NOT PMR or GCA ??

[Triumph650]

Well I have posted here before on the ups and downs of my diagnosis and things have may have changed for the worst I guess.

Looks like I possibly have Parkinson's disease after the many MRI, CT and Multiple X-Rays recently and then a visit to new Rheumatologist yesterday.

As I mentioned recently, the first visit to this new Rheumatologist, I was not impressed with, but all the scans I had done and blood tests show me good for my age, other than mild arthritis and a small partial lower right lung has collapsed (possibly pneumonia in the past) and a 5mm benign cyst on my liver which is OK.

I now need a referral to a Neurologist which will be about June if I am lucky, I guess there is no real hurry.

My mother had and died from Parkinson's complications and my uncle (mum's brother) has lived with Parkinson's for 14 year and is now 93 in a care facility with all faculties, except uses a walking frame. Although Parkinson's is not thought to be genetic.

One thing I have noticed in hindsight, is a number of points that possibly point to Parkinson's and that my wife (a nurse) has noticed over time are these: Read here if interested nia.nih.gov/health/parkinso...

My wife and Rheumy had a symptom banter back and forth using me as the ball, all of a sudden Rheumy said you need to see a Neurologist you don't have PMR or GCA.

1. I have been on Duloxetine (Cymbalta) for many years to help with summer, night time anxiety, according to the research those on Duloxetine are 5 times more likely to get Parkinson/s. (Read what you will but the research is going on)

2. My first symptom of CGA was partial loss of site in right eye, Ophthalmologist says either GCA or Stroke, and seeing I didn't present with what looked like a stroke, he opted for GCA and treated me accordingly. 12 months and .........................................................

3. Medical people ask me, when did so and so happen, or how long has this condition been like this, I have no clue because I do not react until something really bugs or debilitates me (typical male I guess) So thinking back ..........................

4. I have noticed I dribble from right side of my mouth and mouth open more, not recently, but for a while and shrugged it off, but becoming more noticeable.

5. Looking back again into the dim past, the Ophthalmologist said GCA or Stroke, I now believe possibly TIA although still to be professionally diagnosed. Prior to all this PMR & GCA prednisone roller coaster, I did have a couple of severe migraines, could that bea TIA and the precursor to the blood supply blockage to my right optic nerve ?? or do we Google Drs. read too much into things. I am not a fool and read internet information only from reputable medical and research sites.

Parkinson’s has four main symptoms:

Tremor in hands, arms, legs, jaw, or head.

Muscle stiffness, where muscle remains contracted for a long time.

Slowness of movement.

Impaired balance and coordination, sometimes leading to falls.

Other symptoms may include:

Depression and other emotional changes.

Difficulty swallowing, chewing, and speaking

Urinary problems or constipation

Other than the Tremor I have in some way or form, all the above.

I will let everyone know my final outcome is, in a much shorter version next time.

Thanks for the caring in the past and you all take care ❤️

[DorsetLady PMRGCAuk volunteer]

Sorry to hear of your diagnosis - and all the best for future...

[PMRpro Ambassador]

"Although Parkinson's is not thought to be genetic."

Oh yes it is! For some at least there is a link but it isn't fully understood:

hopkinsmedicine.org/health/...

Anyway - all the best for coming to terms with the change of diagnosis. There has been a lot of progress in the last few years I think although I don't read the Parkinson's links that come into my Inbox as often or closely as I might! I had a friend in the UK who had fairly early onset Parkinson's and she was partaking in studies at Newcastle. I wonder how she got on - we lost touch when I moved here.

[Triumph650 in reply to PMRpro]

Thanks PMRpro, I feel also there must be genetics also.

[PMRpro Ambassador in reply to Triumph650]

It's like PMR - not a gene that can be blamed as the cause but a set of genes that make it more likely given other factors being aligned.

[SheffieldJane]

sending you best wishes for the best outcome. Let us know how it goes. 🌷

[Pixix]

Wishing you the best treatment from now on, & best wishes! I have the tremor, first in left hand, now both. I have the balance & falls issues. Fell off our rockery & hit head on rock, hurt toes, shoulders etc! But I’m OK. I had a brain MRI scan two weeks ago, waiting for results. Diagnosis, atm, is Essential Tremor, & I’m happy to keep it, too! I have both polymyalgia& fibromyalgia, both well diagnosed. Please take care, S x

[Preacherball]

Wow, tht's tough. Best wishes as you continue the journey and hopefully get some more definitive answers about what you are dealing with,

[powerwalk]

Very best of luck with this. Do let us know how you get on with Neurologist.

[pata63]

Sorry to hear this. My father had Parkinsons and it was no fun for anybody. It took some years to diagnose and then begin treatment on Sinemet to slow down progression. Onset would have been in his mid 60s. He never had any tremors which is one of the less common presentations and may have slowed down diagnosis. I suspect that getting a Parkinsons diagnosis when you don't have tremors is like getting a PMR diagnosis when you don't have raised CRP or ESR and are under 50. 😉 We know those stories. He did lose his sense of smell which seemed odd at the time and made sense after diagnosis.

He ended his days in a care facility because my mother couldn't lift him safely, his wheel chair couldn't fit through the door to the bathroom or bedroom, and I was living half way around the world. He donated his body to Scripps Research in LaJolla CA (where his neurologist was based) and they did an autopsy of his brain to glean more info. The neurologist said to my mother that his wasn't an inheritable version, but this was in 1991 before much of the modern genetics revolution. So who knows.

As part of my PMR diagnosis I was checked over and family history done by several specialists. I've got Essential Tremor like @Pixix and that always gets lots of attention in case it is Parkinsons starting to show itself. This year at the ripe old age of 70 I've had a couple of falls for the first time, but nothing serious. I've also started to do the leaning forward posture, and am feeling much less coordinated and stable on my feet. So I'm keeping a watching brief for now. At least I still have a keen sense of smell 😀

I've just tapered down to 3.5mg Pred for my PMR and that's all going well so far. As a result I've got that reluctance (often associated with males) to poke into perhaps having Parkinsons as well. 😱I've always felt lucky that I seem to have a straightforward PMR and an excellent GP. I don't want to start in on a new differential diagnosis saga just now when I seem to be moving past PMR after 5 years.

Best wishes for your ongoing diagnosis and treatment. In my father's case getting the diagnosis made sense of so many things which we had observed and was a great relief. Please do keep us informed.

[jarn]

With your positive and inquisitive attitude, you will cope beautifully. Thank you for sharing this and you know that the folks on this Forum will be rooting for you. You can do it!