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Multiple Sclerosis Message Board


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:) :wave: Hello What's next !

I am an old board member , since 2002 , my Medical History Records at my hospital almost need a truck to carry them , I've been through so much , but I want to tell you something of my experience , maybe something I say might help jog your memory , to do with MS ?..

When I was only young , 16 or so , I had weird sensations happen , like when walking down the street , the footpath felt like it came up close to my face , real weird ..

At work in a supermarket , I walked to the left with no control , into the food shelves ,.. I went to a specialist , he did tests , sent me to an Optician , he never told me anything ,

( the optician knew I had Optic Nerve damage in my right eye , but it was not revealed then, as I later found out I needed more than one positive episode of symptoms before any Specialist could acertain it was definitely MS..)
as so many other neuro diseases can imitate MS.?...

I continued on life , got married , nothing more happened , until 10 years later , I was travelling in our car , glanced to the right out the window , and OUCH!! sharp pain in my right eye , like glass ..

Went to GP , again , nothing was reavealed what she thought it was , it went away ,..

next symptom extreme back pain, then later , dreadful pains in my arms , nothing I had done to cause it !!..

it would be so deep , into the bones , .. I used to sit rocking and crying through the night on my own , painkillers wouldn't help .


Then numbness in my hands and fingers , got sent to hospital for a check , told Carpal Tunnel Syndrome , I said no to the operation , glad
now I did cos it wasn't CT!...

I remember walking down the street , had to call into a neighbours house as I had no control of my bladder all of a sudden; at the same time my fingers went numb !..

Picking up pegs when hanging out washing was a feat !!.. pins when sewing , lifting the kettle , doing up buttons , all those little things we take for granted ..

Got a silly reply from my GP when I told him.. he either had no idea , or thought i was stupid , or didn't want to reveal his suspicion of MS to me .

In 1989 , I was up a ladder wallpapering , it was a hot day , all of a sudden , I felt like someone had turned a switch off of my energy , just drained me , ..

Went to GP, she did all the MS tests , checking to see if I could feel pin pricks , ice , tuning fork vibrations on my skin etc..

She never told me AGAIN what she suspected was wrong .. " What you've got won't kill you " she said as i left her office !.. Huh!!

2 weeks later , my left fingers went numb on an angle , right up to my elbow , the right was ok , ..

my feet felt tingly , pins and needles , then went up the fronts of my legs , .. so I looked up an Encyclopaedia ,.. it said either .. Syphilis or MS.!!

Later feelings like electric shocks going up my spine to the back of my head when I bent my head down ( this is called 'L'Hermittes Syndrome ).. funny feeling ,

Walking up the street , or through shops , I couldn't keep going , felt like I just wanted to sit or lie down , all my energy gone .
.
So I went to MS centre ..MS Field Officer said .. Go back to your GP and demand to see a Specialist !!.

He said " Possible MS!".. I was never given an MRI in those days we didn't have a Scanner in our City , ..
Symptoms cleared , so I carried on , forgot MS ..

10 years went by ,

then in 2000 , doing exercise to lose weight , I had a numb breast , thought

" Oh well , here we go again !! MS rearing it's ugly head again !"..

To cut it short , an MRI Scan shocked the Neurologist , ..

it turned out to be massive calcification had grown out of control for years , , compressing my Spinal Cord ,...

I had to have lots of MRI Scans , 3 operations to remove it all ..

But the MRI scan also showed an MS Lesion on my brain .. however , that didn't worry the Specialists , the Calcification was a worse problem ,

as it left me on crutches and subsequently in a wheelchair , messages not being able to get down the cord to the legs etc....

, I also had Optic Neuritis again , pain in my eye , felt like a blob ,

my vision was affected , but it went away after 4 weeks or so ,..had eye checks over past 2 years ,

Eventually, in 2004 another MRI showed up an MS plaque on my Spinal Cord ,

at the thorasic Level , T11..

just 2 vertebrae down from where the calcification was operated on at T8 & T9,!..

I have subsequently been in hospital twice last year on Steroids to dampen down inflammation of my spinal cord , caused , they say , by the MS!..

Like you , I have burnng legs , and feet , alternating wih freezing cold legs ; .. especially in bed , along with bad spasms , very stiff legs , at times ,

I have been given meds to help the burning /cold , as well with nerve damage pain from the ops ,...

My husband & I still wonder sometimes if it's scar tissue from the ops causing the problem , but who knows !..

I just stay positive , get on with my life as best as possible ..

So , you see , I can remember a lot of the strange things that happened to me , "What Next" ,.

Can I suggest , if it's any help to you , or anyone else reading this , to WRITE DOWN all the funny /strange little things that happen to you , over the many years ,

as they may help jog your memory for future references when relating medical problems to Specialists .. you never know if it may be a help...

By the way , I have to add , I went numb "down below" , internally , and still am ..

but I'm going to seek help through a sex therapist and a Spinal Unit Hospital Dr if possible ..." where there's a will there's a way !! eh?"

I hope I may have jogged your memory maybe or given you a little help in some way ?..

Would love to hear from you or anyone else in the same situation ?..

Good Luck !!

Love to Everyone .. Belle ... :angel: xxxxx





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