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Old 10-17-2009, 08:31 PM   #1
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SharonRae HB User
Question Years Of Multiple Sclerosis

I have had MS for 33 years, and I feel I am doing well. I am ambulitory and doing things for myself, mostly. I guess why I am writing is that, when you read in the help and postings, the most information is regarding those who are 'newly diagnosised'....I just feel that time the health care professionals believe we (the older effected ones) are set, and have the problems undercontrol. I have a Neurologist I see once a year, there is a Support group but due to my lack of driving ability, and the distance I have not been to the Meetings for many years. So I am forgotten...(sigh).
I just don't want to feel alone, but have been in that catagory for the duration of my disease.
I am sure that you know the many problems in being diagonised is diffiecult... Took 10 years, of being denied of my symptoms.. told they were "all in my head" duh..............well, In 1976 there was no MRI, and there was no accurate way to say for sure .... but when the MRI came about....in 1989 (close).. then my Dx. was positive.
My heart just needs to know if there are others who are sitting out there, and having to "battle this monster in silence"?
I want to stand up and Scream.....at times...because I don't want to be in this position, but no one does. I try to make a happy life around the problems....but....................just to hear from others who can say..... Hang in there, we are a large group........stand tall. thank you for listening to me get this off my chest..Sharon

 
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Old 10-17-2009, 08:38 PM   #2
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MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Years Of Multiplesclerosis

Welcome Sharon and thank you for sharing your story!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 10-18-2009, 10:02 AM   #3
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Years Of Multiple Sclerosis

Welcome Sharon. I do not think you need to feel you are doing this alone. Those of us who havent had to deal with MS as long as you, are still dealing with it. Of course, these days, the disease is taken a different direction, and is much more manageable, recognizable and even acceptable.

This board is a wonderful place to share- someone is always here and listening. And, in all honesty, not many of us are "alone" in our disease as you seem to feel you are. Its not necessary for you to feel that way and even if you only join us virtually (online) we are still here for you. YOURE NOT ALONE.

Let us know if there is something we can offer you as far as advice, etc.

I work with housebound people in my work. I work with Hospice patients. I see people every single day who are WAY WORSE OFF THEN WE WILL EVER BE and that keeps me positive. Maybe you can find a way to do some volunteer work or help others so that you feel more "needed"? It really helps me to keep things in perspective when I see others who need help more then I do...

Take care.
Nikki
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RRMS- dx 05

 
Old 10-18-2009, 09:41 PM   #4
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Re: Years Of Multiple Sclerosis

Thank you Niki I have had such suportive responses to my post, that I do feel welcome and that feels so good.
Yes for a while, about 5 years I volunteered at the local Health care center, one day a week, and that did make me feel good and confident. The job got to be more than I could handle so I had to turn that job over to others. But I have good memories, and hopefully helping in a small way.
But right now, it seems my life is circled around doing activities of daily living, and trying to manage a 'home'. But I do a lot of craft things that I do love, and makes me feel 'proud and happy' because it makes others happy. I plan to stay here in this web site, and learn the ins and outs.
I noticed the charts of progression, so need to learn how to use the charts.
Talk to you another time.... bed time now.
Sharon

 
Old 10-19-2009, 01:12 PM   #5
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Re: Years Of Multiple Sclerosis

Sharon, continue doing whatever makes you feel good!! Crafts are an excellent way to continue using the hands, the coordination part of the brain and keeping busy! Maybe someday youll start a home based business and sell your items!!

Im not entirely sure which "charts of progresion" you were referring to, but remember one thing about MS. Its a a very individualized disease- it doesnt affect any two people in exactly the same way. So, because one person progresses at one rate, doesnt mean that others will as well......your progresion is pre-determined, but there are thngs you can do about it, such as continuing to do your crafts, stimulate your brain- staying active (as much as possible) eating right, taking the right supplements or vitamins (whatever your doctor recommends) and of course feeling good overall about your life and your body! MS doesnt have to stop you from being a productive person or a useful person. You can do as much as YOU CAN DO- but I guarantee that if you are doing your best, thats all anyone can do!

