A Neurological Mess

[kattsqueen]

is this something like muscular dystrophy? could you get a referral to a muscular dystrophy clinic and have them evaluate you?

 

katts

[FeatherMe]

I read about paroxysmal non-kinesthetic dystonia in the Dystonia Foundation Magazine. A man in MI wrote a pamphlet but no one knew how to get in touch with him. I have been wanting to call the movement disorder doc and ask if there is a support group for PNKD. My thought is he has never seen anyone with this.

My doc that I thought would champion my cause - not too sure anymore. I saw his PA. She stroked my leg that set off a major event - that had never happened to me before as no one has ever stroked my leg the way she did. She called the doctor in, but it was my doctor's brother, and as soon as he saw me he said it was somatization disorder. Then they cancelled the appointment I made for my foot with the PA because I was ten minutes late due to an accident and gave me one late in October with my doctor. I wrote to my friend, a DO, and I think he talked my doctor into seeing me - I have an appt. this Thursday.

I go to Boston soon. I looked up the doctor I am seeing and he graduated from the local med school - I hope he graduated before any of my doctors were practicing. I think that is probably so and I hope he has no connections left here. He can't tell me my foot is all in my head!

I am tired of pain but I keep doing stuff. I crash about every two or three days out of exhaustion but at least I have accomplished somethings that can't be done by sitting in a chair.

[Samantha]

Best of luck on Thursday  fingers and toes crossed for you
 
Sammy

[FeatherMe]

We put on the table the demyelinating stuff as my brain MRI remains stable. He still insists I have prediabetes despite a blood test my PCP had done showing otherwise and feels that's the cause of the small fiber neuropathy. He's not doing anything about my foot and doesn't believe anything the podiatrist said. He said to let New England take care of it. I asked about something for pain because as it gets colder, my pain increases. He's going to put me on keppra. I really want it to work.

As far as the movement disorder goes he was going to have them check out Stiffman's Syndrome. I told him I had been to NIH and scolded by the head hancho basically because my doctor sent no records and he didn't feel I had it. I then spasmed when he tested my arms. It went right down my right side. They needed the room. I told them if they could get a wheelchair they could get me to the waiting room. He had to transfer me from the chair to the wheelchair and, as the last time with his brother, from the waist down was heavy and useless. I couldn't help him at all. He decided I needed to get into the movement disorder place sooner than the end of February. I don't even want to go. It took about an hour before I could drive home. My foot cleared up before my hand did.


Next Thursday I go to Boston and I do hope they can fix this foot. I am tired of the pain and not being able to walk barefoot! The simple things in life. 

[Samantha]

So true Feather "The Simple Things in Life" are so hard for us to manage some days 
We must remain positive that one day all will be revealed and life gets better


 
Sammy