I'm waiting on tests but has anyone else dealing with this?

roxieb88

Where to start... Well for years my legs from my hips to my toes have just ached constantly nothing helps n it doesnt matter if i stay in bed all day or go about my daily routine, they always hurt n ache, there ice cold too my toes are blue /purple all the time! (As i call them dead mans toes) so it hard to sleep with it but I just carried on, u know.

But over the last 2 years, my hips have started seizing up and my movement is really restricted and one more than the other, it feels like there is so much pressure in them (if u understand that) n if i continue to walk i get this horrendous pain n i physically cant move cuz the pains that bad and need to cling on to something asap! That's the point where I have about 5% movement in it, like when u walk u raise it knee but I can't do that, i just have to try n walk straight legged to the nearest seat. I have to try n put all my weight on my other leg which is causing me alot of pain in my lower back now. Plus i cant move when i get home, i just lay on my bed for the next 2 days cuz it's so painful to move. Well anyway i dnt go out anymore, I stay in for months on end as I also live up three flights of stairs n no lift so by the time I get down them my hips already hurting and getting up them is absolute agony, I just shout my way up the stairs n use my other leg to step n then pull myself up by the rails or my partner will help me.

Be nice to know if anyone else has experienced this cuz I'm currently waiting for an mri as they couldnt see anything on my xray. But my mother started having problems with her hips around my age but I don't know what she was diagnosed with as she died when I was 17 n I just never asked it was just mums got bad hips but she could barely walk by time see died. So I'm worried. Be nice to know if anyone has experienced this?

poppy123456

Hi,

I'm afraid we are not medically qualified to answer this for you, as everyone is affected differently by these conditions it could be many different things that's causing this.

Hopefully you won't be waiting too long for the MRI and once the results are back from that hopefully they will have some answers for you.

In the meantime i'd advise you to speak to your GP, maybe they can do something to help while you wait for the MRI. Good luck.

pollyanna1052

Hi, I am wondering if there could be 2 possibilities...both of which I have been wrongly diagnosed with.
1. Multiple Sclerosis.....this can be difficult to diagnose. MRI and Lumber puncture are often used
2. HSP..hereditary spastic paraparesis....with your mum having similar problems..it`s a possibility.

I began with foot drop and had to swing my leg out from the hip.
I have no mobility at all now.

Dont wish to scare you with this. 

Chloe_Scope

Hi @roxieb88 and a very warm welcome to the community. Thank you for sharing this with us and I am sorry to hear you are experiencing so much pain. I imagine this can be frightening and has caused you to become isolated. 

Like Poppy said, unfortunately none of us are qualified to give medical advice. However, I hope the community can support you in understanding and many members who would have experienced similar things.

I really hope your MRI goes well and please do keep us updated.  

roxieb88

@pollyanna1052 thanku, no it doesnt scare me cuz i can just ask the doctor maybe it could be this n that so hopefully he can look into it n send me to get more test done because, tbh I just want them to find out what it is, so they can either fix it or just help me cope with it if it's for life. But currently waiting on a mri scan for 2 months! its taking a very long time. I ask him everytime i go n he just says ill get a letter. So i guess I'll just have to wait. But I'll update when i know more, it a very nice community here. glad i stumbled upon u all. Xx

roxieb88

@Chloe_Scope Thankyou!

Its just nice to know I'm not on my own and that maybe others are having the same issue. I hope so too! xx

Chloe_Scope

That is no problem at all @roxieb88! You most certain are not alone and we are always here to chat, be supportive and share advice. I'm glad you found us too.

pollyanna1052

roxieb88 said:

@pollyanna1052 thanku, no it doesnt scare me cuz i can just ask the doctor maybe it could be this n that so hopefully he can look into it n send me to get more test done because, tbh I just want them to find out what it is, so they can either fix it or just help me cope with it if it's for life. But currently waiting on a mri scan for 2 months! its taking a very long time. I ask him everytime i go n he just says ill get a letter. So i guess I'll just have to wait. But I'll update when i know more, it a very nice community here. glad i stumbled upon u all. Xx

Hello again.
Glad I didnt scare you hun.
I`m seeing a new neuro in November. Maybe I`ll get a diagnosis. Yep, waiting for tests is the pits. Take care chick xxx

April2018mom

pollyanna1052 said:

roxieb88 said:

@pollyanna1052 thanku, no it doesnt scare me cuz i can just ask the doctor maybe it could be this n that so hopefully he can look into it n send me to get more test done because, tbh I just want them to find out what it is, so they can either fix it or just help me cope with it if it's for life. But currently waiting on a mri scan for 2 months! its taking a very long time. I ask him everytime i go n he just says ill get a letter. So i guess I'll just have to wait. But I'll update when i know more, it a very nice community here. glad i stumbled upon u all. Xx

Hello again.
Glad I didnt scare you hun.
I`m seeing a new neuro in November. Maybe I`ll get a diagnosis. Yep, waiting for tests is the pits. Take care chick xxx

Good luck @roxieb88! I agree. I have often felt impatience and frustration waiting for results of my son’s evaluations and tests to come back.