recently diagnosed with MS, struggling with optical neuritis, any tips for coping?

[0rganism]

in brief, September was a lousy month, where i spent most of my time in bed because i'd lost balance and coordination on the left side of my body. October and November were pants, too, in which i racked up some obscene medical bills trying to figure out what was going on, to find out that i have MS. Oh well, could be worse -- heck, i feared it was worse, hearing it was MS was almost a relief.

Now, the dizziness has subsided a fair bit, i can walk and type with both hands again. however, this last week, i got hit with near-blindness in my right eye. At first it was panic-inducing, but i'm coming to terms with it slowly, learning to compensate for my lack of depth perception. i suspect this too shall pass (and maybe reoccur from time to time). If anyone has any advice for dealing with the effects i'd appreciate it. Actually, i'd welcome any general advice for how to deal with a set of seemingly-random symptoms which range from mild annoyance to downright crippling that can come on at any time.

[FlaGranny]

1. I have MS too.

I have a rather mild form, but have had lifelong weird symptoms - seeing dark objects move in my peripheral vision, various episodes of nerve pain, clumsiness, and vertigo. It's hard to recount them all. My vision is affected the most on testing, but not to the point of actual loss of vision and thankfully, to this point, no optical neuritis. There's not much you can do except cope. Are you taking an anti-MS drug and/or prednisone? Your MS sounds severe enough to give them a try, as I'm sure your neurologist has suggested.

One thing I would mention is that I was recently diagnosed with celiac disease - at the AGE OF 71! It had never occurred to me I could have such a thing, but I did have many of the symptoms. After being diagnosed with celiac I started researching it and found that it can mimic MS, even down to causing plaques in the brain (which I do have). So now I'm not 100% certain whether my MS could have been caused by gluten intolerance. Of course I could have both celiac and MS - they are both autoimmune diseases and autoimmune diseases can be concurrent (and genetic). Celiac disease is much easier to treat - just avoid gluten. Most of the symptoms of celiac are caused by vitamin deficiencies - thus the wide range of symptoms and the difficulty diagnosing it. If you have ANY symptoms of celiac, I would suggest you ask to be tested.

[newfie11]

2. I am curious

if you don't mind, could you tell me how old you were when diagnosed with ms?

[FlaGranny]

6. I think I was about 60

when diagnosed, although I've had symptoms since I was a teenager. I have some balance problems, especially when I stand up to walk. It takes me a few steps to stop walking like a drunk. If I'm holding something in my hand I'll drop it unless I'm actually thinking about and making an effort to hold it, but my reflexes are actually quite good. The thing that causes me the most concern is swallowing difficulties. I can't eat without concentrating on swallowing. If I forget I choke and that can be frightening. I also have trouble articulating words and that is annoying to me. I'm very lucky that it progresses extremely slowly. Now that I'm 71 it is maybe a tiny bit worse than it was when I was diagnosed. My neurologist offered me treatment, but agrees that my MS is mild enough that, at my age, I can do without it and it is not likely to get much worse at this stage. Since being diagnosed with celiac disease, I will probably have to wait a year or two to see if the MS symptoms improve with treatment of the celiac.

[newfie11]

7. Thank you for the reply

I was curious as a doctor told me years ago anyone over 50 is to old to get MS. I thought it was a crock then and you just proved it.

How did they diagnose you? Was it a brain MRI?

[FlaGranny]

8. Yes, I was diagnosed with an MRI.

Maybe the doctor is right about not getting MS over age 50 BUT - and this is a big but - you can have it for many years, as I did, without being diagnosed and you can't be too old to get diagnosed. Doctors can have a one track mind. It is ridiculous to refuse to do a workup for a problem because you're too old to "get it" - because maybe you've always had it. I'm glad my docs have been a bit more open minded.

[newfie11]

9. Yes you make a very valued point. Maybe it has been there but mild.

[Downwinder]

10. For 20 years I kept telling Doctors something was wrong.

They just said "It was all in my head." They were right. I had to end up in the Emergency room to get an MRI. The Radiologists report, "multiple lesions both hemispheres." Then it still took 2 additional years to get a diagnosis and medication.

[ProfessorGAC]

18. It's A Crock

The probabilities go down, as the illness tends to hit when the immune system is more active. Since most people have some reduction in immune activity as they age, the hyperimmunity aspects of MS become less likely. But, there is no such thing as "too old to get MS".

