if my own experiences can help...

New diagnosis and before diagnosis
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Good morning all!

I’ve been a member of this site for around 5 years or so. I don’t contribute like I used to, but still read posts and replies. Just reading a few posts on this board has prompted me to add one, in the hope it may help someone.

I’ve had disability issues since I was 45. I am 62 now.

I initially began with walking problems. Up until that time, I was fit and healthy! My left leg felt wooden and heavy…like someone had put my brakes on!

I saw my first neuro privately. He gave me a thorough examination and said this, ‘There is something very wrong with your left leg. There are signs of the same in your right leg. I don’t know what it is, but it won’t get better.’

So of course this news threw me and family into utter terror! I began with a battery of tests over the ensuing years ie MRIs, LPs, emgs, veps and others. I was told my symptoms were typically PPMS. But nothing was ever found wrong on any of the tests. I was diagnosed with 90% PPMS.

My disability progressed rapidly. I was a full time wheelchair user within a few years, hoisted at home and heavily dependent on hubby and carers.

In 2010, neurologist number 13 said I didn’t have MS at all, but something called Hereditary Spastic Paraparesis…HSP!

Well my world was again turned upside down and inside out! More tests were carried out. Certain conditions were ruled out. And still nothing proved what was wrong with me.

Now I am left with diagnosis entitled ISP…Idiopathic Spastic Paraparesis. We don’t know what has caused it, but it could be hereditary. I know of no family members with similar problems.

So my message to anyone struggling to get a diagnosis, who displays MS like symptoms, is to mention HSP to your neuro.

Life with a chronic condition is hard, but I still enjoy life and am here to urge those of you who are at their wits end to hang on in there, accept all help that is offered and never to beat yourself up for being poorly.

Love to you all.

Pollyxx

1 Like
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Thanks for sharing Polly xx

i am off for a muscle biopsy in a couple of weeks to look at Mitochondrial decease. Also being referred to Guys in London to see a professor who looks at connective tissue diseases and also Lupos and Sticky blood syndrome.

it never ends and getting nervous. I am hoping for some sort of working diagnosis by the end of the year. (Hopefully).

have a good day xx

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Good luck hunny. X

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Hello Polly,

What an inspiring message, Iv’e read your posts a few times in the past,i’ve only been writing on here since the end of Dec, you have always encouraged me by your positive and informative messages…Iv’e been ill since the end of 2010 a short time after a major opp it started with weakness heavy legs very bad double vision bad tremors i was in hospital for a week but they decided after tests that it was stress related, i got better but never completely left with extreme tiredness and tremor and weak legs that could still walk but felt terrible. but i believed that id possibly had some sort of a breakdown and just concentrated on getting better but when it happened again after a minor opp i felt sure something was very wrong… this time i couldn’t stand up infact couldn’t even hold a cup or a fork.

to cut a long story short i am tons better but left with severe mobility problems now have to use a wheelchair when going out as the legs just don’t know what to do, its like theyv’e forgotten how to walk, i can walk very short distances inside if i stiffen my legs and really concentrate, but they quickly turn to ragdoll legs or just collapse under me because they forget what to do.

Iv’e struggled to accept a diagnosis of Functional neuorological disorder i’m left feeling fobbed off Stress just doesn’t cut it, they leave me feeling more stressed by the lack of answers. For now i have put down the constant chasing to find out, it was leaving me feeling more depressed, I’m trying to cope best as i can by being positive (not easy) but iv’e just started a bit of voluntary work and iv’e recently got my assistance dog Frazer who is brilliant and helps me such a lot.

Thanks so much for your advice, iv’e started seeing a different GP so will take on board your advice next time i go.

Take care Michelle x

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I’m glad my post has helped a bit. Good luck to all on your journeys.

gave

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Dunno what happened at the end of my last message.

Just meant to say…

Love Pollx