Whats going to happen to me
Today Ive had the biggest shock of my life, Ill explain. Today at 2:30 pm I went to an eye Doctor for the first time in 9 years. I ll explain the history of my left eye & the diagnosis I got today.
Ive had problems with my left eye for a few years. I have seen about 2 different Eye Doctors in the past & they could never figure out what was wrong with my left eye. It was always a mystery since it would always come & go out of the blue, & for no apparent reason at all. It first started in Oct, of 1989, I can remember it as if it were just yesterday. It started out that I wasnt able to focus with my left eye, then it started to become very extreme at times to the point I wasnt able to focus at all. It started without any warning, & without any other symptoms at all. Then just as quickly as it started it went away, it disappeared without a trace. Then again in 1999 it started all over again, & again without any warning & without any other symptoms. Althought, this time it would come & go. When it would start again it would stick with me for weeks at a time, & then disappear & I would finally get some relief. Again I went to another eye Doctor at the time & after several tests later he said all he could think it could be was something called Nystagmous ( I m not spelling it right so please dont quote me on this). I was told nothing could be done about it, that it had to do with something wrong with the base of my brain. Then in 2001 I started feeling fatigued & then soon after that I began to be in pain. The pain seemed to increase over time. I went thro what seemed like hundreds of tests for more then a year & every specialist I saw all said the same thing. They believed I had Lupus!! I was diagnosed with an auto immune diease. I believed I had Lupus for years, I even took the meds for it for years. Although nothing ever seemed to help how I felt or anything else for that matter. Never once did I ever put two & two together, nor did anyone else until today. Just recently my eye seemed to get worse so I finally went to my Doctor about it. He filed a referel to an eye doctor. I had rescheduled for months until today. I just didnt see the point in going since I felt I already knew what was wrong & there was nothing that could be done about it, so why go was what I thought. Until It started getting so bad I could hardly drive anymore let alone work anymore. So today was the day I finally went, my appointment was today at 2:30pm. When I got there, I explained everything that had been happening to me for years & explain what the other doctor had claimed I had. He proceeded to run a bunch of tests on me without explaination as to why or what he was doing. He asked me about my history as far as any health problems & what medications I was taking. He then explained to me that the Doctor I had seen in the past was very wrong in his diagnosis. He proceeded to tell me that he has only seen this problem in MS patients & that he was going to be calling my family Doctor tomorrow to let him know his diagnosis. I was in shock, I wasnt sure at first what he was trying to tell me. So he told me bluntly you have MS. He is having my doctor send me to a specialist. I m thankful I finally know for sure what it is that is causing me all these problems all these years. But also I am so scared at the sametime. What does my future hold for me? Whats going to happen to me? All this time I thought I had Lupus, & here all along its been MS the entire time. I feel let down by all the doctors!! Whats going to happen to me? All I know is I am very frightened!!
Take care, MM XOXO
Ive had problems with my left eye for a few years. I have seen about 2 different Eye Doctors in the past & they could never figure out what was wrong with my left eye. It was always a mystery since it would always come & go out of the blue, & for no apparent reason at all. It first started in Oct, of 1989, I can remember it as if it were just yesterday. It started out that I wasnt able to focus with my left eye, then it started to become very extreme at times to the point I wasnt able to focus at all. It started without any warning, & without any other symptoms at all. Then just as quickly as it started it went away, it disappeared without a trace. Then again in 1999 it started all over again, & again without any warning & without any other symptoms. Althought, this time it would come & go. When it would start again it would stick with me for weeks at a time, & then disappear & I would finally get some relief. Again I went to another eye Doctor at the time & after several tests later he said all he could think it could be was something called Nystagmous ( I m not spelling it right so please dont quote me on this). I was told nothing could be done about it, that it had to do with something wrong with the base of my brain. Then in 2001 I started feeling fatigued & then soon after that I began to be in pain. The pain seemed to increase over time. I went thro what seemed like hundreds of tests for more then a year & every specialist I saw all said the same