I was 36 when i was diagnosed, so i'm not personally proof that it's only a young person's disease, but i have done a lot of data analysis for NMSS, and have seen lots and lots of evidence that there is no way anything regarding MS can be ruled out due to age.
GAC

[blondie58]

28. my mother has a friend who

Was diagnosed at age 60. She had symptoms for years

[Downwinder]

3. My optical neuritis symptoms were totally

different from yours. I could not see the first two letters of any words then after time they came back blue. now fifteen years later they turn blue when I am over tired. There were some other effects, like not being able to see the moon or a cement truck coming toward me. My vision also broke up like a digital TV losing its signal. For a time I could not read the Walmart sign painted on the side of the building. Time heals. Also I found muscle knots in my feet between the heel and the arch. I don't if it had an effect, but I had them massaged out and now the worst remaining effect is quad vision.

Are you on interferon? I find it very helpful both physically and mentally.

[0rganism]

4. i'm lucky it's just in one eye right now

If i were to describe the effect, it's a lot like how in the Lord of the Rings movies when Frodo would put on the one ring, the world would get all swept out, blurry and distorted, but one eye only, and it's fuzzy and sparkly. Everything's a lot darker, there's no peripheral vision to speak of, the eye's basically useless for seeing things -- if both my eyes were like that, i'm sure i'd qualify as legally blind.

i don't know if the drugs that have been recommended so far contain interferon, nice to know you got some relief with it. i've recently heard some good things about low-dose naltrexone, so i'm going to try that -- will post my results to this board.

Thanks for the tip about the massage, too, that sounds like something i could try right away that doesn't have any possible side effects.

[Downwinder]

5. Everything has been symetrical for me. If one eye is bad the other is just the same.

If I forget how to use one leg to walk, the other one has the same problem.

I like to compare it to a computer. I have BIOS control over peripherals, but occasionally I lose the subroutines necessary to make them do anything useful.

My balance is good in that I know when I am out of balance however I do not have the communications and muscular control to get in or stay in balance without choreographing every movement. Even screwing the lid on a jar requires direct thought.

Have you had any speech problems? I found that when I couldn't talk I could still handle memorized formatted items (poems, songs, etc.)

Music was a big help to get my gait back. Everything we do repeatedly is rhythmic. The music replaced my internal clock which is damaged. I also lost temporary memory registers which are slowly returning.

[Warpy]

11. The only good thing about MS is that a lot of people are working

on new drugs and treatments for it. The recent discovery that it actually begins in the brain will likely lead to even more treatments down the road.

A lot of people find a few weeks of ugly drugs can buy them remissions that can last from weeks to months to occasionally years. So it's not as hopeless as it was.

As for the optic problems, I've gone partially blind twice, losing first all my near vision 8 years ago and losing my distance vision last year. I still stick my thumb into anything I'm filling to check the level of liquid even though I can see it quite well now.

With treatment, your vision problems should be limited. I hope so, anyway.

And yes, you can be diagnosed with MS later in life, especially when you've been blowing off mild symptoms of it for decades.

[FlaGranny]

12. Hi Warpy

What do you think about the connection between celiac and MS? I found a research report (from Spain?) that said that celiac may cause plaques in the brain. The probability that if you have one disease you may have the other is much greater than by chance.

I wouldn't have guessed in a million years I had celiac, because everything I had read about it said it caused loss of weight and failure to thrive. I never had a problem that way - just the opposite. Now, most of the symptoms lists are including weight GAIN. It seems that some people increase their appetite in order to obtain the vitamins and minerals lost from malabsorption. Since I have been avoiding gluten for about 2 months, I have noticed a definite decrease in appetite.

Interestingly, the symptoms of both diseases can be nearly identical. The symptoms are so varied and unusual for both that many times people are told it is all in their head or that they have IBS.

The parallels are significant and I would suggest to anyone with MS, if they have any GI symptoms at all, ask to get tested for celiac. That includes gas, belching, abdominal pain, diarrhea or constipation, etc., even if it is sporadic and comes and goes. The symptoms are so insidious that over time you forget about them and accept them as normal when they are not.

[Warpy]

13. MS is characterized by exacerbation and remission

making it one of those prime diseases to be exploited by quacks.

