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Multiple Sclerosis Message Board

Multiple Sclerosis Board Index

Dear One and All,
Have just finished reading through a fair number of your posts- some of them made me cry others made me laugh- however the underlying theme in this board seems to me to keep on trying and try and keep your chin (collective)chins) up!

This is all excellent advice! Having been through a number of harrowing experiences in the last 12 yrs- I thought I may share some of them with you all- may find someone who has been in the same boat or going through the same problems now :)

Warning Long post-OK This may take a while!!

Med History

Have had 3 missed abortions(20wks,9wks,12wks-needed d&c) and 1 miscarriage (9wks) Have two children boy and girl (or young adults) age 20&16

Lived a very active life moved to Scotland for 6yrs, back to Australia and was a swimming instructor- the usual hectic life of getting kids to school running around family get-togethers, gardening,running own business etc. :)

Age 30 -Babysitting for a friend one Sat evening, and had a bit of numbness in my left leg- wasn't bothered by it as had a very bad varicose vein and since I was supposed to get it taken out yrs before (to busy-after birth of son) never thought anymore about it.
The next day again busy, had church in the morning and gardening afternoon(spraying for bindii- a knoxious weed with prickles in Oz), family visitors back from holiday in Scotland come over for dinner.So as per usual running around like a nutter- bathing kids making dinner etc.
Got to bed about 11 and woke up with a funny sort of 'noise' in my head like a bang or knocking noise and sparkling lights and feeling sick at 12 oclock, had a bit of tingling and numbness on chin and lips- I said to my husband to ring the poisions centre as I thought I may have poisoned myself with the spray- only thing I could think of that I had done differently- though I had worn longsleeves and had stripped off and taken a shower immediately after doing it.
Poisons Centre said that the kind of chemical I had used could cause numbness if spilt on skin- said to go back to sleep and that it would wear off. So we did- I woke up in the morning and could not move my left hand side, all my face was numb and both my legs were very heavy, so my husband got the kids off to school and me off to my local GP(half carrying and lifting me into the car)- he was very concerned- I was kind of blase about the whole thing I guess either I wasn't aware or just fogged- though I did know who I was and where I was. The doctor had a fit and after pricking me all over with a safety pin declared he wanted an ambulance to take me to the ER though feeling was beginning to return to my left arm and a bit on my right leg- I didn't want that ( I don't know why) so we went off in the car to the ER- he had notified the only nuerologist in our city to meet me there and run some tests.
So the next week I spent in hospital- with a drip,warfarin or some other blood thinning agent, had a cat scan, cat scan with a dye(which made me violently ill- iodine based) then an angiogram to check the heart and the brain- with another dye( again made me violently ill) nothing showed up. Although I had a rash on my leg all the blood tests came back as clear and no lupus.

They sent me home after a week, using two braced sticks to walk and when going out a wheelchair- eventually some of the symtoms disappeared completely, others stayed with me permanantly, later after doing things like shopping or swimming long distances they would return- along with an incredible tiredness and weakness.
The doctors still didn't know what it all was- some said migraines - wow a heck of migraine to cause all this- they adopted the usual wait and see attitude. I would go to see the neurologist and he would say this test was negative that test was negative and so it went on- the evoked response, also an asophogeal ( camera tube down the throat to check for clots in back of heart and lungs) then next came the MRI- had to go to Sydney for this ( we lived about 2hrs away)
This took 6months for all of these tests to be done
Went to visit the specialist for the MRI results - this time I went by myself my husband had come with me for everything else - I was really beginning to think that they would never find any answers- as my symptoms had almost gone away and I was driving again I really wasn't worried - I had even picked up the kids from school and thought I would take them with me age 8 and 4
I was absolutely stunned when my neurologist said that the MRI scann had come back with several white dots on it- if I had been 70 or 80yrs he said it would be understandable, however at the age of 30 and with my symptoms it would more than likely be MS though not a hundred percent sure either.
Next came the standard stock frase of-" not to worry too much you may never have another attack again and some people have gone through life knowing they have MS but after an autopsy doctors have discovered scar tissue, also 'if you are not in a wheelchair in the first five years then it would be likely that you won't be in one forever' :confused:

I was so shocked I couldn't answer him or ask any question- the only thing I vaguely knew about MS was that my daughter had done the MS read -a- thon

He then handed me a few brochures about the local MS society and ushered me out of the office- I don't remember how I drove home- but there were tears tripping down my face and the kids were very quiet in the back seat.

My husband was away working in Sydney at the time- so I called all the family cousins my aunt and my parents and sister and they cam over after dinner and we had tea and coffee and discussed it all- my most up to date encyclopedia showed that 'MS lasted for about 10-15 yrs and life expectancy rarely made 20yrs'- very encouraging! :rolleyes: with a few bits about wheel chair bound etc.
So then I vowed I would find everything and all things about this disease- and did I really have it ? (classic denial- I can still do everything I used to do!) despite being very tired at the end of it all!
Not only that but I would not let myself deteriate into the person who arrived in the hospital 6 months ago- and if it should be the case despite my best efforts- I would still make my life worth living and my family would be my anchor.

So as there is much more to this epic- as my family like to tease me about my letters and emails as I am a very chatty person- it comes out in my emails

I will write some more tomorrow- but no I am NOT in a wheelchair or need any sticks still, I have had relapses off and on for the past 11yrs- my most recent 9 weeks ago- which instead of the general numbness I have now got the burning stinging electric shock-like pain- and the sort of muzziness or foglike brain- which also comes and goes.No I am not on any of the beta ferons though my docotor is urging me to do so- I have faithfully taken Evening Primrose Oil for the past 9 yrs- after discovering the study done in England and reading up on the Dr Swank study as well-(this before all of the 'new medications' were available)
I had another MRI done last year and there have been NO changes in the past 10 yrs- I have "dawsons fingers"
I am not as active as I used to be the last five years I have slowed down a bit- though went overseas to Scotland England Ireland Wales and Canada to visit my family and my husbands family for 9 weeks- 2 1/2 years ago- we have had family to stay for the past five years- aunts uncles my sister and now family from Switzerland.

Family History

After doing genealogy I discovered my G grandmother on the maternal Irish side of the family after being bedridden for a year died from "disease of the spinal cord" in 1910- agreed by neurologist to be MS. Four years ago my mother was diagnosed with Lupus (skin type) and then 2yrs ago with probable early stages of MS- my sister has had chronic fatigue for 14yrs after getting glandular fever and is a diabetic as well as having Hashimotos.
It turns out some of my mothers side of the family have hypothiriodism as well at least one aunt and a cousin
I too was diagnosed with Hashimotos 2yrs ago

So I think that is more than enough for now :D
Sorry if it is tooo long- but thanks for reading it all.
Kindest regards


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