I wish you well and stay healthy!
Nikki
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Old 10-27-2009, 02:01 PM   #6
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DominicaLover HB User
Re: Years Of Multiple Sclerosis

Nikki,

You summarized my outlook perfectly. I'm at about 10 years Diagnosed (I don't focus on when really), doing well, and have always forced myself to keep my condition in perspective. It could be way worse. I've seen family members ravaged by cancer (gulp) and thank God that I am able to walk, talk and enjoy life with only partial limitations.

I'm new to this board, and am excited to be in a like community of people

Cheers,

Kerwin

 
Old 11-02-2009, 05:17 PM   #7
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busymom09 HB User
Re: Years Of Multiplesclerosis

MSJayhawk, I noticed you mentioned you were MED Free - how???

 
Old 11-02-2009, 10:24 PM   #8
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Re: Years Of Multiplesclerosis

Busymom, I am currently "progressive" which means no meds will work for me, BUT I have been med free since diagnosis in 1982. I watch what I eat, I exercises, I avoid stress.......etc. I know most of my triggers and I also know what remedies I have that will help me. I attended one pity-party in 1982, but it lasted only 3 days. I have been too busy to ever go back to that party!

I battle daily disabilities nowadays, but I had a nice 20 year career and started a family. I think that I have been richly blessed by my God. I also try to focus on other things and not dwell on my MS. My neuro said that med-free works for me. 32 years since onset and I have no regrets. A Med-Free Life can be wonderful.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 11-18-2009, 11:54 AM   #9
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tinabean34 HB User
Re: Years Of Multiple Sclerosis

Oh my I am sorry for your sitution. I think I have MS but it hasn't been clearly diagnosed yet. I know it is a hard one to get a final diagnosis. I think you are very strong and brave to get up every day to face this demon head on. Your story is a powerful one, how about sharing in a blog or something. I know you feel like you are all alone but you aren't. I feel that way too and I don't even know what I have. A lot of us are living in silence and feel like no one is there. I wish it didn't have to happen to anyone. No one thinks much of it until it happens to them. Do hot showers or baths make you feel bad? I just don't understand why that would bug me. Can you share some of your symptoms. It would be helpful.
Tina

 
Old 11-21-2009, 05:25 PM   #10
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SharonRae HB User
Re: Years Of Multiple Sclerosis

Hello Tina.. yes living in mistery is not easy, that is for sure. I hope that a diagnosis can be found, at least there is a solid reason for the strange feelings, and all the stuff that goes along with it.
You asked if hot baths or showers bother me.. yes,....it is due to the fact that the hot water raises the core temperature, and can make the nerves that are effects in the brain to ...act up. So it is important to keep a level temp, try not to get over heated. Right now in this time of the year don't have to worry about that much.

Oh there is such things that make my symptoms act up, but... what can ya do about them??? I mean my Neurologist told me to avoid stress. UH.excuse me.. I am still alive and have to live in this world..go figure. But I do know that when I get tired, as going to town, getting very tired, puts me to bed the second day. It is not good, and it is just a fact of life for me. So I really try to pace myself.. in my housework, cooking and just activity of daily living. When I am tired, I go to bed. I don't try to keep going, or working through it, or I make myself much worse.

So tell me about you.. age, and are you married... children? I have one daughter who lives next door to us, she has severe medical problems.. but that is another 'book'. I had a step son who passed away 2 years ago from brain cancer. Life is not easy for anyone....

Do you have a Neurologist, and is he/she looking for the causes for you problems..?? How long have you been effected? It is had to get them 'on the ball looking aggessively, as it is such a difficult disease to diagnois.

I wish you well, and do hope we can talk again....
I do not get on the cmputer everyday, so if I am slow in reply, you will know why.
Smiles to you' Sharon

Last edited by moderator2; 11-21-2009 at 05:52 PM. Reason: posted contact info - please read the posting rules

 
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