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Parkinson's Disease Tulip

The diagnosis circle

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Unread 03-14-2012, 10:44 AM   #1
waterwillow
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Hi, folks I live in N. Ireland. Just returned from respiratory consultant who feels strongly that I have Parkinsons of some form. He is also treating me for sleep apnea and I use CPAP.

I was referred to Neurologist last spring who on first sight stated I had parkinsons but on clinical tests changed his mind. Had MRI which showed some ischaemic changes in the frontal lobe and he felt this did not account for my symptoms.

My General Medical Practitioner then wrote to Neurologist stating he felt I had Parkinsons and a DaT scat was carried out, this too came back negative.

I am now referred to a Nerophysiotherapist for their opinion.

Feel like a ping pong ball, meanwhile no medication or treatment forthcoming.

Is it the same run around in the states and are we putting too much faith in the DaT scan?
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Unread 03-14-2012, 01:36 PM   #2
Muireann
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Hi Waterwillow,

You can have low dopamine production that is not yet putting you into the PD category. Personally, I believe lots of people are in this state and come out of it, if they are fortunate enough to deliberately or unknowingly start doing things that optimise their dopamine production capacity. Suggestions for how you might increase your well being:

1. Don't push for a PD dx just yet; it will trigger a drug protocol and PD drugs are not a cure, just a short term panacea that you will ultimately pay a huge price for in terms of side effects.

2. Decrease stress in your life, attend to anything you need to sort out in your work or personal life.

3. Look into learning stress management techniques such as meditation, tai chi, qigung, yoga.

4. Eat a balanced diet, fresh and unprocessed foods.

5. I would recommend trying Dopavite for six months. It is not a drug, just amino acids and vits, minerals at an optimal level for the production of your own dopamine. Everything in it is in food too, but this ensures the basic daily minimum requirements are met.

6. A lot of people with neurological problems are also b12 deficient so something like sublingual methylcobalamin, 5mg, from www.iherb.com would provide coverage. Again, six months treatment should show a difference and won't cause harm. B12 deficiency doesn't get measured in a full blood count, and it can be masked by taking folate. There is also controversy about optimal levels. I try to keep my levels really high, like 1,000, given my problems.

Regarding scans and dx, the best the DaTScan can do is show cell activity/inactivity, rather than cell death. Whether the cells are dead or malfunctional is a source of some controversy among patients as well as the medical community. On top of this, there is quite a bit of 'photoshopping' in the production and interpretation of all scans, so be wary of definitive dx's either way.

There is also now a recovery movement of people who believe you can recover from PD. Google Bianca Molle, Howard Shifke, John Coleman, and Dr Robert Rogers who has highlighted their cases.

Good luck in your recovery. I too live in Ireland, btw.
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Unread 03-15-2012, 07:54 AM   #3
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Thankyou so much for the time you have taken to reply to my post. It was the first I had ever done.

I have started a B12 supplement today. Unfortunately my employer has had to terminate my position as I have been out of work from last May. They were very understanding for such a long time but as no diagnosis was forthcoming and I am still deteriorating, be it more slowly, they really had no choice. I really have very little stress in my life and always had a positive outlook on life.

I will have to read up on some of the suggestions you have made.

Think I was "feeling sorry for myself" after talking to medical consultant yesterday LOL

Thanks again for your advice and I hope your own condition is stable or improving.
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Unread 03-15-2012, 03:45 PM   #4
Muireann
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You're welcome Waterwillow. Sorry to hear about the job loss; that's tough going.

An additional point about B12 - it really needs to be sublingual [suitable for absorption under the tongue, to address any malabsorption issues in the gut] and high dose, and preferably methylcobalamin rather than cyanocobalalmin. This is not readily available where I live in the Republic, but maybe NI is better served. I rely on iherb.com

If you want to chat by phone to a local pwp, send me a private message and i'll give you details.
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Unread 03-16-2012, 01:10 PM   #5
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I didn't realise that I would need to use that particular version of B12. I will check out if it is available locally. I will do as you suggest.

