A Good Sign?

I saw a neurology consultant for the first time in March 2012. He organised an MRI/MRA scan which I undertook. Having heard nothing further about a follow-up I called the NHS helpline with an enquiry about when I would hear - to be informed that the consultant no longer worked for the NHS (he was a locum). So they quickly arranged for an appointment with one of the guy's colleagues. So the process of evaluation starts over again.

But when I saw consultant #2 the results from the MRI scan hadn't been reported by the radiographer. So we still hadn't ruled out something else causing my symptoms.

The Parkinson's Nurse appeared on the scene at this point, and she instantly assessed that I didn't have MSA. In her opinion I didn't fit the profile she would expect with MSA - my physical tremors were evident 5 years ago and if this had been MSA then I should by now be crippled. And there am I happily doing occasional 5 mile walks in the countryside.

A short time later I get requested for an appointment again - and it's with consultant #1 who has re-appeared. 3 months after the MRI scan I finally found out that the radiographer has found nothing of interest in comparing MRI the recent MRI scan with one taken 5 years previously, so I'm currently up for a diagnosis for Parkinson's.

I submitted a claim to my critical illness insurers after seeing consultant #1 for the first time. They have just advised that they have rejected the claim. These two consultants wrote to my GP immediately following my first appointment with them, and unhelpfully used the words "Parkinson's Plus" and "Multiple Systems Atrophy" in those letters, which the insurers got hold of, and advised that as I was clearly suffering with P+ or MSA then my insurance didn't apply. Normal Parkinson's IS covered. They refused to accept evidence from the Parkinson's Nurse, stating that she wasn't qualified to provide an opinion.

I put up a defence to the insurers that those initial comments by the consultants were not supposed to be a diagnosis - such diagnosis can take months of not years and we had to await the formal diagnosis. But they've taken the results of the balance and coordination tests and confirmed that I must have P+ or MSA, and closed the claim.

Meanwhile, consultant #1 has just left again - and I'm told he's not coming back. So following a moan about being passed around and no-one being in charge of my diagnosis I now have an appointment with the head of neurology in mid-October, when hopefully I will get the firm diagnosis that I need.

I started taking Sinemet for the first time yesterday - I've been putting it off because I have never been a pill-popper and just hate taking medication. But as I am seeing this new consultant in 6 weeks time I figured he might want to know how I respond to Parkinson's medication. The result has been almost instantaneous. I can walk freely again, the pain in my legs has disappeared. I slept like a log last night. Just feeling on top of the world generally. And using a computer mouse and keyboard, whilst not perfect has definitely improved.

It's way too early to pass judgement on this, but IF my Parkinson's is responding to medication then I understand that the formal diagnosis definitely isn't going to be either Parkinson's Plus or MSA, because neither of those bad boys respond to medication. So if I can get a clear diagnosis for Parkinson's it'll be back to the critical illness insurers to press my claim. They have helpfully just increased my premiums by 10% from next month, I can't imagine that they are trying to force me to close my policy by making it prohibitively expensive for me to maintain.
you are obviously dealing with a bunch of crooks - good luck.
levadopa can help msa a bit for a while - but usually not for long and i believe not as much as you describe. unfortunately i don't believe there is currently a way of quickly proving you have normal pd - including datscan. perhaps you need a lawyer more than a doctor!
I don't feel the description 'crooks' applies to be honest. This is an insurance company, doing what insurance companies do best - at first sight of a claim they deny all responsibility. I don't consider this to be unexpected behaviour, though that might change in due course. For now I'm content that the insurers are acting appropriately.

They were 100% correct to state that there was no diagnosis for Parkinson's. The position I disagree with is that they had decided to take a letter written by a neurology consultant for just 15 minutes with NO other supporting evidence, and claim from that evidence that I've obviously got P+ or MSA, so I'm not covered. Their medical advisors would have known that was never a diagnosis which would stand up in a court of law, but they accepted it anyway.

There is no way the medical world would accept that P, P+ or MSA could be diagnosed in 15 minutes. But trust the good old insurers to make haste towards the first possible option for parachuting out of the situation.

My diagnosis continues. I've just been referred by my latest neurology consultant to the top man at Charing Cross Hospital in London who specialises in Parkinson's. Wouldn't be surprised if there's a DATSCAN coming my way shortly, because that's where they do the DATSCAN's in our region.

I haven't given up yet. We'll have to see whether I need the legal insurance policy which we have sitting by in case this needs to go legal. At present, because there is no firm diagnosis, I'm dealing with the insurance company directly. I will insert a lawyer between me and them once I get compelling evidence that should be covered by my insurance.

However, it's some critical illness insurance policy when you can no longer work due to illness, but because that illness isn't listed on their policy you can't claim. It would be like having car insurance, but the payout would only occur if the car which smashed into you was bright red in colour :)

I really don't have a lot of respect for insurance companies any more.
Am I to understand that according to your insurers Parkinsons plus and MSA are not critical illnesses????!!
As declared on my policy, they are not - and the insurers have already confirmed that P+ and MSA will not be covered should my diagnosis indicate that I am suffering from either of those.

For me this is a huge disappointment, I've invested in hundreds of pounds each month for several years in case the unfortunate should happen, and now that it has happened I'm feeling pretty sore that the sales guy that sold me this policy (an IFA who has seemingly been in trouble with the financial regulators for other misdeeds) has earned his commission and walked away - leaving me to pick up the cost of having invested in a less-than-ideal insurance policy.
the ABI best practice standards for critical illness cover says

3.23 Parkinson’s disease [before age x] – resulting in permanent symptoms
A definite diagnosis of Parkinson‟s disease [before age x] by a Consultant Neurologist.
There must be permanent clinical impairment of motor function with associated tremor, muscle rigidity and postural instability.
For the above definition, the following are not covered: Parkinson‟s disease secondary to drug abuse Other Parkinsonian syndromes

however that does seem to imply any definite diagnosis will do, not just the first one but you need to have it before you reach age x (usually 60)
Also seems in insist on ALL of tremor, rigidity and postural instability.

I posted this mainly for general interest.

My enquiry about our joint ritical illness policy was refused as they said they did not have any specific terms about Parkinson's and so I had to show my illness caused me to not care for myself - feeding, washing, dressing. Essentially the point that I was completely dependant. Life isn't easy but I am working and getting on with it. Pretty fed up though it was hardly going to be a bumper payout. Any one else found this?
Had a look at some old threads - am going to get all the paperwork back out again and see what's what!
so one company doesn't pay out because pd is listed and another company doesnt pay out because pd isnt listed. i think i see a pattern here!
saddlers company were going against the uk association of british crooks, sorry, insurers guidelines of 2006 and 2011. those are only guidelines but you could try http://www.financial-ombudsman.org.uk/