Not everything is due to PD

[jillfd]

After mentioning debilitating ankle pain to my PD docs and having them just shrug it off, I went to a general practice doctor and X-rays showed that I had a healed ankle fracture. Turns out 2 years ago I twisted my ankle hiking and I had actually broken it in 2 places. The bones had healed but the muscles and ligaments were still not right. . A brace and 7 visits of PT and it is SO much better.

I had assumed the ongoing muscle pain was from PD. I discussed with my family doc the necessity of looking at symptoms without overlaying the PD diagnosis first.

[LauraL]

I totally understand. I get frustrated when I have pains that could be Parkinsons related and I schedule an appointment with my neurologist to find out they are sending me to my family doctor or another type of specialist. Right now I have debilitating pain that is in the back of my neck and both arms to my elbows. I have trouble sleeping and when I get up I can't raise my arms high enough to turn the lights on or rotate my arms to get my pants up in the back. After a shower it gets better but never goes away. My neurologist sent me to an orthopedic doctor and he is sending me to PT.

I wish all PD related symptoms would appear "highlighted" in hot pink so we would't waste time or money seeking the wrong advice.

[Jupeter in reply to LauraL]

I agree with both of you, it would be nice to have a definitive list of PD symptoms but it isn't really going to happen. You only have to look at the various symptoms and effects described by people on this site to realise that we are all different. I have exactly the same problem with my arms that you have but I was having that problem long before my P was diagnosed. I have had several cortisone injections in my shoulders with only short lasting improvement. I hope your treatment is more successful.

My physical condition is also exacerbated by osteo-arthritis and this doesn't combine too well with P, making walking any distance beyond about 50 yards impossible. But it is difficult to determine exactly which condition is causing which pain. Since nothing seems to be able to cure it, perhaps it doesn't matter!

[arthur84 in reply to Jupeter]

Jupiter, I think you do have arthritis, I have had Rheumatoid Arthritis for years, PD for 8, lots of pain, physical therapy-massage helps.

I have learned so much about PD on this web. Hope it never shuts down. My big problem is shortness of breath, pain in abdomen, see a new neuro tomorrow, hopefully she can "do magic". Other health issues interfere with so many Parkinson meds. Every hr is different, so depressing, don't know what or when to eat?? Interferes with absorption-apparently.

Good luck Arthur84

[Jupeter in reply to arthur84]

Arthur, I concur about shortness of breath but not sure about food absorption.

The breathing seems to be triggered by any sustained use of stomach muscles. e.g. prolonged nose-blowing spells or bathroom visits. It is very much like panic attacks, but goes away very quickly if I lie down and relax my stomach muscles.

I retain a hearty appetite but I have lost about 2.5kg in the past 3 or 4 years. I had to dispose of several shirts, trousers etc because I went from an expanding 40in waste down to a 36in. But I attribute most of that to muscle loss due to lack of exercise.

But yoou are right, it is the utter unpredictability of events that is so frustrating.

[Anthonyian in reply to arthur84]

Hi I have suffered with shortness of breath for the past 6months I walk every day ,but only for 20minutes I am on pain medication tapentadol for chronic pain for pudendul nerve as well as madapar and premipexole parkinsons I have app with Parkinson's nurse this week so if it is medication she will help me

[Anthonyian in reply to arthur84]

Hi I have suffered with shortness of breath for the past 6months I walk every day ,but only for 20minutes I am on pain medication tapentadol for chronic pain for pudendul nerve as well as madapar and premipexole parkinsons I have app with Parkinson's nurse this week so if it is medication she will help me

[beang]

Same goes for "behavior " analysis.

[honeycombe3]

Laura,

I think you are from USA so things may be different but here in UK we have a national project called 'Expert Patient. This covers all aspects of the health system from the patient's perspective so that when one has a concern the pathway for raising this with the NHS services should be quite clear.

Re life after Parkinson's - this is the title of a post I put on here many years ago after experiencing similar treatment to you & the others. I was dxd 10 yrs ago & at first any symptom or change in bodily function was attributed to PD. Strategies for improving this include getting your PD nurse onside. They have had years of treating patients with PD & can often spot common links - or not. I always treat any symptom of physical discomfort as just that & I follow the 'normal' path to treatment: GP, consultant, assessment, treatment. The buzzword in the NHS at present is 'informed consent' so get yourself informed, be firm & don't take no for answer.