Whatever's causing this I'm not sure about but it's getting pretty bad.
I've of course read that it can be PD but I also have problems with arthritis of the shoulders and tendon problems.
What's happening is that my arms (and my legs too, but my arms are much worse) are taking on a life of their own. I don't seem to have any control or strength in either of them. They move in stiff, rachety movements that really hurt every time I reach for something or try to pick up something. Everything seems to hurt including the bones of my upper arms. They're both the same. They don't move in straight, fluid movements. They can fly all over the place at times. They were doing this a long time ago but in the beginning I had no pain at all. I just felt like a windmill at times but my brain was feeling as if I was totally drunk.
When they aren't giving me stabbing pains everywhere, a heavy, dull pain goes right my arms into my chest and through the whole of my torso. My wrists hurt and my ankles hurt.
My hands are either curled up into tight balls, my fingers fold over into abnormal positions or I have the opposite where my hands force themselves wide open, fingers splayed out as far as they can go (I'm not forcing this, they just do this themselves) and I have to try hard to get them to close. It feels as if all my muscles and nerves are fighting to work against each other. All the while my brain is really slow and everything I do is like ploughing through mud both mentally and physically.
I saw a rheumatologist yesterday and although he acknowledged that I have problems with arthritis, said it doesn't explain all my symptoms. Once again, he told me I need to see a neurologist (who will no doubt tell me it's a rheumatology problem, as has happened so many times so far).
Has this been, or is it a problem for any of those here with PD?
Thanks for any replies.
Frank
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frankaspergilus
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This is a kind of dystonia but both sides being the same is a contraindication to Parkinson's. This has some features of manganese poisoning - see the post above this one for details. Do you have any manganese exposure that you know of? Any tremor? Does levodopa help? Do you have a diagnosis (Other than arthritis which definitely does not explain this)? Are you taking any medication?
Definitely some kind of neurological problem. If any neurologist tries to tell you this is arthritis that is nonsense.
You do need to see a neurologist to get a proper diagnosis, and particularly a movement disorder specialist if you can.
Parkbear, now I'm really concerned. You are teetering towards the very fine boundaries between a quack and a bonafide doctor.
Friendly observation. How can you make a definitive statement such as the one you make in your last paragraph? How can you be so sure that it's a neurological problem and not arthritis or anything else?
Sometimes we get carried away and although I know that you mean well (lol, I really don't know that😤😇heh heh), I think that you should retract your layman's Google inspired diagnosis.
Personally, I like hearing peoples views. Everyone surely knows it’s not actual medical advice being given and everyone should rely on their formal support. This forum would be very dull without this sort of interaction
Parkbear, it's good now. Maybe go one step further and say Movement Disorders Specialist (MDS) ? I spelt it out for you so that your can just cut and paste 😂
Manganese poisoning I'm not sure about. I wouldn't have thought so because there seems to be a familial link to all of this as my father had similar issues but nowhere near as bad, and my brother has PD and has problems with dystonia and has also been told he definitely has one or two of the many possible forms of arthritis that exist.
I've seen so many neurologists I've lost count. Same with rhumatalogists. I've been told I don't have PD, I've been told I could have, I've been told it's musculoskeletal, various forms of arthritis Lyme, hormones, you name it.
As such, and after struggling with difficult symptoms for so long without a diagnosis, I take no medication at all. If I tremble, it's the type of inner, low level tremble that tells me somethings wrong. But there are a few causes of this type of tremor besides PD including arthritis, muscle problems and hormones and metabolic issues. I definitely don't have typical PD tremor.
I saw an MDS some years ago but, as many of us will know, the symptoms that you struggle with on a daily basis don't always repeat themselves by the time you've got yourself to the appointment. So then trying to describe the symptoms when you don't look as if there's anything wrong with you gives them nothing to work with and they only think of stress and anxiety, which, before anyone thinks it is, I guarantee 150%, it isn't.
I have yet another appointment with a different neuro in a month. Rather than PD, although I'll mention it to him, I'm going to push him to look at musculoskeletal and nervous system possibilities.
23 and me will do genetic testing to see if you have genetic mutations conferring a vulnerability to Parkinson's. You send them saliva in a vial that they provide.
I've tried them but, as I live in France, they won't do it. They say they're not allowed to operate in France, or perhaps it's their choice.
They only send results to the address where the kit was originally posted to and they won't send a kit to France.
I think, I may be wrong, that one would then need to have the results interpreted by medical specialists. I imagine that my French doctors might not be so keen to do that as I've already asked them a number of times to do DNA testing here in France as it is done in some hospitals. But, they say no because they don't think I have PD. I keep going round in the same circles.
I'll check 23andme again in a moment to see if they've changed the rules about posting kits to France. I'll let you know.
I am so glad you sent me that link. It looks like, whatever else is going on, borax could be a huge help in treating any arthritis related problems I'm having.
I'm going to watch all the videos now and find a source to order it from. Really appreciate that information, thanks.
I've emailed 23andme so I'll wait to see what they say.
"Painful shoulder, probably due to rigidity but frequently misdiagnosed as arthritis, bursitis, or rotator cuff, is one of the most frequent initial manifestations of PD (63)...
The dystonia completely resolved with levodopa"
Have you been given the opportunity so far to do a trial of a levodopa medication?
