Anyone else dealing with MS?

[bobcat]

My lovely wife woke up with double vision the end of Feb., after a trip to the ER she was air ambulanced out to a hospital in Great Falls. After tests, she was diagnosed with MS. The end of March we saw a neurologist and he confirmed the diagnosis and she was asked to choose 1 of 2 medications which have to be take by shot. We've had the training on giving shots, and she's now started on the MS drugs. She's had 2 rounds of IV steroids for her eyes, with no improvement so far. SHe's taking oral steroids now trying for a resolution of her vision problems.

It's amazing how many MS sufferers we've met after her diagnosis, is there anyone on the board or with family members who have it? I guess I'm wanting to hear positive outcomes on the double vision. THe Dr. thinks she's had it for years, and said he doesn't forsee her disease progressing to the point where she'll be crippled, but the eyes are really scaring her.
I'd appreciate any good thoughts sent her way, she's a far better person than me and didn't deserve this.

Take care...

 

[to9]

Sorry to hear about you wife . My wife has a aunt who has MS . She sometimes gets pretty crippled up and has to be in a wheelchair for a while . This seems to come and go . She has never said anything about her vision . Also never seems to be getting any worse . Thats all I know .

 

[IndianaDave]

My wife's sister was diagnosed about 15 years ago. She takes a daily injection (I'm not sure what) and you wouldn't know she had it if she didn't tell you. Her earliest symptons were balance problems and fatigue, I don't think she had a vision problem. She has enough energy to work full-time and lead a normal life. I also was amazed at how many people have it.

 

[Trooperdan]

My ex was diagnosed in 1982. It comes and goes, don't really know her status but pretty sure she is not very good.

 

[forresth]

My grandma had it for most of her life. Some get killed quick by it, other like my Grandma just carry on with it.

I've heard bee stings can help.

 

[BrianE]

1st, sorry to hear...

My cousin was diagnosed several years ago. His vision comes and goes often enough that his license was taken away. Once in awhile he has to use a walking stick due to having troubles walking and staying up. He doesn't seem to let it stop him... He's always positive about it.

 

[s&wchad]

My dear wife was diagnosed with MS about four years ago. She lost vision in her left eye over a 24 hour period (optic neuritis), but recovered it after a week of IV steroids. She has been taking daily injections of Copaxone since and she hasn't had another episode. The faster your wife starts on the blocker medication, the better. Find a good doctor who specializes in MS.

If Mrs. Bobcat would like to talk to Mrs. Chad, drop me a PM and they can swap email addresses or phone numbers.

 

[TAC]

Last year I woke up one morning with double vision. It gradually got better, and was completely gone after about four hours. I thought I had a mild stroke and went in to see my doctor. He ran all kinds of test, asked me tons of questions, and came up with no conclusion, not even a theory. He advised me to go to my eye doctor.

Thinking it was an eye problem, I didn't feel the same sense of urgency I did when thinking it was a stroke, so I waited a few days. The double vision would return in the morning when I woke up, but would gradually go away a few hours later. I finally went to an ophthalmologist. Of course when I got there the problem had gone away for the day. He did an extensive exam and various testing, but could find nothing to cause double vision. Then suddenly while I was there the double vision returned to a mild degree. He could still not determine what was causing it, or if in fact I was even experiencing it! He referred me to a neuro-ophthalmologist!

I talked to the neuro-ophthalmologist on the phone, and explained what was happening in great detail. Without even seeing me, he suggested I wait a couple more weeks to see if there is any improvement. Long story short, the double vision duration in the morning became shorter, and shorter. Finally it was only taking about five minutes for it to go away. Then it was gone completely, and never came back. He was excellent at talking to me during this entire period, without ever seeing me, or charging me. When I asked him what he thought might have happened, he simply said, these things happen sometimes. It never returned, and it's been about 10 months!

I too thought I might have MS, but apparently not. It never hurts to get a second, or even a third opinion. MS is difficult to diagnose.

 

[smitty_bs]

My mother was diagnosed with MS in 1990. She's now 76 and still active. It is in some type of remission. She has good days and bad, but was never in a wheel chair. She needs a cane, walker or scooter to get around large open areas such as a mall. But when visiting she can walk from chair to chair, table, etc.

I don't believe she's ever had any serious vision issues. At least she's never spoke of it. Overall it hasn't really slowed her down. Her and my 77 year old dad still travel and are thankfully otherwise healthy.

 

[OLDFED]

A GOOD doctor...much research on the web...an MS support group...and NEVER GIVE UP! My daughter has it and it's mild, but she does have dry eye problems. Fortunately, she has a good doctor at Scripps Institute who is doing much for her. She's also being evaluated for lupus and Shogren's disease. Ask your physician about those too.

 

[cassidy]

MS

My 30 yr old daughter started with eye problems and the MS diagnosis was made almost immediately. She takes the injectible rx and does well. She did loose all of her excess weight which helps. She does have problems with crazy legs. Interesting fact is that she has total remission from when she gets pregnant till she stops nursing.
PS
Romneys wife has 5 boys and has lived with it for years.

 

[forresth]

Its an Auto-Immune Disease. Anything that triggers the immune system could effect it.

 

[NE450No2]

My wife has 4 sisters. We, sisters and husbands are all very close. One of my Sisters in Law has MS. As far as I know it has not effected her vision.

She does have good days and bad days. She was here at my place fishing on my pond, at a get together, just yesterday. She is a very good hunter/fisher.

Back in the day several years ago she regulary ate squirrel brains.
None of the other sisters did so...

This might be the cause for her MS. Do some research or Crubsfelt-Jacobs disease.
Very similar to mad cow disease, and very similar to the disease of people on some Pacific islands that eat the brains of their family members after they die.

Not saying this is the only cause...

 

[JustinL]

The prognosis for Multiple Sclerosis is much better than it was 20 years ago largely beacuse there were no disease-modifying treatments available until 1993. Today there are 7 FDA-approved meds (IIRC)and many more currently under investigation.

MS is thought to be a multifactorial disease mediated by your own body's immune system - you are genetically predisposed towards developing it and then exposed to a series of enviornmental triggers which then lead to the disease. The extact nature of that process is still unknown.

Basically it strips a substance called myelin (akin to the plastic coating on a wire) off of the neurons in your brain and spinal cord eventually, but not always, leading to the death of the neurons involved. Symptoms depend upon the part of the brain or spinal cord involved.

CJD & Kuru are prion diseases and not related to MS or demyelinating disesae in general.

 

[RCR]

Mother of my daughter has MS for 11 years now. Everything posted above is correct in her situation. Have her take the shots, they don't prevent MS but help for a better outcome if she has an exacerbation. Steroids ( usually solumedrol or pregnazone{pills}) help during an exacerbation.

I'll send a pm with some other advise.

Roger

 

[bobcat]

I appreciate all the insight, my wife had an MRI and a lumbar puncture, the 2 main tests for MS. SHe has the brain lesions and the protein in her spinal fluid that are the 2 key indicators of MS so the diagnosis is pretty firm. THe neurologist she's seeing is one of the best in the state, and keeps up with a research institute in Great Falls that is doing some cutting edge research on MS and other brain diseases. She's taking Copaxone now and continuing with the steroids. Her main symptoms seem to be the vision, she complains of a "buzzing" in her facial nerves, and fatigue. She's had horrible restless legs for years, to the point that pretty much keeps me awake. We had her eyes checked by an opthamalogist and he said that her eyes are medically fine.

As I say, I appreciate the thoughts and info, and CHAD I'll shoot you my wife's email when I get home tonight, I'm at work. My wife would appreciate sharing with a fellow sufferer.


Take care...