Best of luck JD … I hope she’s a very knowledgeable “super hot” lady of an ideal age.
Mines a 60 year old bald bloke with a beard & tattoos. Wouldn’t swap though as he really does know his stuff.
Do let us know how it goes.
Best wishes
Steve2
Just a thought. You might want to consider claiming Personal Independence Payment. It is based on the effects of your condition and is not income related.
Thanks Douglas, do you need a Parkinson’s diagnoses before you can apply for PIP? Or does Parkinsonism count too?
The assessment is based on your symptoms - the effects of your current condition - so a diagnosis of Parkinsonism is not a problem.
Thanks everyone for your help.
I’ve had a letter back from neurologist today saying no abnormality found in MRI scan. But there is nothing about follow up DAT scan. I had a physical exam and was told I had symptoms of Parkinsonism but not sure how to move this forward? Does anyone know what an mri rules out?
Plus do I have to tell dvla now or do I need to wait until diagnosed?
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Morning JD … A normal mri brain scan is excellent news. My neurologist told me that a normal brain scan ruled out other “nasties”. He told me he expected my mri brain scan to be normal.
You probably have to ask for a datscan to get one. Not too much point in having a datscan as if it were positive or negative you would still be put on the same Parkinson’s medication. But a positive datscan for me helped me believe I had Parkinson’s.
You will probably get a letter from your neurologist, like I did saying … “I reviewed Steve2 in my neurology clinic as a follow up. His symptoms remain unchanged, difficulty initiating walking, freezing episodes. He had a datscan which was suggestive of a Parkinsonian syndrome. He had MRI of his head which is reported as normal for his age. Steve2 has atypical Parkinson’s likely caused by parkinson’s plus syndrome. At present his condition is mild & does not affect his abilities to drive.”
I don’t think I ever saw him again other than a diagnosis for neuropathy, he also arranged [quite unpleasant electrode] tests in Brighton that proved this diagnosis.
Were you pleased with the consultation JD ?
I expect you will just carry on with taking the medication with reviews from your Parkinson’s nurse every 6 or 12 or 18 months.
Once you are told you have Parkinson’s you need to tell the DVLA. Maybe wait for the letter.
Best wishes
Steve2
A Brain MRI scan might show up something like a Brain Tumor.
Best wishes
Steve2
They might now consider whether you have Parkinson’s Disease like myself or one of the Parkinson’s Plus Syndromes like Steve
The treatment for both is initially the same and likely with a drug including levodopa.
Cheers Douglas … I should not have opened the link. In some cases ignorance is the best option.
My neurologist did say that what I had was the worst option as it is so difficult to treat & does not respond to medication.
Steve2
Sorry if you have read things you would rather not. I am always of the opinion that it is better to know than not to know. It is, I feel, important because it is all too easy to confuse PD with atypical Parkinsonism.
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I was sort of joking. But perhaps best not to know.
Steve2
It was a good first meeting with the PD nurse probably asked far too many questions.
Was told to give meds a bit more time to settle as only been 4 weeks. Was told need to take meds on empty stomach apparently even milk is not advised as protein impacts meds.
Booked next appointment.
Evening JD … I think it is a good idea if a recording of these meetings could be done.
I would imagine we only remember part of what is said.
I’m pleased your meeting went well. I’m surprised you have been told to take your meds on an empty stomach. By coincidence most of my meds are on an empty stomach, mainly because I only eat one meal in the late afternoon / early evening.
In some people, protein (which is found mainly in meat, fish, eggs, cheese, yoghurt, nuts, beans and pulses) may interfere with the effects of their levodopa medication. Therefore it’s generally advised that you should take your Parkinson’s medication at least 30 to 45 minutes before meals .
How many months till your next appointment?
Best wishes
Steve2
Hi Steve2,
We took notes of what we went through in meeting - trying to be a bit organized.
Next one’s end February to see how meds settle.
Finding exercise does really helps me at the moment takes my mind off things gives me a boost and takes my mind off things.
Hi JD … I have my first appointment with a top neurologist specialising in Parkinson’s & neuropathy in 16 days time. I was going through all my medical paperwork to take to the consultation. I see that just over 2 years ago I could walk 10 miles a day with ease.
Now I struggle to walk more than 80 yards. I can just walk 200 yards if I force myself. Funny how quickly these things creep up on us.
Steve2
Sorry to hear that about your walking. Hope your meeting with the neurologist goes well. Have realized the neurologist appointments are like gold dust!
About 10 months ago I signed up with Benenden Health. A not for profit health insurance company. Costs me £15.50p a month. They cover pre-existing conditions.
I am allowed to spend up to £2,500 on 2 consultations, scan’s, blood tests to have my condition looked into. So I will see a teaching neurology consultant in Tunbridge Wells.
It took me 8 weeks to get the appointment, not bad considering the Xmas break.
If an NHS neurologist had been available to see me in a similar time frame I would have had to see him. But of course there isn’t.
You have to be a member for 6 months before you can use them.
Steve2
Sounds like a great deal, 6 lots of £15.50 gives you access to £2,500 of treatment / consultation.
They have given me a temporary Bupa membership. When I put in the referral through my Parkinson’s nurse they gave me a choice of 3 consultants. One in Tunbridge Wells which was 30 miles away or two in Brighton, which is also 30 miles away. Their own closest hospital is near Maidstone, again 30 miles away.
I have to monitor the costs if it comes to more than £2,500 I have to pay the extra.
It amazes me what a good deal it is.
Steve2