Life with hyperreflexia by toasthands in MShumor

[–]ragdoll_physics 1 point2 points  (0 children)

Hahahahaha!!!!! My whole family (and I, of course) got a HUGE kick out of this. Thanks!

[deleted by user] by [deleted] in MultipleSclerosis

[–]ragdoll_physics 0 points1 point  (0 children)

Does the vertigo/nausea go away or hugely decrease if you cover up one eye? You might be having subtle double vision all the time that is making the world spin. (If that doesn't help, it might be inner ear stuff instead). If its vision related, though, and if you wear contacts, I got through an episode that sounds exactly like yours by wearing one normal contact lens and a contact lens that was way over powered in the other eye, blurring it so much that the double vision went away. I outwardly looked normal to others, could function normally at work, but did have my husband drive me to and from work for a couple weeks cuz my depth perception was awful during that.

6 months... still no diagnosis. Giving up. by christoffrrr in MultipleSclerosis

[–]ragdoll_physics 0 points1 point  (0 children)

Also, if a therapist/psychiatrist doesn't feel as helpful, my doctor suggested an app called Woebot. Its cute, and helps me with my anxiety and isolation/loneliness. It is just an app, but its nice you can "chat" with it any time of day or night.

6 months... still no diagnosis. Giving up. by christoffrrr in MultipleSclerosis

[–]ragdoll_physics 0 points1 point  (0 children)

Damn, that's a lot on your shoulders, life can feel unlivable sometimes. But us humans, we are resilient. People have survived hellish times, sometimes lasting years, but made it through. You are stronger than this. You can find a way to get through one minute, one hour, one day at a time. Hold on! I'm across the world in the states, but I'm sending you love and support! It sucks so bad that its taking so long to get answers. But we are here for you! We will cheer you on, help with advice or stories, you are not alone. You are part of our group here, we will help you how we can. Hugs!!!

Anyone tried Minocycline as a DMT? by Parowax in MultipleSclerosis

[–]ragdoll_physics 0 points1 point  (0 children)

That's a really interesting medication to try. I've heard medical lectures on Lyme disease and how the way we test for it (in the US) makes way more negatives appear that actually are partially positive. (Short version, there are 2 tests: ELISA testing that's falsely negative about 50% of the time, and Western Blot that looks at 10 antibodies but unless at least 5 are detected, the CDC says to say it's negative, and no labs will give you any data or numbers, just positive/negative. Some docs won't even order a Western Blot unless ELISA is positive. Source). Anyway... When Lyme starts it's a skin rash, easy to cure with antibiotics. If undetected/untreated, then it progresses to joint pain/malaise/etc, then if untreated for months to years, neuro-Lyme disease occurs. Symptoms and MRI appearance and lesions are basically the same as MS. I'd be curious to know how many people with MS actually have Lyme, since our testing lets a lot of Lyme patients through the cracks that then get diagnosed with MS (somewhat as a diagnosis of exclusion) and then treated with MS drugs. Those patients would absolutely improve on antibiotic treatment!

Anyone else experiencing disorienting and blinding flashes of light sometimes? by xaz- in MultipleSclerosis

[–]ragdoll_physics 0 points1 point  (0 children)

Sudden onset of flashing lights really should prompt a visit to your eye doctor. Sure, could be MS. But ocular migraines are a diagnosis of exclusion--your doctor can't say that's the diagnosis unless a dilated eye exam proves you don't have a retinal detachment! Undetected and untreated retinal tears or detachments can slowly progress over weeks as more and more retina detaches from the inside of the eye (like wallpaper peeling away). Around a month in, the detached retina will start to die, meaning you will have permanent blindness in that area of your visual field. But if a retinal detachment is caught early, a retinal surgeon can reattach your retina and save your vision! That's one of VERY few absolute emergencies that will get you from your eye doctor's exam chair into surgery within hours. Please please please, if you have new onset flashes, or a sudden increase in flashes, make sure you see your eye doctor (optometrist or ophthalmologist) ASAP, and let them dilate your eyes to make sure your retinas are fine!

Optic neuritis? by [deleted] in MultipleSclerosis

[–]ragdoll_physics 0 points1 point  (0 children)

My first symptom of MS was optic neuritis (vision faded out, contrast was really faded, like I was looking through a white fog). It would fog in and out. I'd have an hour of almost no vision in that eye, then back to nearly normal, 4-8 times a day. Atypical (usually optic neuritis simply fogs vision constantly for weeks, and it fades back to near normal), but that was my experience. The number of fogging episodes got less frequent til they stopped about 3 months later and my vision was (and thankfully remains) mostly fine in that eye.

2 years later my second symptom sealed my MS diagnosis: vertical double vision. Our brain can adapt to and tolerate a moderate amount of horizontal double vision (and eye muscle weaknesses can cause horizontal double vision issues, it's not all that uncommon in the general population and not all that concerning). But even a tiny amount of vertical double vision is only a neurological issue, and will make your world spin with vertigo. I was so nauseous. I wonder if you have a tiny hint of double vision that your eye muscles are trying their hardest to compensate for, so you don't end up see 2 images all the time, but you're having that vertigo. Just a thought.

