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Mistree

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Joined
Jul 17, 2013
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Diagnosis
07/1999
Country
UK
State
Devon, Totnes
:roll: Hi Everybody,

I have never joined a forum before but this looks pretty straight forward so, even a techno nerd such as myself, may be able to participate.

I do literally have chronic fatigue although my diagnosis is Multiple Sclerosis, diagnosed in 1999. I have always been dubious of this diagnosis, for many pertinent reasons, although my neurologists have never taken my concerns seriously. Lately, my neurologist is conceding and saying "wellll, I guess you have mild ms with a post viral condition being your main problem". AFTER 14 YEARS!

Thanks! All the worrying about relapses etc, really hasn't helped manage my condition that I told him all along was not MS. I know lots of folk with MS and never felt I shared much in the way of symptoms. Also, fatigue seemed to be unbearable for me and not SUCH a big dilemma for any of them.

No one took up my cause. I am pretty angry about this as life has been really tough but now my kids are independent, I have a little chance to mourn, rest and, hopefully, get a life back!

The reason I am particularly angry is because when I originally went into hospital in 1999, my friend asked me to get tested for Lymes Disease as I walked my dog in a park full of dear and known to harbour the boreleosis? tick. As I recovered my walking, hearing, sight (thank God) my family assumed this test was carried out. Indeed they told me it was negative.

When I remembered 2 months before this episode, I had discovered a strange bullseye rash on my tummy which I showed to my husband as it was a perfect circle with a dot in the middle. A busy woman, I thought it would just heal on it's own and ignored it as it just itched a bit.

Also, 2 months after I got out of hospital, my dog developed a kidney disease and an ulcer on his leg and died. I assumed he was mourning for me as I could no longer walk him regularly.

Years later, I visited a homeopath and he told me "you don't have MS, you have LYMEs disease" ! Naturally, I had my original hospital notes checked for the original test and my GP told me, the test was never actually done. This sent me into and angry spell as after this long, there's apparently nothing I can do. Quite frankly I'm so exhausted, I can't be bothered, anyhow :( Occassionally I think: What an unfortunate series of events and what a waste of life. I have lost faith in most doctors and lost faith in anything, really (I hope this is peri-manopause wielding it's negative power and, I'm hoping when this eventually subsides, I may get a renewed vigour?

I used to be so positive but after 14 years of exhaustion and neglect of my condition, I am losing hope.

Anyone got any good news?

Good to meet you all, good to whinge and moan, good to have a space to actually talk to folk who understand. My heart goes out to you all.

Mistree
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
Mistree,
Sorry you had to go without getting a early diagnosis of lymes disease when sometimes that can stop the progress before it becomes full blown.
I hope you are on some type of medication for this. But don't rule out the MS, because the testing you had done that proved that diagnosis is different testing than what you have for lymes.

But let's deal with some of the symptoms that your facing now. Some can be helped by following the advice here, as far as the pain and sleeping, and fatigue problems. The biggest thing is trying to avoid stress, by trying to do to much. Life slows to a turtle pace with fibro which means do not multi-task anymore. Get the most important things done first and then work on others a bit at a time. Try to get family to help you, and do not insist on doing it all by yourself.

If you have depression, which most of us do have to some degree or another, do yourself a favor and speak to a mental health counseler. if you can not afford a private therapist, go to your local mental health in your town. Most are billed with a sliding scale method meaning very cheap. If you have insurance then shop around till you find someone you like and can trust.
It is helpful to have someone to talk with that can teach you lots of coping skills. worth the money spent for mental well-being.

By the way welcome to the forum. :)
 
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