If you have been properly diagnosed as having celiac disease, by all means treat it. Just don't assume that celiac has anything to do with MS or vice versa. Both are serious illnesses that have separate diagnoses and separate treatments.

Be very careful about reading preliminary research. It most often does not pan out.

[FlaGranny]

14. Certainly, I have had proper diagnoses for both problems.

I've had multiple brain MRIs and the proper lab work for gluten intolerance. Actually, I also have mild Sjogren's (self diagnosed because of dry eyes/mouth). Many studies have proven that one autoimmune disease can occur in combination with another. These are two of the articles that caused me to take notice.
http://www.medscape.com/viewarticle/738740
http://www.ncbi.nlm.nih.gov/pubmed/21385364

This article also talks about concurrent autoimmune diseases. When you compare the symptoms of MS and celiac you can see that one could possibly be mistaken for the other as there are overlapping symptoms. I find it interesting and wonder if the inflammation and vitamin/mineral deficiencies of celiac disease might possibly be a contributor to MS in some people.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001280/

I still think that if a person is diagnosed with MS and if that person has any of the symptoms of celiac, they should ask to be tested. If the testing is positive, gluten avoidance will certainly improve their health, if not their MS (and may help their MS).

All this testing would be tough without insurance. The celiac testing is around $800.

Edit: I often wonder if most or all autoimmune diseases have the same underlying cause.

[tru]

26. sjogrens

One can have dry eyes and dry mouth without having Sjogrens. A simple blood test is pretty accurate.

Another thing to look for if one has MS is Graves disease, which affects primarily the thyroid and eyes.

[tavalon]

30. I was diagnosed with Celiac 13 years ago

And I've had asthma my whole life. I used to joke that my body has been trying to take me out from the get go, and so far I'm winning.
But it rings a little hollow now that I broke my shoulder and started a workup that appears to be headed for an MS diagnosis. Enough already. The joke is old.

[ProfessorGAC]

19. But, Not All Forms

The cerebellar form is most often characterized by continuous symptoms. That's why it differs from the more common relapse/remit form of MS.

And, secondary progressive MS does not have exacerbations. It is nearly always a continuous loss of function and increase in severity of symptoms.

You're right about R&R MS, and since that's the form most patients have, your statement is mostly correct. But not completely.

[Boudica the Lyoness]

20. Sarcoidosis has been associated with celiac disease.

Sarcoidosis is a autoimmune disease as well.

I have sarcoidosis and many people with sarc are going wheat/gluten free and finding it is helping them. I avoided wheat for awhile and I started to feel better. Over Christmas I ate wheat again and I soon felt sicker..headache, worse fatigue and pain. I'm giving up wheat now even though I have never had any GI symptoms.

Coming to think of it....from what I have read, people with sarc seem to have no GI symptoms yet feel better when they are gluten free.

[tpsbmam]

15. Ah, coping.....

I'm sorry to hear you've joined the ranks of MSers. The good news is that the disease is somewhat manageable for most of us. Yeah, when I was diagnosed the doc thought it was a brain tumor or MS -- I hoped like hell for MS!

I was diagnosed 25 years ago. I managed to finish my Ph.D. after I was diagnosed, and that included going to grad school full-time and working half-time. I'm amazed now at my determination to finish! I had a few whopper exacerbations in there that threatened my ability to finish, but I just kept pushing through. The worst was during my internship year when I had a totally disabling bout of vertigo and missed almost 3 weeks of work -- I damn near didn't finish, which would have killed getting the Ph.D. But I managed to finish, even going to work at one point with another exacerbation getting my solu-medrol infusions early in the morning and racing to work for the rest of the day, hiding the IV line in my arm! My neurologist wasn't thrilled that I was continuing to push so hard during an exacerbation but he understood and worked with me.

MS did finally win out and I had to retire early, but I had a good run at it for a decade and a half!

Coping....how we cope is influenced by so many things. I was lucky enough to come from a family where whining was frowned upon. One was expected to just get on with getting on when the going got rough. It helped me greatly when it came to getting on with having a professional life. I didn't do as well with having a "life" in addition, though. When I wasn't working, I was THOROUGHLY exhausted! I'd get home from work, take care of my dogs & play with them for a bit, feed them and me and crash by 8 p.m. Weekends were spend doing errands and SLEEPING, which I learned was common for working folks with MS. It seriously impeded my private life, even to the extent of irritating friends and co-workers when I refused to go out for social occasions. I simply didn't have the energy -- I could do one or the other, not both.