thing. They believed I had Lupus!! I was diagnosed with an auto immune diease. I believed I had Lupus for years, I even took the meds for it for years. Although nothing ever seemed to help how I felt or anything else for that matter. Never once did I ever put two & two together, nor did anyone else until today. Just recently my eye seemed to get worse so I finally went to my Doctor about it. He filed a referel to an eye doctor. I had rescheduled for months until today. I just didnt see the point in going since I felt I already knew what was wrong & there was nothing that could be done about it, so why go was what I thought. Until It started getting so bad I could hardly drive anymore let alone work anymore. So today was the day I finally went, my appointment was today at 2:30pm. When I got there, I explained everything that had been happening to me for years & explain what the other doctor had claimed I had. He proceeded to run a bunch of tests on me without explaination as to why or what he was doing. He asked me about my history as far as any health problems & what medications I was taking. He then explained to me that the Doctor I had seen in the past was very wrong in his diagnosis. He proceeded to tell me that he has only seen this problem in MS patients & that he was going to be calling my family Doctor tomorrow to let him know his diagnosis. I was in shock, I wasnt sure at first what he was trying to tell me. So he told me bluntly you have MS. He is having my doctor send me to a specialist. I m thankful I finally know for sure what it is that is causing me all these problems all these years. But also I am so scared at the sametime. What does my future hold for me? Whats going to happen to me? All this time I thought I had Lupus, & here all along its been MS the entire time. I feel let down by all the doctors!! Whats going to happen to me? All I know is I am very frightened!!
Take care, MM XOXO
posted by Mystical Me at 12:04 AM
33 Comments:
My Mom had MS for 25 years before she was diagnosed correctly; it was vision problems and an eye doctor that caught hers as well. Had she not been looking for an excuse to sit down on the couch and watch TV for the rest of her life, she would have been fine!
You will be learning and reading a lot for the next little while; don't be afraid to ask questions and make them explain things!
There are two kinds of MS, one that "stair steps" slowly (attack and recover) and one where they aren't as far apart but aren't as severe either. There are a lot of treatments now that actually help.
I have a friend at work, now in his 30's with a wife who was diagnosed in her mid 20's, after the birth of their first child. She had a second, is active, vibrant, working, and if you hadn't been told you'd never know!
I have a cousin in his 50's who was diagnosed 15 years ago; he still runs marathons!
Don't be afraid, OK?
Thinking of you...
alan
I think my mom has MS too.
my mom had that problem for about 10 years.
There's nothing to worry about.
http://www.ninds.nih.gov/disorders/multiple_sclerosis/multiple_sclerosis.htm
Oh honey I’m so sorry. I’m not in California so I can’t refer you to any doctors. I included a link so you can read about this. Does this have anything to do with your connective tissue disorder? I really hope that you are able to get through this! If there is anything that I can do just ask!
Please Take Care
MA
ALan, Thank you for letting me know all this. It does give me alot more hope then I had all day yesterday. Can you find out for me if your mother was in alot of pain all the time or not? Because I have had alot of problems with intense pain, & the past few months it only seems to be getting worse. All the flare ups seem to be lasting longer too. I would so appreciate it if you would find this out for me. I have alot of reading to do for what can help me maintain my life. Thank you for commenting about this, it has really helped me to not be so afraid. Thank you!! XOXO
Javier,Thank you, I think I might have over reacted yesterday because I just had no idea what I was up against. I was thinking wheelchair & picturing me drooling sitting in it, LOL. So hopefully thats not the case. Thank you!!
Outlaw, You are so awesome, I cant thank you enough. You have given me more hope just telling me about your friends. I promise I wont give up, because I dont want this to get me to the point of no return. Also, your right, I am only afraid because I dont know whats ahead in my future with this. I m trying to stay strong & not be afraid of the unknown, but sometimes its hard not to think what it might be like in a few years. But I want to focus more on keeping what life I have, instead of stressing all the time, itll only make it worse. Thank you so very much & I want you to know you are an awesome person. I think your ex-friend is so stupid for letting you go as a friend out of jealousy. She is missing out on a wonderful friend. I am grateful your a friend to me, even though its only thro email. Your friendship means the world to me, so thank you. I hope all is well with you Outlaw & do take care.
