Tips or advice

[Ajbloose]

Any suggestions for vision help... I have a very hard time with bright lights and night time driving. Also my MS doctor told me that I should avoinavoid heat as it can cause me relapse.

[NorasMom]

Night blindness runs in my family, so I was dealing with it long before the MS. The obvious solution is to just not drive at night, but of course, reality isn't quite that simple. The only thing I can suggest is to try different types of sunglasses, starting with the shooter variation that was originally developed for pilots. I couldn't use them, but my son had a lot of success with them for a while.

As far as heat, yes, it can definitely cause major problems. Initially, I just had to stop taking really hot baths and using hot tubs or saunas. Then it progressed to avoiding sitting in direct sunlight on hot summer days (always fun when you're a teenager wanting a tan!). Now I just have to avoid heat, period. I keep my house at 58 in the winter and 63 in the summer. I only sit in the shade outside. When I absolutely have to be in the sun, I dress in cool clothes, wipe myself down with water as often as possible, and drink a lot of Gatorade. I can no longer survive without central AC.

[anaishunter]

My understanding is that heat will cause existing symptoms to show up but not really create a relapse (i.e. get new MS activity). Is that correct?

[Ajbloose in reply to anaishunter]

Yes existing symptoms..heats makes them works and can cause new ones.

[Ajbloose in reply to Ajbloose]

I just seen my MS doctor yesterday and that's what he told me.

[NorasMom in reply to anaishunter]

My personal experience is that once I cool back down, I'm fine, but if I'm too hot for too long then the recovery period is longer. No new lesions from getting hot, just a lot of misery.

[anaishunter]

Ajbloose I find that polarized sunglasses help a lot. If you look at Maui Jim's in particular they have different lens colors designed for different types of vision issues (bronze for short-sighted...).

I've had some for years prior to MS as I was short-sighted.

Prior to cataract surgery, the MJ bronze sunglasses help to avoid seeing a halo around lights at night.

Post cataract surgery, the same sunglasses help protect my eyes from bright lights (very annoying after cat surgery)

MJ are on the expensive side but you can find cheaper ones on eBay.

[Xvettech]

bronze polarized lenses. I have Oakley’s. They help a whole lot! Day and night!

[Fancy59 CommunityAmbassador]

Relapses in MS are caused by new activity within the brain or on the spinal cord, (i.e. new lesions or inflamation of old lesions.) Heat can cause exacerbation of existing MS symptoms and severe health issues but not trigger a new relapse as far as I know. But boy it can make you feel really bad when it makes the exacerbations act up. Remember MS is different in everyone. Some people have very bad exacerbations caused by heat and some people have none.The same goes for cold. Some people have severe reactions to cold and a lot of exacerbations and others have none.

For your vision issues please don't only consult with your MS. Neurologist. Seek out the help of a professional optometrist that deals with retina issues and other issues caused by MS. That's the advice I would go by not the neurologist. Don't trust your eyesight to a person who is not professionally trained strictly in eyesight. Be careful driving at night if the lights bother you because it can cause serious issues. I had that problem for a while and I simply found it all but impossible to drive at night while my eyes were acting up. Eventually I got on different. DMT and it helped the eyes and I also used advice from my optometrist.

I go to an optometist that is a retina specialist because MS can do nasty things to the back of your eyes. It can even cause your retina to detach which can lead to serious problems and even blindness if left untreated. I go to my neurologist on Monday and I will double check what I think to be true about heat and exacerbations and let you know what I find out. Fancy59.

[kdali]

Have you seen an ophthalmologist? That's my go to for eye issues, although my optometrist has had a few good tips over the years. I want to say there are yellow lenses for night driving that may help prevent you from being blinded temporarily while driving at night. Using well lit routes can help also. Sunglasses during the day or while in stores can be helpful, particularly if you're in a bright warehouse type location. I prefer hats for this.

Relapse, pseudo relapse, and exacerbation are often confused and confusing terms. I can assure you that heat alone is not going to cause new brain damage, but can make you feel very sick if you're susceptible to heat issues. If you are one to suffer with cold or heat, there are several posts and replies about navigating this issue.

[ahrogers]

If you are taking Gilenya be sure to see an opthamologist regularly as it has a potential to cause macula edema. When I was on it the opthamologist gave me a sheet of grid paper to look at everyday. I put it on the fridge. If I couldn't see all the lines I needed to report it right away. I would guess some of the other DMTs might cause eye side effects as well as MS. So, best to visit an opthamologist who can test everything in your eyes.Best of luck!

[SandraKOE]

My Neurologist does a test at each appointment where they scan my eyes. They said it was like a MRI of your eye. I carried my results to my optometrist because I was having vision problems. I’ve been seeing him for years, He really tried helping me to keep wearing contacts. He finally said “something has changed “. We thought maybe hormonal changes were the reason. Now I believe it was MS. I hate wearing glasses, but I do want to see. He referred me to a neurologist Opthamoligist. She also does the eye MRI. I’m not sure what the test really is called. I’m having trouble seeing & reading road signs but around here I know where I’m live I really don’t have too. They examine my eyes thoroughly. So far so good.

[leking1]

Over my 40+ year history of living with MS, heat has been my biggest trigger/enemy/foe. I have had 4 or 5 MS/Neurologists over the past 43 years, and they have ALL said that heat would cause exacerbation of existing lesions, and extended/repeated overheating could cause new lesions to form. I haven't had a bath or shower with the water temperature over a cool/lukewarm in many, many years. At my house in Florida, I had a large in ground pool. My neurologist said it was great to use in the early mornings, as long as the water temp was below 82 degrees. That's cold water, friends, and takes the fun right out of it. It will wake you up! My Neurologist in Florida ( the 2nd one) is the one who forced the issue. She told me that if I didn't stop working, and leave Florida for a cooler climate, my next 6 month check-up would be in a nursing home. I had argued this decision with her for over a year prior to this, but I HEARD this. I trusted and respected her, and this really hit me hard, so after talking with the Dr. a bit, I went back to my Office, went into my supervisor's office, and told him what my Dr. had said. I then told him that I was going to do it, but at the end of the semester, so I was giving him a six week notice. This was in October, and the semester actually ended in December. I understand about the heat...be careful, and stay as cool as you can. Ice and ice packs are my best friends! I NEVER use a heating pad, just ice !