new here - scared, lonely, and depressed.

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

new here - scared, lonely, and depressed.

Postby SallyDC » Tue Apr 29, 2008 4:29 pm

hi,

let me first start by that, as of right this second, i still have yet to be diagnosed as having MS. my symptoms are strange and i'm having an MRI soon. i really have no place else to turn as it seems until i get a diagnosis my family and friends think i'm nuts and i shouldn't worry about it until i'm officially diagnosed (easier said than done). it all started in september after a very, very stressful summer (graduating college, starting a new and stressful job, moving into a new apt.) with "weird" vision. no pain, no real bluriness, something just seemed "off". i can't describe it. sometimes get slight double vision for distance viewing, but i noticed it's mainly after i've been staring at a computer screen all day so i usually put it to that. also whenever there's a bright light against a dark background (i.e. time on the microwave when lights are out in the kitchen) it's like the light source moves or something. all of this is happening in both eyes, and it's STILL going on now. I also have floaters in my right eye. not horrible, only get them when i look from the left to the center or left to right. no eye pain at all but vision does get a lot worse after i exercise or if i get really hot (SCREAMS MS to me) and also after drinking liquor or wine (beer for some reason doesn't affect me as much). saw my GP and optometrist, both dismissed me as fine. told it was anxiety. fast forward to three weeks ago, vision still bothering the crap out of me after 7 freaking months, went to an opthamalogist at a very well known hospital in DC, said didn't see any sign of optic neuritis or optic nerve inflammation but did see "dry eye." uhhh thanks. but he was very nice, explained the Uhthoff phenomenon (although i feel after the hours and hours upon research i knew just as much as he did about it) and said if it doesn't get better with eye drops and continues to get worse after heat he'll schedule me for an MRI. only other symptom i have is right before "that time of the month" (sorry guys!) my calves start to ache and almost feel weak but more just an aching feeling after i walk a lot, but again, only a few days a month. makes me think it's spasticity. i'm experiencing what i believe to be some short term memory loss and lack of concentration, but i can't help but feel that it's because i am CONSTANTLY, 24/7 thinking i have MS. My boss will be talking to me telling me to do something and "the MS" is all i can think about, so i guess it's no wonder i can't remember what she says. anyway, i'm just scared and confused. i've been doing a lot of research online (terrible for a hypochondriac like myself to do) and it seems that it's unusual for something like optic neuritis to last for this long without getting better, and also that it's in both eyes. seems usually it's just in one eye. anyway, i'm basically convinced it's MS since it gets worse with heat- and the fact that i'm a white, 22 year old female of northern european descent who grew up in an environment with cold winters (no family history of MS) I guess it could be Lyme disease but would the heat thing apply to that?! i'm so sorry it's so long but any type of response would be greatly appreciated. I'm just so depressed right now because I just moved into a fantastic apt. in the city, have a job i like, and i can't enjoy any of it. from reading some stories and your descriptions of your symptoms i know i have it very very easy right now, but i hate to think of what the future holds, esp. since the fact that i don't think i've experienced a "relapse" makes me think it's the progressive kind. i broke down in tears a couple times at work today just sad and exhausted from all of this. i look at my friends and think how freaking lucky they are to only worry about what bar they're going to and what they're going to wear b/c i remember those days when those sort of things were the only things i had to worry about and i miss them more than anything. my grandmother was right when she said "no matter what, if you have your health, you have everything." thinking about that right now is making me tear up. im so scared and sad. i try and think about how it could be worse (cancer, tumor, etc.) but it's still really hard - and i haven't even been officially diagnosed yet! i usually think of myself as an optimist but it's getting harder lately. again, i'm sorry this is so long, but if you've made it this far, THANK YOU!!! it means more than you can imagine.
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Postby Loriyas » Tue Apr 29, 2008 5:09 pm

Just wanted to say welcome. The more research you do the better you will understand. I hope you get some answers soon.
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Hi DC