Thank you all for being here for me, giving me advice, & telling me your own personal exsperiances with someone you know who has this. What you have all shared with me has made me stronger knowing I will be ok & what I invisioned might not be my path at all, lol. I was thinking wheelchair, & drooling all day, lol. So thank you for giving me hope. Take care, & know I love you guys. Love always, MM XOXO
MA, Thank you so much sweetheart. Yes, it does have to do with the CTD ( Connetic tissue dieases ). It also goes along the with them (doctors)thinking for two years now that I havr Lupus. But now everything is pointing to MS. I have had several high possitive test with some type of enzimes in my muscles & I m supposed to be getting tested again soon. Ive also had several other tests come out positive but they wanted to test me again before labeling me with anything. Ive been told it can take years before they know exactly what autoimmune diease it is whether it be Lupus or MS. But the doctor I saw yesterday says he would put his career on the line, in other words he thinks thats what is wrong with me. I never thought an eye doctor could ever be the one who would ever diagnos me with something like this. It blew me away!!
But again thank you, & thank you for always being here for me thro out everything. Love you woman!! Take care, MM XOXOXOXO
I am so sorry, sweetie. I'm sure you are in shock and also in a strange way relieved to know what has been bothering you all this time. A friend I used to work with's wife has MS, and she has been living with this ever since they met in high school. The more information you can get on the subject the better...and like I always say (and do) alternative medicine can work wonders as well. I am always here if you need to talk, day or night. You can call me anytime. love you!! xoxo
Jlee, I was actually thinking about calling you last night, I wasnt able to sleep. I really needed to talk to someone last night. I would have called you, but I didnt want to wake you up, I figured you needed your rest for work today. Thankfully, I m able to type it all down on here. It really helped typing it, it calmed me enough so I was able to relax finally. Ive been stressing on this since 4pm yesterday. I m still in shock, & its almost as if I cant believe this is real or that its even happening to me. It does explain a lot. But it keeps running thro my mind, why me!?. Not that I wish this on anyone, because I dont. I wouldnt wish this on my worst enemy, even if I had one, lol. But for some reason my mind is having a real hard time processing this. I just dont want to believe it.
I started looking online today, searching for information on it, & it just blows me away. Finally I know why all these things have been happening to me all this time. I never even thought it could be this. I was finally starting to come to the realization that I had to live with Lupus. But now it feels like the rug has just been pulled right out from under me again. UGH!!
I want to thank you Jlee for being here for me. I know you say I can call you at anytime, but I dont want to wake you up. I have an idea, Ill email you whenever I need to talk & if your up you can let me know & then I ll call you. Does that sound ok? I m sorry if I m sounding like a big baby. I really do need to buck up alittle more. I m embarrased for being such a baby over this, but then at the sametime I dont care. It all just sucks. I knew I didnt want to go to the eye Doctor yesterday, UGH.
Thank you sweety for being here for me. I love you woman!! Take care!! Love always, MM XOXOXO
Poor girl, I'm sorry to hear about your problem. I am completely ignorant about MS, but with today's technology I'm sure you'll be fine.
Have strength my sweet girl.
Thank you Poly, Your so awesome. So when we leaving to the mountains? ;)
Take care sweetheart & I promise Im not going down without a fight. XOXO
MM, I'm so sorry to hear about this! If there's anything good, it's that you know what you're dealing with now and can fight this head-on.
Thanks for sharing this difficult experience. You're very sweet, and I wish you all the best. I know you'll find a way to pull through this.
Oh, MM, I'm so sorry you're going through this. Look at the wonderful responses you are getting from people who are familiar with this though, who know people who have it, and who are doing well. You will be ok, too. And you have an outlet here to talk about it, and to get support from your readers.
MM sweetie I'm glad you went to the eye doctor!!! Now that you have a proper diagnosis, you can deal with this and beat it!!!
I agree with the other commenters that you have this outlet to vent on and relay your frustrations and concerns over what is happening to you. And we will always be here to support you whatever you need and whatever we can do!!
Just be strong (I know you will) and learn all you can about MS and the effects it has on you.
