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.