I actually found a toughness in me I didn't know I had. There was a steely determination not to let any of it get in my way of meeting my goals, at least professionally. I frankly didn't have the energy to get overwhelmed by my lack of socializing -- everything was focused on doing a job I LOVED, and doing it well.

Even little things can make a difference when it comes to coping. I had a great neurologist -- he said, "don't get overtired, avoid stress & get on with your life." The first two made me laugh -- that just wasn't going to happen! And the last was great advice. My only prior experience with MS had been knowing a friend of my parents, who was a very successful senior editor at a New York publishing house. Someone asked me to talk to a young woman who'd been diagnosed with MS and thought her life was over, despite having few symptoms at the time. The only two people she knew with MS were severely disabled and her impression is MS had ruined their lives. And when she was diagnosed, the fool neurologist said, "I'd rather tell you anything but this....." Just the messages from the two different neurologists could make a major difference in how someone faces the disease!

I guess I got by by focusing on what I could do, not what I couldn't. "I can't" still isn't something you hear come out of my mouth too often, though I'm pretty physically challenged these days -- I use a walker for short distances and wheelchair for longer distances. I had one whopper exacerbation in 2009 that took my legs out. I was already walking with a walker due to an exacerbation the year before where my balance left and never quite came back. Well, in 2009 my legs simply gave out -- I was suddenly a paraplegic! Some of the strength has returned, but not enough to keep me out of a wheelchair.

One of the things I find is I have an advantage over lots of folks who get thrown by little things happening. I learned to cope with the unexpected over the years. I frankly learned the hard way that "shit happens," and had to learn to get comfortable with unexpected shit that life throws at people with MS....you're just going along, minding your own business and then WTF, you can't see one morning! You learn not to panic. When my legs went out from under me, local firefighters actually had to come up and lift me back into bed (I'd gotten up to go to the bathroom at about 3 a.m.). I declined going to the hospital at the time, pretty much saying, "meh, it's MS....I may be walking fine in the morning. I'll wait and see if my legs are still kaput then." They were still kaput and I did end up calling an ambulance and getting hospitalized. But by then I was so used to exacerbations, it could have gone either way and I was pretty relaxed about the whole thing. This is life....for everyone. Some get luckier than others, but eventually, everyone will have to face crappy stuff coming their way. I'm pretty used to it at this point and not much throws me!

I think I'd encourage to always keep pushing, not to let MS take more of your life than it has to. Let the unpredictability inform you.....life is so random, so unpredictable in truth for all of us, find ways to embrace it into your worldview. It's helped me have a richer, deeper view of the world, of the randomness of being. When I look at the big picture, I'm still one of the lucky ones. I could be a Jew in 1939 Germany. I could have been a Rwandan woman watching her children starve to death & facing horrific torture. I could have been faced with all kinds of horrors that so many have faced in life. I worked in the medical field -- I had 9-year-old patients die, spending most of their young lives battling horrific illnesses going through one horrendous treatment after another, willing the next just in the hope that they'd win and live. Yep, I'm one of the lucky ones, and that outlook has helped me through many rough times!

[CountAllVotes]

16. several bouts of rather severe ON

Last edited Fri Dec 23, 2011, 12:59 AM - Edit history (1)

Two times it blinded me and I've been left with permanent visual problems (blind spots like holes in swiss cheese is how it looks). Overtime, the other eye compensates for it but it is still there.

Best things to do are:

Consult with an opthamologist to find out how extensive the damage is
Keep a chart documenting improvement (it will give you hope)
Invest in a good pair of sunglasses
Stay out of the direct sunlight
Get plenty of rest
Protect your eyes whenever possible
Stay off of the computer a lot as it puts a huge strain on the eyes

They say you go through a time when you get ON (optical neuritis) and that eventually your "outgrow it". I don't know if that is true or not as I've gone as long as 10 years between bouts of it.

It is a wicked disease that takes all it can get and gives nothing in return but a lot of people questioning you and telling you how great you look.

[ProfessorGAC]

17. I've Had MS for Nearly 19 Years

My optic disruption never went away, but for a lot of MS pateints it's a come and go thing.