I can't imagine going all of the things that you have health wise and having the wrong diagnosis...
Dealing with what you have already, I'll bet you are stronger than you give yourself credit for.
Take care sweetie. Email me if you need another person to lean on...
Hey MM!! Well I am glad the doctor's finally realized what was going on so you may be able to get the proper treatment. I wish I could be there for you through this trialing period!! IF YOU EVER NEED ANYTHING, never hesitate to contact me. I have a blackberry so i get my email 24/7. I care about you a lot, you are one of the sweetest people I know!!! XOXOXO
You are in my thoughts. Hang in there and know some of us in blogland are praying for ya...
Peace
You should be glad you didn't see a proctologist. No telling what he would have determined....
That is horrible to here that. Thankfully, if it is showing up this late, most likely it is not going to be as serious as it could be. I really hope you are ok and don't get worse....
Hi myst- I'm relly sorry to hear of this problem you've been having.
I hope it just stays as a minor
annoyance.
It seems as we age there are certain physical problems most of us experience- I know I got my aches and pains from a lifetime of
injuries.
I guess it's part of the "human experience" and we have to play the cards we're dealt. Good luck
and prayers for you, dear girl.
SPG, Thank you sweetheart for all your kind words. After all the research I did yesterday I feel so much better about my future & I m not as afraid as I was. Thank you for always being a sweetheart. ;)
Sadielady, Your so right!! It feels so awesome to have such wonderful friends here, they have all been so helpful to me thro out all this. It really touches my heart that everyone cares to help me thro this. I cant thank everyone enough for all the information & all their well wishes. Thanks to everyones well wishes & all the information I am not afraid of the unknown anymore.
I almost didnt post about it because I didnt want to look like a baby or look as though I m seeking some attention. But I am really glad I did post about it because it has helped me tremedously. Thank you sweety, you are so awesome. XOXOXO
Green, At first I regreted going to the eye Doctor, but now I m glad. Your right now I can battle this head on. I no longer have to questioned why is this happening to me. Thank you for being here for me sweetheart. I have to say I love everyone on here, everyone has been so supportive & caring. Thank you again!!
Princess, I think its kind of funny it took an eye doctor to finally diagnos me. Ive seen many specialist that had said they believe it to be Lupus,lol. I m still in shock, I would never have guess an EYE DOCTOR would diagnos me, lol. Thank you sweety for always being here for me. How are you doing? Youve been on my mind for awhile now & Ive been praying everything is going good for you. I love you woman, you are an awesome friend, & for that I thank you. Please take care & know you will always be in my heart forever. I will keep everyone posted about my progress. XOXOX
Paul, Thank you so very much!! I have to say everyone here has really touched my heart with all your help thro all this. So thank you for being here for me. XOXO
Squid, LMAO!! I love how you always make me laugh. I believe laughing is the best medicine for anything thing thats wrong. SO thank you sweety. XOXO
Mister underhill, Your so right, I was even thinking about that as well. Thank you for wishing me well. Oh yeah welcome to my blog. Thank you!! :)
Polyman, Thank you sweety, & your so right. Its part of life, & we all have our struggles. I will be fine, & I will be better now that they know what is the problem. Now Ill be able to get the right treatment. Thanks again sweetheart!! XOXOX
Take care, MM XOXOXOXOXOXO
Laughter is not the best medicine if you have a broken rib...
Hey MM. I just came to see how things have been going. Life is so crazy. This situation just proves it. Thanks for explaining things to me. I hope all goes well. I really admire the fact that you are such a free spirit. Again I hope all goes well. Please keep us posted on any developments.
MA
Squid, You got me there!! ;) LOL!!
MA, Your awesome!! Thank you for always being such a sweetheart to me & always being such a huge help to me. Love Ya Mary Alice!!
Take care, MM XOXOXOXOXO
I don't know anything about MS. But I hope you'll be OK. Hold on!
Take care.
Happy Mother's Day to one of the greatest Mom's I know!! I hope you are having a great day you deserve it!! love ya girlie!!