Postby Artifishual » Tue Apr 29, 2008 6:08 pm

Sorry you have been feeling bad. One thing I have to say is that one MRI isn't going to dx you with ms it took my dr over a year to dx me. Also before you go to a neuro be sure that you have all your business in order. What I mean is look into disabilty insurance , life insurance, all insurance. If you get a Dx you will no longer be insurable. This is a mistake that I made. Wish I knew then what I know now. Anyway good luck :lol:
Last edited by Artifishual on Tue Apr 29, 2008 6:40 pm, edited 1 time in total.
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Postby Nenu » Tue Apr 29, 2008 6:18 pm

I disagree with the 1 MRI won't dx you. I had 1 MRI, and that lead to a neurologist, and lumbar puncture (spinal tap), blood work and dx.

This certainly isn't the case with everyone, but it was the case with me. Thankfully.

I did spend 2 years in agony (mostly emotional) not knowing what was wrong with me. The stress of 'not knowing' could have done me in eventually. It was the most horrendous period of my life to date. That's bad, when I did 5 years in University getting my degree, and the stress was no where near the stress I felt worrying about my health.

Best of luck to you in finding your answers. Keep at those doctors if they aren't being thorough, and if you feel in your gut that you know something more is involved and is being missed.
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Action plan for Sally

Postby lyndacarol » Tue Apr 29, 2008 6:25 pm

Sally--You sound intelligent, capable, and in a good place with a support group to deal with this situation. Welcome to this site; your research and contributions may help all of us here.

First, take a deep breath.

Second, if you are quite sure of your self-diagnosis (not usually a good thing to do), start your personal MS library with Multiple Sclerosis: The History of a Disease by T. Jock Murray, OC, MD. I think The Multiple Sclerosis Diet Book by Roy Swank, MD, PhD and Barbara Dugan is a good second book to have.

Third, have a thorough physical exam and ask for any kind of blood test possible (including a fasting serum insulin test--I am known at this website to be obsessed with insulin!). If you will have an MRI, ask that the radiologist make a special note of the sinuses. Many with MS report sinus problems (including myself). Ask for a copy of all your test results for your own file.

Fourth, from this day forward, eat a healthy diet. In my opinion, this means removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour (in fact, all carbs so far as possible) from your diet.

And best wishes. We all cry and are fearful at times, but good support and info are found here.
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Postby Terry » Tue Apr 29, 2008 6:46 pm

Hi Sally.
Odd to me... I had a doctor's appointment today and told him about my vision as of late. I have moments when I can't focus on things far away. I see double or just cannot focus it in. I mostly notice it outside, only once inside, because it is mostly when I try to see things that are far off. I also told him that it feels confusing- like I know I should be able to see what I am trying to see. I'm with you on this one.

Cognative issues in MS are real. But the worrying cannot be helping. Try to stop if you can. Lift your chin, put your shoulders back, and take a deep breath. Tell yourself that no matter what, you'll be fine. I believe that us MSers are a tough lot.

As far as the family goes, even after diagnosis, they might have a hard time understanding. It is hard for others to comprehend what we feel if we look like we're fine.

Get out there with your friends. Decide what to wear, and go have fun.

You are not alone, Sally.

Terry
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Postby jimmylegs » Tue Apr 29, 2008 8:40 pm

hey there, welcome, it is a nasty scary time but you are in the right place to get lots of information!!
i totally agree with LC about taking action on dietary habits, because it's something you can accomplish right away, before any docs make up their mind. could give you some peace of mind and for sure, the stress and anxiety are not helping!

if you can get some minor blood work thru your GP, that can help you make some decisions. as LC is the resident insulin guru, i'm about nutritional biochem. there is a list of "usual suspects" for low or deficient nutrients in ms that you might be interested in. let me know if you want me to post a quick list with typical ms values and target values for comparison!

i am quite interested in the fact that you notice more problems at "that time", when you are certainly losing more nutrients from your system than at other times. not to mention from the stress.

