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Thats what got me on the MS path in the first place, dizziness and balance. My VEP and MRI were both positive and like you said, neg on the LP. My issues right now are, off balance, twitching in various areas (feet, fatty part of thumb leading into hand, I feel like a freak show watching it, lol) scalp. Tightness across chest. Hot sensation on top of right foot for about two weeks, now switched to the left. Bad pain in upper back/neck/shoulders. Twitching eye, twitching eyelid. Freezing/sweating. Stiff in legs and arms. If I move my feet just right, I start into a cramp. Burning in my face. Very tired lately. Stabbing in brain. Feelings of getting a poke from an electrical outlet (love that one............NOT). I hope this helps. I hope you get answers soon. Hang in there :)
Hi there, jadedangeleyes. Nothing you're saying is so specific to MS that it couldn't be something else but what you're describing certainly sounds neurological. Based on your sx, I would seek out a good neurologist (perhaps your PCP can refer you to one -- I'm a big believer in keeping your general doctor in the loop). There's a good chance they might order an MRI or 2.

Also, regarding your eye, can you explain your sx more fully? Is it both eyes? Any difference in color in each eye or are they both "red impaired" and are you blurry or experiencing any pain?
[QUOTE=Bearygood;3560944]Hi there, jadedangeleyes. Nothing you're saying is so specific to MS that it couldn't be something else but what you're describing certainly sounds neurological. Based on your sx, I would seek out a good neurologist (perhaps your PCP can refer you to one -- I'm a big believer in keeping your general doctor in the loop). There's a good chance they might order an MRI or 2.

Also, regarding your eye, can you explain your sx more fully? Is it both eyes? Any difference in color in each eye or are they both "red impaired" and are you blurry or experiencing any pain?[/QUOTE]

Just my right eye. My left eye isn't functional at all. That is the eye that has no muscle tone at all. It also has the retinal holes etc. She just said, I am losing my ability to see colors, go see a specialist, end of story. I left her office baffled. The Rx change leaves me baffled too. A year ago when I got my glasses they were thicker, this time around they weren't so thick, and I can tell they aren't the right Rx. They aren't working I can't see a darn thing even with them on. And everyone once in a while I keep asking why is the room so smoky? And no one smokes in the house. I got the weirdest look from people. They said blink a few times. I did, and the smoky look went away.
Please do it fast. I don't mean to scare you but you will just feel better once you get the ball rolling. If you don't have a GP now, perhaps your old one can give you a referral to a neurologist in your area. We can probably help you find an MS specialist but to be honest, it sounds like you should go to a regular neuro. Ask around. Just START. Also, if you had any previous tests done by your former neuro, make sure you get the reports and if if there were MRIs done, the films. Please keep us posted and ask any other questions you might have, okay? I really want you to take care of that eye as well so if it's easier for you to start that way, please ask your ophthalmologist for a referral to a neuro-ophthalmologist. These doctors are certified in both neurology and ophthalmology, specializing in neurological conditions of the eye. If that's the quickest route, go that way -- and then they can make a referral to a regular neurologist. Please do keep us posted!! But pick up that phone tomorrow and start dialing! ;)
I was told there was no correction for the retinal holes?? He said that I could do "cosmetic" surgery for self-esteem reasons only. I have an appointment on June 17th at Johns Hopkins.

Here are the symptoms I am going through today and why Johns Hopkins Hospital is very concerned:

Falling
Balance problems
Vision going in and out
Stomping or tippy-toe gait
Muscle rigity or spatic like you are stretching a piece of elastic and it is retracting back.
I can't remember anything that happens right that minute.
I can't write some times.
I get the inner body tremors that go to outward tremors that if someone touches me they can feel them too.
My body temp will go from normal to minor hypothermia in a split second and last anywhere to 1-3 minutes.
I lose sensory, taste, smell, vision, feel.
Migraines
Seizures are getting longer. At first they would last 1-2 minutes, now they are lasting 3-7 minutes.
I am using the bathroom more, but sometimes when I have the urge to go, I have to force it or wait until it comes.
When I am around heat I get groggy or my headache is triggered.
My neck gets stiff and and I can't move it.
I have moments where I can't even chop up meat when I am cooking it or lift the pan in which I am cooking it in.
Slurred speech everyday like I am drunk, stuttering, repeating phrases while talking or writing my homework. you can literally watch my mind go. That is scary.
I am confused a lot.
I can't focus on conversations, television.
The vision is hazy a lot, smokey, or blurry. I was associating that with the seizures. But it's happening when I am not having seizures as well.
I am shaky whether I eat or not. I was thinking it was my blood pressure or my sugar levels, but I have been keeping an eye on both, and the only time my blood pressure is off is when I have had a seizure it's elevated, and when it is low is during the minor hypothermia moment. I can't keep warm.
I can lose my train of thought in mid-conversation a lot, and it's getting old. I haven't always been like this.
And what is getting the doctors is the burning sensation in my head. No one can figure that one out. The burning sensation in my head then the migraines that leads to the seizures. Last night in fact was horrid. I had a migraine all day, I kept it in control until last night, and that's when I had my longest seizure. It lasted for 9 minutes according to my roommate. And I got sick in the middle of the seizure and about choked until they rolled me over.
I hope Johns Hopkins Hospital has answers for me.





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