I know, it's weird. My mri's and scans say I have arthritis, bursitis and tendonopathy in both shoulders (the radiologists report) but the rheumatologist said I don't? How can their opinions differ when they're both looking at the same images? One opinion would require long term treatment and significant efforts to correct the problems, the other, no treatment of any kind. I think I live in an alternative dimension sometimes when I listen to these people. Perhaps this is why they keep referring me to neurologists. Pity the neuro's refer me back again.
I've asked my doctor if I should try levodopa. He said I could if I wanted to. He started me on a low dose but never followed up on it or checked if it was making a difference. I took it for almost three weeks and, to be honest, I felt no change at all. I'm not sure if he would have increased the dose following that.
Whether three weeks are long enough or not, I don't know. It certainly didn't make me feel any sharper cognitively. That was about a year ago. The problems with my limbs were not as difficult then by a long way.
I don't know what to expect from levodopa. I don't know how one would feel an improvement. I suppose it's different for everyone and imagine it works quicker for some than others. But I have no idea how it's meant to improve symptoms. I'm going to see a different neuro soon and push to see an MDS and ask about trying levodopa again.
The time for a dose of levodopa to reach therapeutic levels varies depending on formulation and the state of one's digestion, but roughly speaking about an hour, not days or weeks. Levodopa should improve Parkinson's motor symptoms - tremors, dystonia, and motor impairment. Response of symptoms is same day in my experience. For a relatively low dosage taken a few times a day, time-released versions - Sinemet CR or carbidopa levodopa ER are better than the immediate release version, in my opinion. Failure of symptoms to respond is evidence the condition is not Parkinson's. Given that your diagnosis is still in doubt and your motor symptoms are worse, another trial would not hurt.
Frank, I am not a doctor, nor a trained medical professional. I have seen this question and very similar questions several times before both here and in my personal experiences.
I suggest that you see an experienced Neurologist.
It is possible that you do not have Parkinsons but instead one of the diseases that are in a group sometimes referred to as Parkisons plus. This is not a good thing and I hope with all my heart that I am wrong. The questions that Park Bear asked are valid.
Yes, I've thought many times about PD plus, and the very first neuro's I saw years ago told me the same. What I have makes me feel very ill at times which I think is not as common as typical PD but can be with some of the PD plus illnesses. I don't know.
Frankly, (couldn't resist the pun), you need to see a Movement Disorders Specialist aka MDS. Gymbag is right. You should not really rely on sight unseen, anonymous, lay members of this forum for a diagnosis, however preliminary it might seem. Believe it or not, there is such a thing as the mind body connection which can be a powerful influencer and an unwelcome intrusion in your formal diagnosis by a trained physician.
MDS doctors are found at teaching hospitals around the world, generally. Some (very few), practice in small specialist groups but are hard to find.
Not suggesting in this specific case, but it is all too common so much that initially my primary care physician when consulted for my initial Parkinson's symptoms, thought so!
I've also learnt about the mind body connection and it does make a lot of sense. But, I know my body and my brain well enough to know, after 69 years of living in it, that I have serious issues and possibly more than one.
The hardest to cope with are cognitive problems which were my first symptoms. The physical problems I described in my post really began five or six years later and have steadily evolved to where I am now. The two combined now are hard to live with.
I know arthritis is an issue and that alone can make life tough for many people. But walking into walls and into doorframes, falling to the floor, not being able to get up off the floor, mental confusion and much more (which were all there at the beginning)? I have no idea.
But, I saw this in my father to a much lesser degree and in my brother who has PD.
I've seen neurologists and rhumatologists many times who keep sending me back and forth saying it's not their specialty but the other's.
I've written more above in replies to other kind posters.
When I first started feeling off, really off, many years ago, and doctors couldn't find a reason for it, I began to think perhaps something in my environment, or something I was doing every day was causing my problems.
Amongst many other possibilities that looked like it "might" fit was mold or fungal infections. I researched it and also joined the HU forum, on the fungal infections group, for the first time under that name so I would remember it easily.
I did a lot of testing and eventually dismissed that theory.
The fact that I have a family history of my PD symptoms, and that those I share them with, didn't live in the same country as I did at the time, also sort of didn't make it likely.
Frank you completely omit any mention of any medication or supplements you take. I could not give a proper response without knowing more but it sounds like a PD problem to me. In particular you mention cogwheel rachety movement of your arms. Classic PD i would have thought.
No meds because I don't have a firm diagnosis. I take vit d, magnesium, turmeric for pain. I know I ought to take more b12 than I do.
I agree about the ratchety movements being PD but I have so much pain now that I wonder if it's something in addition to PD or if it really is just PD.
Have you considered myalgia which I believe is sometimes a part of PD rather than a separate condition. I suspect that levadopa treatment would help alot if it is. Pain is rated as the no 1 distressing PD symptom by many people.
I have meet two people with difficult pd diagnosis and another wrongly diagnosed but still with cerebral problems and another where she was in a wheelchair and told it was psycho somatic. 2 days of l dopa and she could stand again. It is very difficult for you. I woulD be wanting to see the most experienced MDS in the most prestigious hospital. They are the most likely to have the knowledge plus experience.
Frank : You will find many Parkys also have Arthritis and many other problems from constipation to muscle pain because the inability to move and lack of exercise leads them there eventually. There is a difference in what you are describing . The onset severity being the big one. Continue to search for cause , and demand ( nicely) a proper effective treatment.
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