Old symptoms that have come back

[Tiredofbeingnumb]

My question for you guys is...have you had symptoms that have either mostly or completely went away, then came back? I was diagnosed with MS at the end of January. A week later I had double vision which prompted my first round of Solu-Medrol. The drug did seem to help, and I saw a steady improvement until the beginning of April, where I estimate I was about 95% of normal. Only if I looked to the far left I saw double. Well, I began a new relapse mid April (other sensory symptoms) which I was given another round of Solu-Medrol in the beginning of May. That seemed to stabilize, although those symptoms haven't gone away yet, but they definitely haven't progressed.

Well, about 3 weeks ago I started noticing that the double vision was coming back, ever so slowly. At first, only when I looked to the left I saw double, but now, even when I see straight ahead I see 2 of everything. It is so annoying! I've been in communication with both my neuro-opthalmologist and neurologist. My opth-neuro said it could be attributed to the heat/stress..etc (the double vision was really mild then) and my neurologist said it probably wasnt' a relapse, but to call my opth-neuro if it gets worse. Well, it got worse. I feel like I am back to where I was in February. I do have a call in to her, and hopefully she will call me back, but this is so frustrating! I feel like I am always in a relapse. As soon as some symptoms start to go away, I get new ones. I've been on Betaseron since February, and on the full dose since March.

Anyways, I guess I"m just frustrated. I tell myself at least it isn't a new symptom, and I know how to deal with the double vision, but it is REALLY frustrating.  Can't I get a month where I'm not experiencing an old or new symptom (not counting stuff that may never go away)?? Also, do you guys have an opinion on the likelyhood that this could be a permanent symptom, since it has come back? I swear I was nearly normal (vision wise, LOL) in April, and now it is back. I think it is also weird that this is coming on, because I got Solu-Medrol treatment in May for OTHER symptoms, but yet this is coming on again.

Any advice/opinions..anything would be great!

[jensequitur]

I usually just close one eye when my double vision is troubling me.  It's been really hot around here too - around 102 or so.

[Tiredofbeingnumb]

Yeah, Florida can get pretty hot in the summer, but it usually isn't THIS hot. Hopefully the weather will break soon. The bright side is, there is a lot of sun! I'm from the Northeast, so I miss the four seasons, but at least throughout most of the year, it is beach weather.

I am trying not to stress about the double vision, but it is hard because it is miserable to have to strain to see one of everything instead of two. I'm going on a family vacation in a week, so I'm hoping that will be good for my mind and body. My husband is in the  military, so all of my family is up north, so it will be good to spend time with them again.

Also, my doctors do know about my symptoms, so if it doesn't get better on its own (as I'm aware it might not) then I will make some phone calls!

Thanks for your advice!

[MCBCON]

unfortunately yes

[saveone]

Udkas that was a great analogy you used.

[Udkas]

Hi there again,

Wow it is very hot there at the moment, I am from Australia, so i'm freezing my arse off. We are in the thick of winter and I live in a colder part of Aussie.  I have been to Florida but the weather was perfect when I was there, went to Pensacola and to Orlando, I had a ball.

I had solu medrol and found it did help but after I left hospital all my symptoms returned, I was confused as to if I was having another "attack" or if it was just old stuff.  Even now I get confused as they haven't totally ruled out MS.

I think the warm weather and if you are stressing about it this would make your symptoms flare even after they have gone away.  If you are getting a new symptom lasting over 24 hours I would ring your neuro, or ring if in doubt, I am certainly not an expert. I always get double vision and blurry vision when I get too hot, but not much chance of that at the moment.  Just lately I had an eye flare up and seen the opho for a new evaluation. He said it was the Utoffs Syndrome...

Hubby and I was going to live in FL (for his work) but he has changed jobs now, you are putting me off, it would be too hot for me.

Take care,
Udkas.

[Tiredofbeingnumb]

Thanks for the response. I live in Florida, and we've had 100+ degree weather here recently. Ugh! That could definitely be a factor. I've been laying low, though, too, not staying outside for any length of time. It will be interesting to see if my symptoms get better when the weather cools off--if it does! This IS Florida in the summer after all. I am getting some solu-medrol soon so I hope that helps. This double vision is a real pain.

[Udkas]

Heat, fatigue, stress and infection can all bring on symptoms that have once gone away.  My opho told me that eyes are sensitive to heat.

Think of your body as a complex electrical circuit for a house and your brain is the fuse box, the main power supply centre sending the electrical currents to where it is needed.  Should the fusebox get over loaded you blow a circuit temporarily cutting power but when you take some of the load off the main box the problem doesn't re occur.

Our bodies are the same.  If it is hot there at the moment you could find a worsening of symptoms.  I found after I had an episode of Optic Neuritis that even now years later I get what they call utoffs syndrome and as soon as I get hot, tired or sick my eyes seem to be as bad or sometimes feel worse than what they did all those years ago.  The best way to tell what is happening with your eyes is to have photos taken of your optic discs and also have regular field checks.

B.T.W. I am not diagnosed with MS but TM? and my neuro told me that I could make my symptoms as bad as what I originally had so it would feel like you are having a new attack.

Best wishes, I do indeed hope you are not in another flare,  I hope this helped.

Udkas

[saveone]

bumb.  Since I am not dx and don't know your answers.