Feeling lost

New diagnosis and before diagnosis
1

Hello Everyone,

I am new to the forum and have enjoyed reading many of the posts . My troubles have been ongoing for many years(measles encephalitis aged 5 and epilepsey ,last siezure 14 years ago)I am 53 now and have been suffering leg pain and weakness,strange tingling pins and needles in fingers and toes and walking in a “different” way.

My consultant at the time, 14 years ago said a spinal manipulation under general anaesthetic would relieve the pressure and tightness and a team of physios would rededucate me in walking correctly.The pain after the procedure was horrendus,physios did’nt or could’nt help. Referred to a pain clinic ,conclusion of which was “its just pain ,adapt life to live with it”

I have been doing incredibly well in doing this,telling the enemy within (pain) that there was only one winner,and it’s going to be me,so do one . I never darkened my doctors door again and paid for private physio,bowen technique,alexander technique.accupuncture,gym, bootcamp etc etc.

Last year I had 2 very nasty and serious infections and was on a antibiotic drip in hospital on both occasions.Since then my symptoms have got a whole lot worse I have to use a walking stick most of the time ,cant cross a road by myself,bladder and bowel difficulties ,pain in right leg,falling a lot,confusion and feeling like things are spinning,but not dizzy.

Brain scan showed dawsons fingers ,u fibres and other lesions,back scan has also showed lesions, lumbar puncture next week.The neuro said that I have M.S and have had it for a long time.she is going to be in touch again once all the results are in. Perhaps then I will know whats going on.I am still working, reduced hours, due to fantastic employers.

Do you think I may get answers soon ? I have 2 beautiful grandchildren and had never imagined this was going to happen.I want to spend time having picnics and playing in the park with them,not thinking of whats easily accessible and a safe place for me to have them.Boring

I am sorry to moan and winge and whine ,it’s not my style,but I am reaching the end of my tether. Sorry.I know that many of you who will be reading this,will be a whole lot worse than me. I admire you. x

2

Your neuro may be able to tell you what is going on, but she is unlikely to be able to say much about what this means for your future, how quickly or slowly new symptoms may develop etc. MS is very individual and unpredictable.

Questions to ask are: which type of MS does she think you have, is there any medication that may help your symptoms, and is there a neuro physio in your area? Physio may help with your balnce and walking - it has helped me - so is worth trying. You will get best results from a physio who specialises in neurological conditions.

Don’t give up doing things you enjoy but you may have to adapt them. You just need to think about what you can do and how to make the difficult things easier. Be positive - you can still have fun with your grandchildren.

3

Hi Mitzi, yes the m.s nurse has referred me to a neuro physio,so that will be of a help I am sure. I am very positive in general,I think I was just a low ebb when I wrote yesterday and once I started it all came out!!

I will ask the neuro what type I have and hopefully will be put on the right meds

I have a wonderful border collie and she keeps me active as well.I have just come back from a walk with her now.I can’t take her on lead walks,but I drive to lovely places where she can chase the ball and I can walk with the stick.

I will let you know how I get on at neuro,havn’t got the appt yet,but I dont think it will be long after i’ve had the l.p.

Sorry to have been a whingebag x

4

No worries, we all have times when we feel down. We’re here to help in the bad times as well as the good.

I’m glad you’re feeling better today.

5

your’e an angel . thankyou xxxxxxxxxx