I have GCA and have just been diagnosed with Parkinson's Disease

[Trenny]

Is there anyone out there in the same boat? It is not nice. Now I don't know who or what to blame for my muscle weakness and inability to walk far. Perhaps it hasn't been the fault of the steroids after all! The only good thing is that this website caters for both.

[PMRpro Ambassador]

Trenny - I am sorry to hear that. I hope the treatment they can offer helps the wobbliness. One or other is bad enough - both is just most unfair. What made them suspect it?

I doubt anyone minds whether you are commenting about GCA or Parkinsons - after all, PMR makes us very wobbly and lots of the problems will be similar I suspect.

[Celtic PMRGCAuk volunteer]

Oh Trenny, as if GCA isn't enough to cope with. I hope you will find lots of helpful people in the Parkinson's Group on this site, and of course we're all still here for you. Virtual hugs.xx

[paddyfields]

Hi Trenny, I was diagnosed with PD in 2009 and the beginnings of what in the past twelve months has been dx as possible so-called untypical PMR - and nothing like as bad as some people being mainly the hip girdle but early last year "fluey" symptoms all over. Just to cheer you up (!!) its is also difficult sometimes to untangle the symptoms of PMR (but perhaps not GCR) from the effects of too fast reduction of the prednisolone.

I wonder does anyone else feel that they are a "auto-immune prone" type physically? One theory of PD is some autoimmune process at least partly involved. I seem to be prone to auto-immune conditions but also seem have something in my make-up which protects to some extent.. Hence underactive thyroid (stable for 20 years on 100 mcg thyroxin), tendency to mild occasional eczma and asthma and relatively mild PMR but enough to disturb my sleep more than I can afford.

Back to the PD, no one would know after five years that I have PD unless I tell them and I am amazingly fit looking for 75 considering the long term conditions I have clocked up which also include Vit. . B12 deficiency which can in the long run cause nurological symptoms as well as the more well known pernicious anaemia.

You may find that you get little feedback from the neuro because everyone's pattern of symptoms is individual - whether they could be more forthcoming with inf. is another issue. Exercise "use it or lose it" is a key principle with PD. Go on to the PD UK website and you will find a wealth of very clear inf. leaflets free to download and an excellent helpline which can help with medical and welfare issues. In a lot of areas there are NHS PD nurses and also PD UK welfare officers. Most areas have support groups. I think you qualify as "young onset PD" up to about 55 and there are groups for that as well.

You really have drawn the short straw with the PD and the GCR, both pretty alarming to cope with.

All the best

[PMRpro Ambassador in reply to paddyfields]

Anyone who has an autoimmune disorder is at increased risk of developing another, that is a known fact. Whether the risk of another increases with each extra one you develop I don't know - never seen it discussed.

However, quite a few patients have symptoms from a variety of different autoimmune labels - which suggests that maybe there is a long shelf of symptoms and what label you get depends on the symptoms that are being seen at the time. Often patients show symptoms of several syndromes - and then are diagnosed as having "mixed autoimmmune disorder". In general it doesn't make that much difference in that there are no cures as such for many manifestations and what is seen has to be managed as well as possible.

[paddyfields in reply to PMRpro]

Thanks for that Pmr Pro. Isn't the internet wonderful if you have a curious turn of mind.

[paddyfields]

I should perhaps add to my previous post that , although I stressed the importance of exercise, obviously you will usually have to take sufficient medication to restore function to allow you to exercise enough . Brisk walking and cycling are good for PD as is Thai Chi especially for balance and Yoga which is good for what ails you in my opinion. I am on what has lately become a cocktail of meds. as many PWP's are but

especially at my age am wary of being over-medicated, e.g. when I first had the aching in my quads, the neuro was all for upping the PD meds but I trusted my own instinct to resist this as none of my other previous PD symptoms had shown up.

[Trenny in reply to paddyfields]

What does PWP stnd for?

[paddyfields in reply to Trenny]

Persons With Parkinsons

[Trenny]

Many thanks, all. Interesting about autoimmune disorders. I take 150 mcg Thyroxine daily also.

You have given me encouragement to take the drugs *when* I get the prescription, Paddyfields. I telephoned the Dr’s surgery and then the consultant’s secretary this morning. It transpires that the letter to my GP hasn’t arrived and they are sending another one. Elsewhere on this site PMRPro suggested that it was a good idea to make a note of the consultant’s secretary, which I did - very useful advice.

Yes, I have been given the contact for support etc. My PD is ‘old onset’ - I am 83. I’ll browse through the PD UK website in due course. I go to exercise classes twice a week, but find it very difficult to get down to doing any on my own, even if I do have the list on the coffee table! I go up and down the stairs a lot, but feel very stiff and have to really concentrate not to shuffle when I walk on the level. Hopefully, I’ll get a prescription in the next week which may help.