DP, Thanks, I know it will workout. As long as I stay active I should be fine. Which trust me I plan on it, :). I hope all works out for you with Law. You & Outlaw deserve only the best.
Yoda, Thanks, I dont know much about it either. But I do know I should be fine. I will make sure of it. ;)
Outlaw, Thank you!! Oneday soon Ill be able to say that to you. Take care & I do hope all works out the way you want it too. If not its going to be hard to blow up the army, so I can get your man back, ;).
Princess, Thank you!! ALl I plan on doing is resting today, since I partied all day yesterday, UGH. Thanks again.
Take care, MM XOXO
Happy Mothers Day
mm: Happy Mother's Day my dear friend.
MA, DP, & Green, Thank you!!
La Chitelier, Is it possible to get the number to where your friend is going? Thank you for giving me this advice. I do plan on using it!!
Take care, MM XOXOX
That really sucks, man!
All I can say is, keep yourself as healthy as you can in other respects. Maybe some day they will find a treatment or a cure and you want to be around for that.
I think you should look at alternative types of treatment as well as conventional. For instance, go to a health food store--a really good one--and ask them what they would do.
I would also go to a hypnotherapist and tell him what is going on and get hypnotized to maintain the highest possible state of mind.
In other words, in every element that you can control, I would try to be "100%."
I think alan makes a good point which I think is, don't succomb to the disease and let it beat you.
I think you should maybe meditate and visualize the disease as a little man, and you are going to fight this little man and win.
(All this, of course, IN ADDITION to conventional health care.)
Hey MM ...
I know you can beat this, just keep the faith and stay active and focused.
Belated Happy Mother's Day!
Zen wizard, Your so awesome, thank you sweetheart. I plan on doing it all!! I m going to fight this like its a little weak old man. Just like you said, but more weak, lol. ;) Thank you for your insight & thoughts, its all very much helpful to me so again I thank you.
SE, Thanks sweetheart!! I was wondering where you went. I miss you sweetheart!! XOXO
Take care, MM XOXO
Where'd I go?
I've been a bit busy with life as it's been dealt to me on a daily basis. As you know I manage the Security Department for a 300 apartment retirement community and assisted living facility here in Florida.
Yet in order to have some assemblance of a personal life, it has forced me to schedule my shifts in such a way, as working ten days straight so as to get some personal time off.
That personal time off is often spent on the road going to the various Native American Pow Wows around Central Florida. Now as summer begins to arrive, the "Pow Wow Trail" will head up north, so my "free time" will be spent preparing for this upcoming hurricane season around the house and hopefully getting in some additonal tent camping.
In fact as a direct result of the number of Pow Wows I have been to this spring season, I have commitments for the upcoming fall and next spring season to hold various positions of Keeper of the Circle, Master of Ceremonies and Head Veteran.
Back to the topic of your Blog post ... if you were closer (drat, drat, drat that you aren't) ... I would likely share with you what I recently did with one of the elderly residents of the retirement community where I work. The gentleman in subject is a good friend, as you are. So I took a few moments of deep meditation and prayer, then concecrated and blessed through the Creator's Power and Intent through me as the Creator's instrument a special coin I have had for a few years. The day before he was to have open heart surgery, I spoke to his wife, we prayed and I gifted her this special coin. I instructed her to give it to him to hold up until it was time to go into surgery and then to give it to him again when she was able to be with him in recovery.
To make a long story short ... the gentleman's recovery astounded the doctors ... he spent one day after surgery in the cardiac intensive care unit, three days in a general room in the hospital, and now in his fifth day in a rehab facility, soon to come back home.
With that said, along with this message/post I am sending along with it the Power and Intent of Creator's Healing for you. That healing may not necessarily be that of this phyiscal robe we call a body, but a healing of the Spirit that this physical robe encompasses.
Mitakuye Oyasin,
Silver Eagle
Hi MM, just read your blog, be brave, I'll say a prayer for you tonight. Mark
Hi MM - browsed over here from Lipstick's blog. My sister has had MS for 10 years - got diagnosed from eye problems. She has aggressive, but Rebif has done wonders for her. Tomorrow I am doing the MS Walk and will think of you.
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