HPS & Neurological issues

[Phil82]

Hi

I have just found out that when I was 3 I had Henoch Schonlein Purpura over a few days my legs went stiff and I turned a funny colour but then after some antibiotics made what seemed to have been a full recovery I never had any kidney/digestive issues. We have only just found out what was on my Dr's notes 34 years later as I have been starting to have tests for severe muscle tightness that I have struggled with since my early teens of which noone can seem to explain.

I have just seen a Rheumatoligist and am now currently waiting on EMG tests to see whats happening between my neves and muscle it seems that my nerves are always switched on so the muscles never fully relax and I guess I will end up been refered to a neurolgist as she didn't think it was Rhematolgy related.

My main problems are that I seem to have stiff ankles so it causes me to have a funny walking gait and also over the past few years my hands feel like they have got tighter and I now struggle to write. Writting has always been hard work ever since been a kid because I hold the pen to tight.

Could HPS have got into my central nervous system and is now causing me periphral nerve problems?

I wasn't sure if it was something I just had as a kid and it had now gone or is it something I need to raise with my Dr as a probable cause or even something that is still there dormant in the background. I had blood tests done before my visit to Rheumatolgy one of them been kidney function for autoimmune issues and they all came back fine.

The really odd thing is that I am convinced my 6 year old son has the same muscle tightness/nerve issues as me and if not slightly worse as he is showing more muscle issues now than I did at his age.

Any advice on a HPS/nero link would be much apprecaited.

[twinpower14760]

Hi

I was diagnosed with HSP in 2018 and I have burning feet, burning skin on the thighs and calves. My left thigh also becomes numb and aches like a tooth ache. I too have complained about tight feeling calves and the tendons behind my knees and behind my thighs feeling very tight and I too, also feel sore muscles (like I have done 50 squats) tight and sore when just walking a few feet. I am scheduled to see a neurologist now in July. I will let you know what I find out.

Take care

Nanette

[Suzym2u Moderator Vasculitis UK]

There are various medical conditions that could explain your current symptoms. Whereabouts do you live as this might influence the advise we can give. I think you need to see a doctor who has a very broad understanding of medical conditions rather than going to see a particular specialist in a narrow field, such as a neurologist. If you would like to contact John Mills from Vasculitis UK he will help further if he can. [e-mail]