the first thing i get searching "dry eye" is estrogen deficiency. strange though, it seems like replacement therapy can be to blame too. there's a good endocrine contingent on here for you to chat with if u choose!

hormones aside, for diet it looks like a good omega 3 boost, whether dietary or supplementary, could be helpful with the dry eye. magnesium for the muscles, esp. at the dreaded time. for me it helps with the regular cramps as well as other muscle issues - hope you find some relief!
Last edited by jimmylegs on Wed Apr 30, 2008 6:01 pm, edited 1 time in total.
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Postby SallyDC » Wed Apr 30, 2008 5:31 am

thank you all soooo much for your responses. it's extremely comforting to have people acknowledge my worries as legitimate worries. I have an amazing family, and i feel so incredibly lucky, but i've been frustrated because esp. my mother, she seems to try and pass it off as something else - and I talked (well, cried) on the phone to my dad last night, and he made me realize the only reason she's doing this is because until we officially have a diagnosis, she doesn't want to admit that her daughter could ultimately have a chronic disease. Makes complete sense - but i guess i never thought of it that way!

and thank you so much for all of your advice. I keep telling myself that no matter what -even if it is MS- I'm just determined to become the healthiest version of myself that I can be. I recently signed up for unlimited monthly pass to a great yoga studio by my apt., i already try to limit the artificial sweeteners (that aspartame stuff scares me!), and there's a great local farmers market near my apt. where i've started getting fresh fruits and vegetables weekly. but i want to do more. I'll be honest - i could stand to lose a few pounds i guess - but i also am determined to become a runner. I'm obviously not at the stage of the disease yet where my walking ability is affected, and i've always wanted to become a runner - so that's what i'm going to do, while i still can. i'm determined. i've also been thinking for awhile about signing up for the 3 day, 60 mile breast cancer walk in DC in October with a friend. I am a healthy 23 year old with working legs and there's no reason I shouldn't be able to do that! I also, in september when the stress of everything started (i originally was convinced it was a tumor) i started taking a weekly meditation class, which, while i'm not usually one for that kind of stuff, has helped some i think.


and i will mention those tests to my doctors. I had a pretty thorough blood work up back in september when this hell started - everything checked out fine. Sugar, blood cell count, chem panel, but i do also want to be tested for B12 deficiency. For awhile i thought i was having what seemed to be carpal tunnel (lean on my elbows a lot at the computer at work, told it was from pressure on the ulnar nerve) and started taking B supplements lately and it's gone. Not sure if it's the placebo effect (??) though - thinking it's supposed to help when it really doesn't! Fortunately my dad works in the medical field (does cancer research- he reminds me i need to be grateful i don't have that!) and so through the connections and friends he's made for the past 30 years, he said if it comes down to it he'll help find me the best neurologist he can. Apparently my area (DC) is a good place to be in for MS, where apparently it's rampant and there are lots of resources for it.


finally- and this may sound a little cheesy- but has anyone been reading or participating in the Eckhart Tolle/Oprah book club for "A New Earth?" i haven't really gotten into it yet but from the little bit i have read and seen on the online shows - it seems to be great advice and wisdom about living for each day. it's made me realize that, despite the weird vision, right now, right this second, i am perfectly capable of doing everything my peers are capable of doing, and that tomorrow isn't promised for anyone - MS or not! i also have to realize (easier said than done) that the only person or thing that can let MS ruin my life is ME. if i dont' let these worries bother me- they won't!

Again, thank you all for your support, kind words, and advice. It means the world to me!! :) Sally
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Postby Andesine » Wed Apr 30, 2008 6:00 am

Sally, my MS dx started with Double Vision, light sensitivity, weird sort of pre migraine shapes and light that never progressed further. I then went on to get the balance problems. That was Feb this year.

First off, don't worry about it or you'll make yourself worse. Keep a positive attitude and fight the darn thing. I was offered loads of assistance through the groups who believe in learning to live with your disease but that's just not me. I don't want to live with it, I want to get rid of it.

