hello my husband has been under the Neurologist , had CT scan , DAT scan , bloods taken , eyes tested (at hospital), ect, the Neurologist wanted the DAT scan to rule out PD, but all his symptons seem to be with PD . he has tremor mainly in his left hand but sometimes both hands , his left arm does not swing when walking , he sometimes has trouble with his speech, he is drooling , trouble swallowing , and started to drag his one foot and limping he cannot walk far any more he gets drained of energy quickly he has started to suffer with restless leg in the evening , he seems to be stopping , his left eye has started to twitch, his hand writing has shrunk , i have noticed his face looks like it is dropping ( the sad face look ) and a few more other things … he has not had MRI due to him being claustrophobic . and now he has recieved a letter today saying DAT scan is normal so PD is unlikely , Where do we go from here ??
Hello Simom, and welcome to our community forum.
We are sorry to hear your husband has been facing these challenges of late. One of the difficulties with diagnosing Parkinson’s is it shares symptoms in common with multiple other conditions. While it is ultimately up to your medical team to diagnose your specific needs, it is always a good idea to get a second opinion. If you need help locating medical care in your area, please reach out to our helpline on 0808 800 0303, and one of our advisors will be happy to provide assistance.
With our best wishes,
Jason
Form Moderator
A couple of suggestions:
A private consultation with a neurologist is about ÂŁ150.
Enquire about neuro physiotherapy. On the NHS your gp may be able to refer you to the physio even without a PD diagnosis.
Good afternoon Simom … From what you say the Neurologist “wanted a Datscan to rule out Parkinson’s disease”. With me my Neurologist wanted a Datscan to confirm my Parkinson’s disease diagnosis. From your comment I assume that your Neurologist thinks it is not Parkinson’s.
A Brain Mri scan is important to rule out other possible causes for your husband’s symptoms.
So “Where do we go from here ?” should be brain scan as I suggest. Talk to your medical advisers about overcoming your husband’s claustrophobic fears.
A normal Datscan does not mean that your husband does not have Parkinson’s, but it is probably the best test. The Datscan confirms that there is the requisite amount of Dopamine in the brain.
Your Neurologist may treat the symptoms with a Parkinson’s drug called Madopar [or other Parkinson’s drugs] to see if it helps.
If he has Parkinson’s the Parkinson’s drugs will help. This is the only way to confirm Parkinson’s accurately.
Best of luck
Steve2
hi steve2 i have had mri under sudation and cat scan eyes tested as well. the neurologist says in a letter Parkinson’s is unlikely. clinically there was some atypical features what ever that means ??.my next appointment with them is in 3 months and that’s over the phone
Hello Simom … I also have Atypical Parkinsons.
I take Sinemet [aka Co-careldopa]. 3 x 2 pills a day & I find it helps. Tried two other
Parkinson’s drugs that didn’t.
Steve2
Hi Simon, how’s it going?
Just read your post…a long time to wait with no answers.
Hopefully your phone consultation in July will provide some insight.
In a similiar boat…
i saw my neurologists and because the dat scan clear and the tremor dos not look like what he sees for parkingsons so he has diagnosed me with fnd functional neurological disorder. but my gp has advised me to go and get a second opinion and pay privet
Oh ok…
That’s what I was diagnosed with…but had some relief from Parkinsons medication, so i’ve pushed for a second opinion.
Sadly, been waiting since Jan and have had two cancellations since. It’s so frustrating knowing something isn’t right and getting no answers.
Sorry Simon. Hopefully it you can afford it, going private will be a positive step.
Thanks for the suggestions!
My husband was exactly the same all tests done and all potentially normal. Then he has an appointment with a respiratory consultant ( for another condition ) who noticed lack of facial movement. He wrote to our gp and I got worried. I called a variety of clinics doctors secretaries until I found someone willing to help… it turns out that my husband doesn’t have classic Parkinson’s. He has “red flags which suggests an Atypical Parkinsonism” to which we were told are four. Two of which do not show up on scans and only confirmed during a post mortem after death. He is now being treated as having this. With a young family we are both in shock. But greatful to the respiratory consultant for his vigilant productive approach