Still waiting for a diagnosis


#1
Hi. My name is Michelle. I have been under a neurologist since October. Last week, he said that he wasn't happy about my right arm swing and right side. He has scheduled a battery of tests. I have had joint pain and stiffness for years but thought it was arthritis setting in. In October, I had massive numbness and tingling and then my arms and legs became so stiff that I couldn't lift my arms or walk far. I drove myself to a and e and they tested for ms and a brain tumor and then discharged me and mentioned m e. Glad I am seeing the neuro in Leeds as he seems a good guy. I have a four year old and we were just about to adopt and I am grieving the loss of the person I was and the child I have lost. The neuro said it would be atypical of parkinsons and this has scared the living daylights out of me as worried about pdplus now. I dont have a tremor. I am very stiff, have sleep problems in that as I go into rem sleep, I snap my jaw and bite my tongue. I sometimes seem to suddenly stiffen and it affects my chest muscles. I wake in the morning feeling awful, poisoned, stiff and dizzy. It takes until about 3pm to start feeling normalish. I dont drive more than 7 miles because I get trunk weakness and am hunched over and diaphragm spasms. I cant walk far, I mile on a good day. I cant lift my son now. Many of my symptoms seem like parkinsons. I find it hard to turn in bed and I am extremely fatigued. I still have a sense of smell though and in Feb and march, I was better than I m now. Can barely function. Often just need to be in bed. Does this sound like parkinsons to any of you? I was a high school teacher but gave up a job I loved two years ago, as I found it too hard. I put it down to baby brain after being in intensive care after having my son. Now I am beginning to wonder if all of this started long ago and that in October, it first began to interfere massively with my life. I was always high achieving and go go. I miss the old me. Sorry it is a long one. Can anyone relate? Do you feel really awful suddenly when you have parkinsons? I saw an immunologist and he said no to m.e. =( I have enjoyed looking at other posts on here. You realise you are not alone.

#2
Hi minxish
 
Welcome to the forum - and I'm sorry to hear that things are tough. If you'd like to talk any of this through with somebody, our helpline nurses are on the other end of the phone. Our helpline number is 0808 800 0303 (it's free from UK landlines and many mobile networks - see www.parkinsons.org.uk/helpline for more info).
 
Do other forum members have experiences they'd like to share with minxish? 
 
Thanks
 
Sharon

#3

Hi, 

This does sound to me like PD my advice to you is go through the tests and let them do a MRI. My nuro is based in Sheffield, Proff Sharrack you could ask for a new referral to him I found him to be very straight & he told me within 10 minutes of our consultation he suspected PD all in all I was officially diagnosed within 5 months. He may well offer you some meds my advice is say yes then if they work you have your answer the drug he gave me was Pramipexole 0.088mg 3 times per day & it is designed to only work on PD & restless leg syndrome. I hope this helps & you get your answer soon I will be keeping a eye on this post to see how your doing. And I also agree ring the help line they are a great bunch of people and I have had the pleasure of even meeting some of them.

 

Best wishes & keep fighting.

 

BB.