Good luck Andy and I hope you get some answers soon so you know what you’re dealing with.
Jayne
Hi Andy
Sorry to hear about your ongoing difficulties getting a diagnosis. My understanding is that DaTSCANs are about 90% reliable as a test for PD in its early stages, so that still leaves the 10%…
Given that PD progresses very slowly maybe you can keep an eye on things and go back to your GP if new symptoms appear? Certainly it is worth persevering to get the correct diagnisis, as obviously you can then get treatment that will help.
Good luck!
Thank you for your kind replies, it’s a real help to be able to talk to people who understand.
Andy
Hi Andy .Feeling you’re stress it seems were all in the same boat .Hope you get some answers soon …Tommy
Hello, I’m afraid that I may straddle two camps; I was diagnosed with early onset Alzheimer’s and shortly afterwards developed a Parkinsonian tremor in my right hand. This appears to be spreading to my legs. I have the rigor in that arm and general aching joints but the DAT scan was normal and I have
no real Bradykinesia. A second opinion downgraded the Alzheimer’s to mild cognitive impairment so I came off the Donepezil drug and the tremor became less pronounced. The tremor cannot be treated because I’m DAT normal and thus can’t be diagnosed with PD. This all has to be good news in the short term but has anyone got any good ideas how to lessen or eliminate the tremor with alternative therapies?
Hi Andy, We are in the US but I have been searching everywhere I can to figure out what is wrong with my husband. I see it has been a year since your last post on the subject. I am hoping you have figured out what is going on. My husband too was diagnosed 5 years ago. I wasn’t aware of the datscan until 3 weeks ago from searching. I always had doubts since his carb levadopa never had any effect on him. I insisted on the datscan with the doc. He was so convinced it was parkinsons so he set it up. His datscan is normal. So he has been taking this medicine for 5 years with no need. Now the doc came back and said the symptoms might be due to a mini stroke years ago. His response to us was No Parkinsons which is good. Stop taking the meds and exercise. If you get worse, call back and set up an appointment. Needless to say I am trying to find another Neurologist. I hope you can give me so good news about yourself.
Hi, thanks for your message. That must be so frustrating for you both. I’m currently still in limbo after having numerous tests. I’m currently taking amitriptyline for the symptoms which appears to be working but making me feel more tired. My gp is referring me to a different neuro for second opinion as my current one is disinterested.
My gp thinks that eventually something will show up and the everything will fall into place. Fingers crossed for that. Take care. Andy
Jim’s neurologist put him on an anti depressant a few years back. It made him feel very sluggish and tired. It lasted for about 1 month. We both felt it was doing the wrong thing for him. I try to keep him moving the best I can without being the B word. (Smile) Sleep and exercise seems to be the best medicine, but as you know it is hard when you don’t feel well. We go to parks for picnics 3 or 4 times a week when it is nice, but in the winter it makes it a little more difficult to get out and do things. I do have an appointment for him with a new neurologist on April 3 at Duke University. It is Durham, NC. They are suppose to be one of the best groups in the State. It is only 2 hr. from us. Until them I am working on supplements (brain and body connection) and some simple walking exercises to help to strengthen the leg muscles. I will keep you informed. Thks for the info.
My gp tried me on gabapentin first for the pain in my legs but that wasn’t helping so we’re trying the amitriptyline. I’m still struggling with the pain in bed and also when I’m in the car for long periods. We have 5 dogs that need walking so getting exercise isn’t a problem but my walking is getting slower and my legs always feel stiff and sore. It’s frustrating to have had these problems for so lo
ng and still not know the cause. Andy
Hi Andy,
Keep strong, it’s difficult, but sadly have to just keep fighting.
Know all the struggles you are raising and took almost 3 years for me to get help from NHS after all the consultations and trial drugs etc.
Keep a record and take a reliable witness with you in all the consultations. My fiance was the best and she told all the Neoro’s off when I sat quiet, whilst she told them word for word. (she was even outside when this was discussed and had no way of knowing!)
When it gets bad, just message me and am always happy to chat as aware the feeling of solitude in all this can be the worst enemy.
Best,
Jim
Thanks Jim, limbo land is a terrible place to be. I have been referred to the multiple sclerosis clinic at York hospital for a second opinion. I have seen my current neurologist only twice in over 2 years. The second time he didn’t even examine me. I know these things are difficult to diagnose but I do feel as though I have been disregarded because all of the tests I’ve had have not shown anything. I’ve read that in the early stages of some neurological conditions the scans don’t
always show anything, so what happens then? Does anyone have any experience with the specialists at York because I just don’t know
what to expect? Thanks for any replies. Andy
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Dear Andy, I don’t know about York but my experience of Neurologists in London and Bucks is that they are rarer than a Dodo unless you pay and the treatments differ enormously. For example, one organised a DATscan (normal) while the other prescribed Sinemet for the symptoms (rigidity and tremor), which did not work. One said no PD and the other didn’t comment. Then both suggested waiting for 6 months which coincided with their waiting list to see if further symptoms develop. The drugs that address tremor prominent PD have some awful and potentially dangerous side effects, so its just a case of turning Limboland into La La land. I find HIT training does me the most good and is enjoyable. I’ve tried various prescription and herbal treatments without success. Good luck with York and finding your La La Land
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Hi Andy
Hope you now have a diagnosis, and feeling much better? As it is a long time since you last posted.
Flossy