Anyone with Hereditary Spastic Paraplegia?
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That’s the thing kimdyer18 there are so many genes involved in different types of hip.All we know is that when it started to affect our arms and hands we had a complicated form ?
there is a link between h.sp and cmt
do you know anyone else with hsp? -
nope don't know anyone else I get loads of spasms now
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Well you know me now ???. Oh yeah I’m familiar with the spasms they are a pain literally ?. I have sharp shooting type pain too that goes straight to my toes ??
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yeh im the same
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It can be quite annoying. So were you diagnosed recently?
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August 2018
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So a couple of years ago. Well if you want to talk about it, I’m here
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thanks hunni will im finding hard atm my daughter goes to school this week xx
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Hi @kimdyer18! I just wanted to direct you towards this post we recently made that outlines some ideas from Scope's Activities for All team on making the back-to-school transition a little easier this year. It's something that a lot of children and parents are feeling anxious about, so please don't hesitate to reach out
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@kimdyer18. You are not alone my love, my sister who also has H.S.P has a 5 year old who is going back to school on Monday. She is a little nervous also. We live in unprecedented times. Thinking of you ?
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thanks hun x
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hi i have hsp and been diagnosed and treated in london at the royal college hospital it nhs and very good iv been taking gabapentine for about 6 years now and it seems to help the spasticity im 59 and was 42 when i started to get symptoms any one need any info feel free to contact me
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Well my husband has finally been told which rogue gene is causing his HSP and it is SPG21. It is one of the rare ones and so far we haven’t heard from anyone else with the same one. It still hasn’t meant any treatment though.
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I'm glad they were able to figure out which gene was causing the issue @Rebecca_de_Winter, hopefully there will be the possibility of treatment going forward, it's a shame that nothing is available at this time.
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Hi-
I've had increasing leg/arm and (overwhelmingly) back pain for 20 or so years. Also punishing fatigue, intolerance of heat etc-essentially all the neuro goodies. Various MRI's have shown considerable Cerebellar atrophy, again getting progressively worse. I was misdiagnosed with ME/CFS in 2015, having been (finally) referred back to a Consultant I saw a fabulous Neurologist last week who is "95%" certain I have Complex Heriditary Spastic Paraplegia (Type 7). I also have optic neuropathy, hearing loss, bladder issues-all the goodies I now understand can be associated with this condition. I am awaiting the results of a genetic test to confirm but it is almost a certainty (especially as my Father has many of the same symptoms and has again been repeatedly misdiagnosed).
So...
I am presently working and exercising as much as possible but it's getting more difficult. I'm new to this so really interested to hear about peoples experiences with the condition, and insights would be much appreciated.
All the best, Dan
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Hi. I’m waiting on brain scan results. Suspected complex paraparesis. It’s progressing rather quickly now. Affecting my eyes. Quite alarming. 🙈
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Mine is sporadic🙈
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Hi @wol139. This sounds really difficult for you. Is there anything that might help whilst you wait for the brain scan results? Please don't hesitate to let us know if there's anything we can do to support youCommunity Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her.
Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only. -
Hi @TheKernel74. Thank you for reaching out to us. Misdiagnosis is never pleasant and is always frustrating.
I am really glad to hear you have, at least, been referred back to a consultant, especially as you saw a fabulous neurologist last week who has potentially provided you with an alternative response.
I am wishing you the best of luck with the genetic test. How are you feeling about this at the moment and would anything support you?
Unfortunately, I do not have experiences and insights I can share with you. Hopefully, our wonderful community members will though.
I am here to listen, nonetheless! Please don't hesitate to let us know if anything else would help, even if that is just listeningCommunity Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her.
Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
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