await the results of whole exome genetic testing. Testing takes a long time, thus I won't know until towards end of December. Three neurology specialists agree that the preliminary tests point toward leukodystropies or leukoencephalopathies. Meanwhile, I cope as best possible. I am fully aware that such testing is not necessarily definitive but the preliminary ones have provided clues, and gene testing is certainly more appealing to me than an intrusive brain biopsy, which also is not conclusive. There's more to my long journey but this is all I want to share at this point and time.
Again, thank you for having contributed.🌺

Please check for Superficial Siderosis. CTM. Will let you know. I trust Mayo Clinic Minnesota. See, Mayo Clinic/Steve GRINSTEAD.

Have you been tested for MOGAD (Myelin oligodendrocyte glycoprotein antibody-associated disease)? The Mayo Clinic is one of the top researchers of this rare inflammatory autoimmune disease of the CNS.

Here is the link! https://www.mayoclinic.org/diseases-conditions/mogad/symptoms-causes/syc-20560476

God Bless!!
Carla

Hi Delia74.i don't have any information as yet hopefully when I've seen neurologist this Wednesday x

Hoping you indeed start to get reliable answers to your health situation. Pls keep in touch.😊

I truly appreciate your kind and heartwarming words💖.