Hi again

New diagnosis and before diagnosis
1

Hi Again

I was on here last year with multiple symptoms of something ( noone can decide ), Thought i would bring people up to date with things , i had a rather distressing appointment with a nurologist completely dismissing me on first app and ruling out everything had mri of spine and neck all clear ,nerve conduction test all clear and bloods all clear . Oct last year woke up with pressure down below and severe lower back pain lost control of my bladder ,got taken to hospital regained some control in A&E but were having (some accidents still ) and reduced anal tone on examination .(sorry guys ),was given an injection of something and another thing for sickness but one needle that stayed in my thigh for both injections(if that makes sense). spent night in hospital had emergency mri in morning , i have a disk bulg at L4 and L5 . was sent home with pain killers and for gp to refer to back people and urology ,

Now have seen urology only to be told its not a problem with my bladder but its my back thats causing the problem and being referred urgently back to nurology i explained to urology consultant about the nurologist and he explained that i shouldnt have been dismissed in that way ,and if they disacharge me and dismiss me again he will refer me to the top hospital in london , but have found out the same nurologist works there too . I feel that i will never get to the bottom of what the problem is .

Feel like giving up .

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I forgot to put that since the injection half of my thich is numb and painful 4 months later .

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Hi, I also had loads of tests which came back normal.

ie 4 MRIs, 2 LPs, 2 EMGs, 1 VEP, plus bloods.

But on physical examination, over a period of 14 years, my clinical presentation worsened quite rapidly. My upper body is fine, but my legs, bladder and bowel are badly affected.

I was first told it could be PPMS, then given a 95% diagnosis of PPMS for 7 years, then that was changed completely to HSP (genetic nerve damage which left me with no mobility). PPMS was brought back into the possibles. Finally, last year, i was diagnosed with ;

Spastic Paraparesis…cause unknown.

It may turn out to be genetic, but we dont know anyone with it.

At least I have never been discharged and was told I will always be monitored annually.

There is no cure, nor treatment.

My advice is to keep all appointments and hang in there. There is obviously something wrong.

Your disc bulge has to have something to do with the problems you are having.

Hope you get an answer soon, as it is hell waiting to find out what`s wrong, I know.

luv Pollx

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Ty for your reply Poll much appreciated

The first time MS was referrred to was when i was referred for a brain scan in my early 20s ,all i got was you haven t got MS when i saw the consultant for results that was the first time MS had even been spoken about i didnt even know what it was or even the symptoms of it . Ive had numerous symptoms for years and have put things down to other things , i have osteoarthritis in knees and toes , i have meniries disease and various problems from hips downwards , so when i suffered numbness ,pins and needles , body jerking , bad circulation ,feet and hands go blue and other things didnt really take much notice , its only when things started to get worse i went back to doc who said she thought it was defiantely a nuro problem if not them will refer to rhumetologist , nuro discharged me and doc isn t interested now , iam fed up of going docs and trying to get to the bottom of things i feel like iam going round in circles .

I have an app this month for a musckolskeleton assesment so will have an up to date assesment for my podiatry problems which i can give to nuro when i see him , and also the urologist in june , urologist says peoblem has got worse since i was admitted as its affecting bladder and bowel now .