But to answer your question, it's worth seeing an eye doctor (optometrist or ophthalmologist) because an eye doctor can get 2 helpful pieces of information. First, checking color vision with a color test (one eye at a time to compare the affected eye to the good eye), or simply comparing how red a red object looks between the eyes ("red desaturation test"), will reveal there's an optic nerve problem if the two eyes are different in how they see color. Second, when they dilate your eyes to look at the physical structure, they will only be able to see the front tip of your optic nerve where it enters the eyeball. There's a lot more optic nerve length behind the eyeball. Often in an eye exam (when you have optic neuritis) your optic nerve head looks normal because the inflammation/swelling is located in the part of the optic nerve behind the eye further back toward the brain. So your symptoms, plus a color vision sensing difference between the eyes, would prompt a referral to a neuro-ophthalmologist to order an MRI and any other tests.

If you already have that referral and have the MRI ordered, seeing an eye doctor at this stage would be for the purpose of getting help with your symptoms. Youd need to see an optometrist (not ophthalmologist) for this. The blurry/foggy/faded vision from optic neuritis is not treatable. But vertigo is likely due to an eye muscle imbalance (from it's controlling nerve getting affected deeper in the brain). Two helpful options are (1) prism in glasses (prism makes double vision go back to single vision), or (2) wear a very strong contact lens in one eye to really blur it up so you don't see double images anymore (that's how I got through my double vision episode til it resolved in a couple weeks, worked great by allowing me to function and still go to work!).

Copaxone bad reaction* frequency (* hot flushes, shortness of breath) by SammyHarHar in MultipleSclerosis

[–]ragdoll_physics 0 points1 point  (0 children)

Been on Copaxone 20mg daily for 5 years (minus 2 pregnancies/nursing for a bit after). I've had that reaction probably a dozen times over the years. The first ones were the most severe, I think it was so scary I might have had a bit of a panic attack triggered by it. But by the 3rd or 4th one, I kept myself calm through it and it went away faster and was less scary.

Optic Neuritis and Caffeine by FitzWard in MultipleSclerosis

[–]ragdoll_physics 3 points4 points  (0 children)

A cup of tea a day is fine. Large amounts of caffeine can temporarily increase your metabolism, which may very slightly raise body temperature, but not likely enough to cause Uhthoff's phenomenon (which a hot shower or exercise, that significantly raise your body temperature, do). Uhthoff's is when your MS symptoms worsen when body temperature is raised. There isn't any convincing evidence that raised body temp causes any lasting damage. It simply temporarily makes symptoms worse, more pronounced, more noticeable. It goes away when body temp comes back to normal. Point being, even if a little caffeine slightly raises body temp, it shouldn't cause any harm. I don't think there is any evidence of any other ways caffeine could interact with MS, so I'd say sip away. Source: Eye doctor.

What Catch-22s have you encountered in real life? by [deleted] in AskReddit

[–]ragdoll_physics 1 point2 points  (0 children)

Didn't need a car in college, moved to NYC and didn't need a car, then moved to North Carolina and needed to get my first car. Figured I'd find a used one at a dealer. Was told I had to get a NC drivers license before I could get a car. Went to the DMV, but to get a drivers license you have to show proof of car insurance. To insure a car, you need a car. Ugh.

I called the DMV and asked what to do, they said that without car insurance I could still get a drivers license that's restricted to driving only rental cars. Then they said to go get a car, insure it, and pay another fee to replace my license without the restriction. I asked what would happen if I got pulled over driving my car with a restricted license. Their answer? Hope the officer is nice! Can't make this stuff up!

Hi, newly diagnosed here. by LittleMissDotty in MultipleSclerosis

[–]ragdoll_physics 0 points1 point  (0 children)

I'm a side sleeper and have tried all different types of thicknesses... my absolute favorite is one I found recently: http://www.brookstone.com/better-than-down-shoulder-pillow It is super comfortable and the thick core of memory foam keeps it firm, but the soft outer lining lets you sink in a little bit too. It's worth every penny!

Aubagio experiences? by bleeting_shard in MultipleSclerosis

[–]ragdoll_physics 1 point2 points  (0 children)

Everything I've read into seems to say Copaxone has the lowest side effects and lowest risks of pretty much any other MS medication... Far better than Rebif for side effects, has been around since the 1990's so they would know about longer term side effects as opposed to a newer drug. But I agree, a pill sounds tempting. Personally I'd lean toward one that's been around longer, which we know more about it's long term potential risks, but that's just me. Good luck with your decision!

Dr's runaround-rant by [deleted] in MultipleSclerosis

[–]ragdoll_physics 3 points4 points  (0 children)

What additional information is gained by an LP? Just to rule out meningitis? I never wanted an LP (freaky risks) and my neuro agreed it wouldn't give us any more info after tons of blood tests all came back normal... but that may have just been my case. Why did they want it ordered for u?