Strange symptoms

[Suzywhizzo]

Hi All, 

I am quite new to this site and currently trying to get a diagnosis of my condition,  Doctors  think  Behcets Disease. 

I would just like to ask a couple of questions, due to some of the strange symptoms I have been having.  

Has anyone experienced numbness in their hips after sleeping for sometime.  I toss and turn most nights as my joints are so painful and when I wake up, my hips are completely numb, to the degree where I could pinch myself and not feel them.

Also another weird feeling is, I hear a real rushing of blood in my head where it sounds like a pounding noise and for a split second the noise stops, then it starts up again.  This noise keeps me awake for ages and I have no idea what is going on.

If anyone can throw any light on any of these, please let me know,  as I would really appreciate it.  I'm struggling to get help with my condition and I think the stress adds to whatever is going on.

Thanks

Suzy

[Hidden]

Hi Suzy, 

The pounding noise could be pulsatile tinnitus. How long does the numbness in the hips last in the morning? 

[Suzywhizzo in reply to Hidden]

Hi Keyes, once I start walking around the numbness starts to ease, but during the night it is there most of the time. 

[AndrewT in reply to Suzywhizzo]

Dear Suzy,

This COULD simply be that, as you sleep, you are putting pressure on your ear.  This might sound 'stupid' but it can happen.  That said please DO get this checked out further-I'm no expert.

Hope all goes well, best wishes

AndrewT

[Suzywhizzo in reply to AndrewT]

Hi Andrew, thank you for your reply, I appreciate it. Suzy

[Ayesha1]

Hi Suzy, my name is Ayesha. I get the whooshing sound in my ears too and it's accompanied by high pitch buzzing sound and has been explained to me as tinitis which apparently is common in some forms of vasculitis. It's quite disconcerting but Ive had it for 8 years so have sort of got used to it. I don't get numb hips but do get numbness in my feet and sometimes hand due to periphery neuropathy. My diagnosis changes a lot, I'm back to undifferentiated connective tissue disease but Betchets was mentioned to me over the past couple of years. Hope you are doing ok. Autoimmune diseases are the pits.

Ayesha 🌷

[Suzywhizzo in reply to Ayesha1]

Hi Ayesha, thank you for your reply, it helps when people explain their symptoms, as you feel alone when all this is so new. I wish you well. Suzy

[azeyes]

Hi Suzy 

Numbness in the hips is not something I have had yet. However it seems to target several strange areas . I have had numbness in my arms shoulders neck knee s. Have also had whooshing pulsating sounds in my ears. High dose prednisone makes it stop for me. Best pf luck 

[charro]

What sort of rashes do you get? I immediately thought 'pulsatile tinnitus' which I get during my Erythema Nodosum flares. I get terrible pain and crepitus in the joints plus the rare lumps and bruises which are confirmed as Erythema Nodosum. I also get mouth ulcers and nose sores which bleed ++ The doctors say it can't be Bechets as CRP and ANA are normal. I will be interested to know what skin symptoms you get. Hope you feel better very soon. x Clare

[Suzywhizzo in reply to charro]

Hi Clare, thank you for your reply. I don't get skin rashes, but I do get bruises over my legs mainly, but sometimes my arms. They just appear and they are like a yellow colour. I don't tend to get painful mouth ulcers, but I do get red blood spots in my mouth, on the sides of my cheeks. It's like burst blood vessels. They are only there a day or two, then they go. My joints always hurt, but I take krill oil which seems to help. All very bizarre.

Thanks Suzy

[Suzywhizzo in reply to charro]

Sorry what is the ANA test?

suzy

[Hidden in reply to charro]

Hi Clare, your Dr's don't know much about Behcets as ANA isn't associated with it ( although it's positive in some people ) and lots of patients with Behcets have normal CRP. Where are you seen? 

( ANA is anti nuclear antibody and is associated with Lupus another auto immune disease ). 

[charro in reply to Hidden]

I live in Somerset on the Sherborne/ Yeovil end.Thanks for that.

[Hidden in reply to charro]

Have you asked for a referral to one of the Behcets Centres of Excellence? ( Liverpool, Birmingham and London ). They are nationally funded and don't cost your GP anything for a referral. I will post the link. 

[Hidden in reply to Hidden]

The link to the C of E's is down at the moment. If you want to phone or e mail the VUK helpline I will try to help. Certainly with your symptoms Behcets should be a rule out. 

vasculitis.org.uk/helpline

[Suzywhizzo in reply to Hidden]

Hi, thank you for this, I will get this checked.

suzy