Hi all, I have been on & off this site for the past two years whilst under investigation for probable MS - Primary progressive. I was referred to John Radcliffe who did a lot of tests, MRI’s & Genetic Testing…this has come back as a positive for HSP - Spg9. Now Awaiting to see genetics team - Neuro at Oxford feels it could be the Complex version as I have so much neurological stuff going on and all my symptoms so close to PPMS -they still want to keep an eye on this. I think it is Boudica who has been diagnosed as HSP, any advice would be great Struggling with the extreme fatigue, pain & bowels…to mention a few!! This has been a great site to visit & chat to people will similar symptoms and experiences. Kx
Hi Angeleyes, well I am sorry to hear your diagnosis but on other hand I’m sure to some degree it’s good to know exactly what’s causing all the symptoms.
Yes Boudica (Poll) has same diagnosis, and she also first of all had dx for PPMS, but she kept getting negative lumbar puncture results.
She’s not on the forum all the time… if you can find a post of hers and private message her I’m sure she’ll be happy to share her experience. Poll is always so helpful and supportive.
As with Poll, I hope you will continue to use the forum!!! Many of the symptoms are so similar and drugs for symptom relief are the same, so you should still get a lot out of coming on here… plus we would hate to lose you!
Take care and all the best,
Thanks Pat, Being limboland for over 2 years was hard & finally it was a huge relief to get a diagnosis, not all in my head as I feel some people thought!! - doesn’t change what’s going on with my body - just have a name for it. Yes, I’m on a lot of the same drugs used in MS, they now want to increase my Gabapentin & Bacolfen drastically!!! I’m still working full time, so I’ll do it over Xmas as it knocks me for six at first! I hate taking so many different meds! Hard day - so about to crash out… Thanks Kx
Thankyou Pat, for pointing Angeleyes in my direction.
We have pm
d each other and Ill support her as best I can. Poor lass, like me all over the place with different diagnoses.
Hi, I’m fine thanks - just getting my head round it & there seems to little information available about HSP. Just finished a hard day at work - seem to be struggling more at work…fatigue & brain fog!! Hope you’re well Kx
Not bad thanks Poll… well you know… finding all the xmas stuff a struggle if truth be told. Got a big family do on Sunday and meant to be going to Wetherspoons tomorrow lunchtime with my sheltered scheme… not sure if I’ll be up to it.
BUT what has made my day is your wonderful news in other post. Brought a tear to my eye.
Take care Poll…
I am the president of The Spastic Paraplegia Foundation, sp-foundation.org. Our mission is to find a cure for Hereditary Spastic Paraplegia. That sounds grandiose & almost trite because all rare disease non-profit foundations are working to find a cure for their cause but our foundation is doing wonderful things and incredible progress is taking place with research on this condition. My point in responding to your message is to both say I’m sorry for your problem but also to let you know that there is a community of people and an organization that is working to help you and that welcomes you to our community. We have “ambassadors” in each state of The US who organize and coordinate fellowship quarterly so you can meet people with this condition and the more you learn, the less frightening this can be. Our Annual Conference will be in Seattle in June. Information about it is on our web site. I hope you will send me an email with your address so we can make sure to keep you informed and connected so that together we can cross the finish line to a cure.
TOGETHER WE CAN MAKE A DIFFERENCE!
SPASTIC PARAPLEGIA FOUNDATION
Spastic Paraplegia Foundation
[Email address edited]
There’s a nice day out for you in June Poll, a change of scenery will do you the world of good
Good thinking Jan, go for it Poll.
Busy at work but so glad that my post prompted a response that might somebody else in a similar situation. I have always found Poll’s posts Interesting. I will be on later as I will respond to the HSP org message & all other messages. They’re going to send me info - happy to share this with you Poll, or maybe you could message him yourself. Not having a good day - so I’m glad it’s Friday…full time work is no longer agreeing with me & my body. Speak soon Karen