Waiting to see Neuro undiagnosed


#1

Hi All

Not sure im in the right place but was hoping for a bit of advice.

I am 37 and have had a tremor since 21 which has slowly got worse alongside this I had what i thought was restless legs. I went to my gp as the rubbing together of my feet at night has progrerssed to bigger movements and its stopping me sleeping.  I also have raynauds and suffer with hand and feet cramping daily.

I really thought my gp would agree it was simple restless legs but said he was going to refer me as he thought it was a movement disorder,  I apparently have rigidity in my arms.  I asked if he thought it was pd but he said no. Id be interested in your thoughts as if not pd wondering if anyone knows what else it could be?

Ir would be great to hear also what to expect at the appointment

 

thanks so much in advance

Kitty77

 


#2

Hi Kitty77,

I am afraid your symptoms do sound familiar to me mine started as hip pain and stiffness then the tremor started swiftly followed by RLS and my eye site getting weaker. I was referred on the fast track to my neuro and within 10 minutes I was told I believe we are looking at PD. The only thing is I already pretty much knew this Website is full of the correct information as it's checked by a neuro.

To guide you through your consultation you will be observed by the neuro asked to do some hand and possibly foot movements walk in front of him/her and they will probably do a MRI or CT scan or if they have the best scanner going a Dat scan this is the only one that can see PD the other two just rule out other conditions, PWP are generally dx by their symptoms the scans are a back up. If I am right don't think it's all doom and gloom we need to stay positive and fight otherwise it win's I call mine the B**** it's what helps me focus and fight. Let me know how you get on.

 

Kindest Regards BB.


#3

Thanks BB

Its seems like an eternity just waiting to see someone everyone around me is kind of dismissing me and telling me not to worry which is easier said than done.  Ive had a lot of the symptoms for so long i just thought it was normal for me if that makes any sense but things are starting to worsen so we will see what is said.  Either way some sort of answer woud be good im more worried aout them not having a clue whats wrong than anything else.

l'll let you know how i do

 

thanks again K

 


#4

You are welcome my love and I know how you feel about being dismissed I have been there to. If it is the b**** you will more than likely go through a type of grieving process pre PD and post PD BUT I PROMISE I WILL BE THERE FOR YOU just think of me as your guide take care. 

BB x


#5

Thanks xx