Luckily I was directed to the wonderful people over at CPn Help and looked into the combined antibiotics protocol which I started 2 weeks ago.

Family/friends won't understand. Most people know very little about MS and what they do know is the worst of it. They automatically assume you need a wheelchair immediately and they'd better start rearranging the house for you. In the first week I was offered 3 chairs and an electric cart. (Thought I might accept the last one and see if I could supercharge it for fun).

My mother's first comment was "As a parent, you always think you'll die before your children". I told her it could be arranged. :?

Expect some very odd comments because you will get them. Just understand them for what they are, ignorance of the real issues, fear for you and a complete loss of what to say to make you feel better.

Interestingly, once they have got over the initial shock and reactions, and worked out that you're not immediately going to keel over, they then go the opposite way, especially, if like me, you're not badly and obviously affected. You then get the "What do you mean you can't......." or the "I thought you were taking pills for that, have you still got it?"

You can't win. LOL.

Anyway, you've found sympathetic ears here and options. Stick with us. I'm new on here but have been on the CPn Help forum for a while and my experience is, you'll get realistic help and guidance and some real friends.

Chin Up!
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Postby jimmylegs » Wed Apr 30, 2008 6:28 am

that's interesting about your carpal thing sally, i have that too. i heard the b-vitamins could help but i was a little worried about over-doing the b6. i don't think it has helped me yet, but i've been dx'd with ms for almost 2.5 yrs now, and they only figured out in the last 6 months or so that my ongoing hand issues, along with increasing wrist/forearm issues, were actually carpal tunnel. so maybe i'm too far gone except for surgery. i keep trying! i finally found a vague hint of a reference saying that b6 is best for carpal tunnel as long as there is nothing underlying like for instance a zinc deficiency. which i do have (me and many other ms patients). so hopefully when my zinc is back in line the b-complex including 6 will do me some good.

that's great that you're determined! it's the best way to be. it does take the family a while to get over the news. i guess sometimes they don't get the idea of "support group" for a while because they're absorbing the shock to their own system. sounds like some take it too far! wheelchairs at first whiff?

andesine: i hear you loud and clear! one phone call to the local ms society in my 'confused and frightened' stage, put me off permanently. never say never i guess, but so far at least!
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Postby Nenu » Wed Apr 30, 2008 7:01 am

Andesine wrote:Sally, my MS dx started with Double Vision, light sensitivity, weird sort of pre migraine shapes and light that never progressed further.


Do you mean you never developed the migraine following the shapes? I certainly experienced this myself, back in 2001. Years before my MS dx.

This is an excellent example of what happened in my case...Imagine this in 1 eye, and that's what would come on and then disappear, over approx 30 minutes (as shown in this particular example)

Image
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vision problems

Postby Artifishual » Wed Apr 30, 2008 7:07 am

When I first started having vision ploblems the most obvious was color saturation. Red was the most noticable. Close one eye and look at a red object and then do the same with the other eye. This is the first signs of Optic Neuritis. http://www.mult-sclerosis.org/opticneuritis.html
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Postby Nenu » Wed Apr 30, 2008 7:16 am

Ahh, I have 'reduced' vision at range at best now (prior to last summer, I had 20/20 vision), but never a blurring quite that drastic. Nor have I noticed color issues.

Eye floaters are my #1 bane with my eyes currently. Sure they're painless, but they're so annoying lol.
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Postby Artifishual » Wed Apr 30, 2008 7:22 am

When I first started having problems I went almost completly blind in my left eye. This along with evrything else was my first major flare up. After 5 days of methylprednisolone all or mostly all went back to normal. After my secound major flare up I was started on a monthly dose of methylprednisolone. Glad to be free of that now.
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Postby Artifishual » Wed Apr 30, 2008 7:25 am

Sorry for the thread hijack Sallydc but sounds like alot of good advice here. Good luck and God bless. Arti
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