I am 48 years old and approx 8 months ago I woke with partial vision in my right eye. Optic Neuritis was eventually diagnosed and the left eye was also affected a few weeks later. This lasted for 5 months in total and I still suffer from double vision and photo sensitivity.
Around the same time as the first eye was affected, I started getting tremors and jerking in my right arm and twitches all over my body apart from my face.
I also have suffered from the following symptoms throughout the past few months - my right foot turns outwards as if the bottom of my leg has twisted, terrible burning pain in both feet, my hands hurt constantly, back spasms that have been constant some days, numbness of my face (and all of my right side has alot less feeling than my left side), I forget everything and this is continuing to get worse, pins and needles in various parts of my body, terrible sweats that come day and night, itching all over my body that feels like it is crawling with insects, and my balance is completely shot and I have had falls. There are many more symptoms too - all weird and quite awful.
I am seeing a wonderful neurologist who is a MS specialist, who was quite sure I had MS. But with clear blood tests, VEP, spinal and brain MRIs I have now been told it is unlikely I have this. Which is obviously great, but I would just like to know what is going on with my body. I am due to have another nerve conductor test, have had more blood tests, physio on my twisted foot, see a CB therapist, and I will maybe have a lumbar puncture.
If anyone has any idea what other tests I can have or if they have any idea at all what is going on with me, please please let me know as my body is in a terrible way and going from very healthy to this is just so awful. I can no longer leave the house without someone being with me as my balance is so bad. My eyesight has improved over the past three weeks (thankfully) but the balance issues are just as bad.. I am covered in bruises having walked into every door in the house!
Thank you so much for reading this and please help if you can.
Have they ordered an mri of your spine yet? The lumbar puncture may be helpful in your case too. I know of people who have mostly spinal lesions, and recurrent bouts of optic neuritis.
The walking into walls/balance problem is a problem with proprioception. I have this too... I too am covered in bruises, and even have to have something to hang onto while I shower.
If you can, try to get a 3T MRI, they are more sensitive, and can pick up tiny lesions. I'm sorry, and I wish I had better things to say, but this realyy does sound like MS. There are some who mainly get have their disease confined to there eyes and spine. I have Relapsing/Remitting MS, and most of my lesions are in my brain-but I have a friend whose lesions primarily affect her eyes and her spine.
I'm so sorry you are going through all of this too. It's seems even more scary when your doctors aren't diagnosing fast enough. MS is very tough to dx, and it can take a long time. There are very specific things they have to be able to document before they can officially call it ms.
Have you visited the MS forum here? It's very well supported, and full of nice people.
I have already had a clear brain and spine mri.
the neuro i see is a ms specialist and she really did believe i have ms. but none of the tests are showing demylination. i am now going to have tests for nerve endings (no name for what she is thinking now). its very frustrating isnt it.
baths and showers have to be tepid as i suffer badly after hot showers/baths. feel like i will pass out and my balance is even more shot (if thats possible).
i have reasonably ok days and terrible days.
my father passed away a couple of days ago and if this was psychological, then surely i would be worse after this as it was quite unexpected? sorry just thinking out loud as this all started after a particularly stressful time when i was caring for my brother in law who was dying from terminal liver cancer. the ON started one week before he died, and the rest of the symptoms kicked in within a few weeks.
its a tough time right now as i am grieving for my father and coping with all this. the pain is horrible and some days i cannot get out of bed without help. i feel like im 90 not 48!! and i was quite fit and healthy before this started. had a few problems where i would go to the gp and say i just dont feel 100% - got dx with fibro a couple of years ago. mainly that was the fatigue.
anyway, i will indeed visit the ms forum. thank you for pointing me to this
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