Not wanting to bum you out, but my vision never came back in my left eye. I've got peripheral vision, but nothing down the center. If you've ever seen a shot of what macular degeneration looks like to the patient, that's what my left eye vision looks like.

But, i will tell you that i adapted completely. I still play golf to a 4 handicap despite being blind in one eye. It has truly barely affected my life.

And the good part is that my eyeglass appointments last half as long!

Hang in there. MS is an illness that the vast majority of sufferers can manage.

[benld74]

21. I had optic neuritis back in '97,,,

other symptoms followed, tingling in legs etc. Internet diagnosed myself with MS. My doc wasnt convinced until the spinal tap(which he was LOUSY at!) confirmed. Didnt take the drugs funtil around 2001. Have been on them since. One relapse. But I consider myself luckier than most.
My drive and ambition is still there. My attitude is still there, getting worse my wife seems to think. PAtience wears thins at times.
But I am lucky, it could be worse.

[0rganism]

22. update

My situation is improving -- not perfect, not by a long shot, but definitely improved. My right eye vision, while weaker than the left eye, has basically come back to the point where i can rely on it for depth perception and assistance in reading. The poster (CountAllVotes) who suggested sunglasses was absolutely right on: vision is much worse in strong light, it's like the nerve just can't process the brightness and overloads into a blur.

Only standout symptom now is some pressure headaches when defecating, but not unmanageable -- more dull ache than sharp pain.

For treatment, this time around, I'm avoiding the expensive drugs. Going with low-dose naltrexone and a very cleaned-up diet -- no grain-fed meats, no yeasts (i miss beer , but lots of greens and veggies. If the symptoms come back like they were last year, though, I'm going to have to suck it up and go with the Real Medicine.

[ProfessorGAC]

24. Glad To hear It

My vision never came back in my left eye. So, i'm considered legally blind in that eye. But, i'm ok in the other eye, so i'm ok.

Hang in there.
GAC

[jxnmsdemguy65]

23. Please try coconut oil!

http://www.msworld.org/forum/showthread.php?t=113191

[McCamy Taylor]

25. Not all optic neuritis is MS. I had optic neuritis during a case of rat bite fever

the spirillum (milder type). The spiral type bacteria probably affected my eye the same way that the more famous syphilus spiral bacteria can affect the nerves. My neurologist insisted that I get another brain MRI---it was not different from the one I had had ten years before for my migraine headaches. I took my antibiotics and added on some Vit B 12 because my level was borderline low. My optic neuritis resolved in a couple of months.

The first symptom I noticed was that my own art had different colors depending upon which eye looked at it. In optic neuritis dark reds get washed out. In addition, central vision is weakened---meaning that it becomes hard to read with the affected eye. And lights appear dimmer with the affected eye. All simple tests you can do at home if you wonder if you have it.

Even people who have idiopathic optic neuritis only have a chance of developing MS. It is not a 100% correlation. And things besides MS---like some infections, low Vit B 12, diabetes---can cause it. So be sure to get a check up. And do not confuse migraine occular events with optic neuritis----flashing lights--and do not confuse the much more serious and treatable temporal artertis---headaches with transient one sided blindness or else you could go blind.

In my medical practice, I see more optic neuritis related to subacute thyroiditis----thyroid antibodies positive with only slightly increased thyroid hormone levels, a condition that generally leads to low thyroid over time. I also see inflammatory bowel disease, like Chron's associated with the thyroid antibodies, suggesting that there may be a protein in the eyes, thyroid and bowel that are similiar.

Also beware of sleep apnea, that great immitator, that is often associated with migraine headaches and fibromyaligia and which can cause TIAs or even strokes if it is bad enough. I have seen patients with optic neuritis who did not have MS but who did have serious OSA.

[sense]

27. Dr. Terry Wahls

has a TED talk here... she eats a paleo diet and is living much better with MS. No more wheelchair and she's very active now. She's got a protocol to follow and has helped many, many people. Very inspiring and could help!

http://www.paleoplan.com/2012/02-15/terry-wahls-ted-talk-and-ms-in-general/

[MysticLynx]

29. Immune Disorders

Auto-Immune 'flare ups' are caused by an inappropiate response by your immune system. Think asthma- same principle- keep a diary and determine what your 'triggers' are - you will never be able to live completly asymptomatic, but you can greatly decrease your flare ups and thier severity by avoiding your triggers