Have a good St Patricks day
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Unread 03-16-2012, 01:40 PM   #6
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If you choose sublingual do it on an empty stomach and wait an hour before eating. The vast majority of the B12 dissolves in the saliva and is swallowed. Presence of food will block any passive absorption in the intestine. Otherwise your response may not be what you hope for.
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Unread 03-18-2012, 02:28 PM   #7
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At last some good news, the Neuro consultant has decided that trying to dx with tests 3 to 4 months apart is not really working out so I am now on a waiting list for admission to hospital to run a battery of tests. Lets hope something positive comes from it.

I just can't believe that people on this site take such an interest in others welfare. Thankyou.
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Unread 03-24-2012, 12:30 PM   #8
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Hi Waterwillow, and welcome to the forum.

Would like to add a little to some of the excellent advice given already. PD is exceptionally difficult to diagnose, and if you read even a few of the current top threads you will find that even after many years of treatment and diagnosis there are people whose diagnosis may be changed. This is, we believe, because parkinson is a spectrum disorder. So it is best not to be in a hurry for any definitive diagnosis. However as someone still with a vague diagnosis after nine years I am well aware that this can cause practical and even emotional difficulties. Practical things like disability or work related issues may need immediate attention, and are not likely to wait for someone to make up their mind about what they are seeing. Still, you do not really want to be taking medication for a condition that you may not have. It is a pain to have a 'non-diagnosis', but means that doctors are more cautious about what they offer you.

Also it is not uncommon for 'parkinsons' to be used interchangeably for 'Parkinson disease' and 'parkinsonism' even by medical professionals. They may want you into this category so they can observe how things develop. So it can be less of a diagnosis sometimes than a categorisation.

There are a few of us around with negative datscan results who are responsive to sinemet, but who are more parkinsonian that those with 'dopa responsive dystonia' (another condition that is sinemet responsive). The jury is out on us, and no decisions have been made. This leaves us a bit in limbo. So your datscan result is not totally ruling you out of having parkinson, it's putting you in the 'unknown' bag.

I'd advise getting tested for B12 deficiency, but discontinue taking any folate supplementation for a while before doing so.

The tests you are likely to undergo are mostly to rule out PD than to rule it in. PD dx is a diagnosis of exclusion - meaning that a list of other conditions will be systematically ruled out - and clinical observation - meaning that an experienced neurologist specialising in PD will be able to observe the clinical signs of PD. However even this is somewhat misleading because we all present differently! There is no definitive set of symptoms, so the neuro will look for the signs, and match them with his/her observations and your descriptions of your symptoms. By it's very nature this process is somewhat subjective and not a little unsatisfactory for a patient wanting answers.

If your symptoms are really bothersome and your neuro says he sees PD you have choices. You can decide to medicate, to delay medication, to go down a self help route. A lot of this will depend on just how much your life is on hold to your symptoms. It is worth reflecting on just how much your life is really affected, as opposed to you being worried by what you are experiencing. This will help you make a decision on medicating. But let the choice be yours, not the neuros. The drugs for PD are powerful, alter brain function, and once you are on them your choices diminish - they are extremely difficult to discontinue.

Aside from medication, which only treats the symptoms, the most important thing you can do is exercise. To date out of the many and very varied things that have been offered to people with parkinson as things that will help it is the single best thing that you can do for yourself. There are forms of exercise that are clinically showing major improvements, such as forced exercise cycling, which may seem quite extreme if you are not an exercise person. Don't be put off by this. Whatever exercise you do, keeping moving is important. If you don't do any now, go for walking, tai chi, aqua therapy, dance, swimming, cycling, anything you will enjoy, that keeps your body moving, and go regularly.

Good luck with your tests, hope you find some answers soon, and that whatever they are you are able to find something that helps. Ask as much as you like here, there are lots of knowledgeable and helpful people here, you are not on your own.

Lindy
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Unread 04-11-2012, 04:33 PM   #9
waterwillow
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Well I am trying to relax and place any diagnosis at the back of my mind at the minute, I am to attend a physiotherapist this Monday coming and next. this is good as it will be before my hospital admission the end of the month. I am going to try and maximise what I can do. The only real change this month is that I have become a bit short tempered, As someone who was very relaxed about everything I could kick myself for this. Lindy thanks for your input. When I think about it the diagnosis is important but how I deal with it is more so. Great to be able to off load some of my thoughts
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