I have learned a lot on here. I am on Medicare. I am with Kaiser. I called their medicare (section?) and the nice lady who answered confirmed that yes, Kaiser will send me to a specialist outside Kaiser if I have a need, which means my doctor can refer me to Oregon Health Sciences University Parkinson’s and Movement Disorder Clinic in Portland (40 miles away from me) for ataxia. Oh my gosh, I feel choked up, I feel less alone. They will know exactly what I have. I’m slow, but I have absorbed little bits of information from posts on this site, and it all coalesced today. Thanks everyone.
Living in the UK I have access to the National Health Service. In theory
it might seem a better option🤔 In reality it’s a minefield, there’s no
personal choice given regarding referral to Specialists, waiting lists are
long, there’s every chance of misdiagnosis, which leads to being put on yet
another long waiting list.
Like many others I had to ‘jump through hoops’ and fight for years
to be taken seriously with my symptoms. But, it pays to persevere🙂xB
Sharing info is empowering😊 I hope you don’t wait too long
for an appointment xB
Beryl, I found out from my PCP that he cannot refer me to an outside specialist. First I need to see Neurology. (not referring me to Neurology, just telling me that.) This gets me annoyed and I realize I must keep my cool to help myself. I alienated mental health already by being difficult. I have PTSD too. So I need to remember to be exquisitely polite to get anywhere, even though I might feel exasperated. NHS is something we left-leaning people in the USA can only dream about. It helps to know the reality of it. I have a physical therapy appointment tomorrow to be evaluated for a scooter technically, although I no longer want one. Confusion! Be strong my husband.(and me, oh yeah.)
I’m so happy you’re there, Beryl. I appreciate you.
Kaiser members should be very careful with how they talk to their PCP, I have changed docs a number of times after I noticed how they don’t like to be contradicted, I think the office makes all decisions for PCP. That is why they keep the computer turned away from you.
The problem is I am very naive and just say what I’m thinking. It’s too tiring otherwise.
I quite often speak before putting my brain in gear:roll_eyes:
Thankfully, this happening less and less😉
From my experience, more can be gained from an appointment with a medical professional (Neurologist etc)
if you can keep emotion under control.
With the best will in the world this easier said than done.
Anticipation builds up prior to appointments, even writing points down can be ignored, actually meeting the Neurologist can reduce people to a 'quivering jelly’ I’ve come out of appointments feeling really annoyed with myself
because I let emotion get the better of me and I couldn’t recall what was said😑
It’s so easy to get sidetracked at appointments, a Neurologist may refer to something and the patient may misinterpret the meaning, sending them into a panic and basically a hiding to nothing🙄
As with any formal appointment its’s best to keep to basic facts. Try not to wander from the point, use keywords if possible to make your point, Neurologists tend to be academics and basic terminology has less impact😏
My own yearly review is next week🙄xB
Good advice, Beryl. Thank you.
I’ve found that it is helpful to bring someone with, if thats possible-to take notes and for emotional support. If you don’t understand something it might be easier to tell a relative who can ask for more clarification if you feel intimidated.
I feel confused how to answer everyone here. But I know you’ll understand and I thank you all it turns out I have an appointment with a neurologist 30 miles away end of July. I didn’t know it would be kind of in accessible. Inaccessible my husband will come with me. I am in the battle to just get my disease acknowledged in my record. Also I want to know for my children’s sake. I feel sad. It’s really difficult.
Oreberry, you can just press the reply button under the post or just do what you did…I’m glad your husband is going with you. About getting a diagnosis, did you have an MRI-that usually is one of the first steps in diagnosing CA. I hope your appointment at the Movement Disorders Center goes well. Let me know and bring a list of symptoms and questions/concerns as the whole thing is overwhelming,
I don’t think I will be able to ever get a DNA test. Not with Athena fixing and controlling the prices. Neither will my 24-year-old son to determine whether he should have kids, or my daughter to see if my granddaughter has some horrible more virulent version of it. My stupid HMO doesn’t do ANYTHING to make a patient more comfortable. You were molested by your father and have PTSD and bipolar symptoms…well, good luck. Oh, and the psychiatrist (second one) has left and the wandering psychiatrist is scheduled to come to your city next month. I’m sorry your social worker doesn’t let you get a word in because he’s yapping about his time in Hollywood the whole time, but we’ve run out of anyone else. So good luck with your almost life-long misery. Oh, you have an hereditary neurological disease (4 MRIs) but it’s not on your record because you need a DNA test confirmation, which you can’t get. But just shut up so we can go back to ignoring you.
Oreberry explain to neurologist why you need MRIs in your file and also referral for DNA testing and the reason why. And keep on top of it to make sure it gets done. Good luck.
I will Lin-da. Thank you.