Back to square one?

On reflection, following my recent visit to the neurologist (previous post), it begins to feel as though I am actually a step backwards from where I was when I had a diagnosis of 'idiopathic PD'. Now I don't have that; just some vague 'Parkinsonism' whose origin is unknown and, it follows, whose best treatment is uncertain. Dr Rhys Davies commented that the trials of things like creatine (which I am taking since it isn't harmful and just might be helpful) may not have any effect on me since they are only known to have effects for 'proper' PD.

What I didn't think to say at the time was that my new vague diagnostic status implies that the PD drugs I am taking might not be the best - or even the right - ones for this peculiar and often painful neuromuscular condition. They may also have the negative effect of causing my serious insomnia. That they do have some beneficial effect  I have little doubt since I have several times experimented with reducing or stopping them. I usually feel quite good for a day or so when I do these trials but then the pains increase and so do the tremors. So I go back on the drugs.

So where do I go from here? If, as Dr Davies said, pain specialists are unlikely to be able to help with this sort of pain, what can I do to move things along so that treatment is more effective than at present? And frankly, I'm stumped. Talking with my GP cousins a while back rather suggests that what I need for another opinion is not a specialist at all, but a 'generalist' physician who won't look at me with PD-tinted glasses. Indeed, she may see a patient suffering from something rather different which requires different drug treatment. But where do I find a general physician who can either corroborate my Parkinsonism status or suggest some other line which might be worth following?

Ideas welcomed!

Neurologist visit and results

Val and I went to the neurologist, Dr Rhys Davies (of the Walton Centre, Liverpool) yesterday morning for my 6-monthly review. Happily, this was at the Bangor hospital, Ysbyty Gwynedd.

I had prepared for this important review with a list of questions as well as an up-to-present completed Unified Parkinson’s Disease Rating Scale (UPDRS), a long questionnaire which would normally be completed by the doctor. My idea in doing this is to achieve some measure of objectivity in the progress of the disease. Dr Davies congratulated me on taking the initiative on this and retained my results so far for his files on my case.

The questions is asked I've listed below:

1. Neuropathic pain-relieving drugs to try, as suggested by GP (cousin, Cathy Williams). At present, suffer serious discomfort and insomnia. E.g. amitriptiline, pregabalin, duloxetine. Or tricyclic antidepressants recommended if the sleep pattern is disturbed (http://www.patient.co.uk/doctor/parkinsons-disease-management). Referral to pain management specialist (e.g. Dr Bernhard Frank at Walton Centre)? Private or NHS, depending on time

His response: Pain management is not for this type of problem. He knows Bernhard Frank well but does not think that he or anyone else in this field can help. On the other hand, amitriptiline  could well be useful, starting at a low dose. It could help me sleep better and has the useful 'off-label' effect of reducing Parkinson-type tremors.

2. Dopaminergic drugs: do they quickly lose efficacy if taken at max dose? Deliberately reduced doses of co-careldopa and pramipexole to 125mg of former and 1.4mg of latter every 12h since 1/9/12 without significant change. Previously taking above dose three times daily. Pramipexole not as helpful as I’d hoped. Worth trying other dopamine agonists? What other drugs available if these cease to be helpful? Problem with all these drugs is that they only mask symptoms and do not slow or stop the disease. So how about 3-6 below?

His response: We discussed the experiments with different doses which I have conducted on myself and he agrees that what I am taking now sounds about right. No change needed.

3. ‘Ibuprofen May Reduce Risk of Developing Parkinson's Disease, Study Suggests’ ScienceDaily (Mar. 4, 2011). So I am taking 200mg each day on basis that it won’t harm me but could reduce damage. ‘Ibuprofen could be a potential neuroprotective agent’ concluded researcher in study at Harvard School of Public Health. Okay to continue this?

His response to 3,4 and 5: There is no harm in trying any of these non-prescription items. Some of his patients have taken creatine and found it helpful. But there is one big caveat: see conclusions, below this list

4. Nicotine patches appear to slow disease progression. ‘Nicotine has a neuroprotective effect on dopaminergic neurons’ (http://www.ncbi.nlm.nih.gov/pubmed/17581257). Any reason I shouldn’t try them for a few months? Protocol for use available from http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=treatments&topic=nicotine-patches-as-treatme-1

5. Creatine is evidently neuroprotective and reduces the loss of dopamine within the striatum and the loss of dopaminergic neurons in the substantia nigra (http://www.ncbi.nlm.nih.gov/pubmed/21448659)  Creatine widely available as food supplement and generally depleted in vegetarians (I am one).

6. Rasagiline (MAO-B inhibitor) reduced the long-term progression and symptoms in PD and delayed the need for antiparkinsonian drugs and patients had lower scores on the PD rating scale in a Phase III study. Would need prescription and possible change of drugs taken at present. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3221408/)

His response: Rasagiline has been found to be somewhat useful in PD and he has used it with some patients, but see conclusions below.

He did a few of the standard tests on me (finger-tapping and balance) and said that it seemed to him that I was slightly better than I was 6 months ago. Val agreed with this, noting that when visitors who know of my condition come to the house, they remark that I am generally looking well and better than I had been when they last saw me. I certainly don't think I'm worse though, as I pointed out, it's not the PD-like symptoms (slight loss of motor control when manipulating things with my hands, for example) which bother me, it is the persistent muscular aching across my shoulder girdle, neck and upper arms plus around my groin and hamstring muscles down to my knees that really affect my quality of life. It is the groin pain which is at least partly responsible for my insomnia since, once I am awake, I cannot find a comfortable position in which to go to sleep so I often don't. Of late, I have often taken to getting up early (6-7 am) and working with my computer upstairs so I don't disturb Val who needs her 8 hours! I seem to be able to get by on much less though I do tend to fall asleep whilst being read to by Val or watching the TV; a great nuisance.

Finally, the doctor dropped a minor bombshell. I do not, he said, have idiopathic (=no known cause) Parkinson's Disease. I simply don't have the right symptoms. Neither do I appear to have Multiple Systems Atrophy (MSA), a far worse disease, also with no cure. What I have is a rare (possibly unique) form of parkinsonism for which the outcome is unknowable. It might progress as the other neuropathic diseases or stabilise with the medications I'm taking or trying. No-one can say. And because it is definitely not standard PD, the alternatives which I listed above which do seem to have useful effects for PD may not have any useful effects for me but there's no harm in trying them anyway. 

So Val had already ordered some creatine powder and I've started 'loading' with it today. It is apparently very safe and vegetarians generally lack it. I've been taking ibuprofen for about a month. I might try nicotine patches after a few weeks have elapsed to allow me to see if the creatine is at all helpful.

So overall, Val and I felt somewhat more optimistic than we have been. I am doing everything I can to maintain my health and fitness - not difficult with all the fairly heavy work to be done on the farm which, incidentally, I love. I have a good muscle-stretching set of exercises which take me around 20 minutes to complete every morning as a routine. By the way, I keep a brief diary of my condition, chiefly related to any changes I try in drugs or in dosages of those drugs. My aim is to keep doses as low as I can consistent with a reasonable quality of life. I know, from several trials, that I do become worse if I reduce either the dopamine or dopamine agonist. At present, I am stable on what I am taking. Let's hope some of these new things will improve matters.