Help with possible symptoms, especially arm swing

Hi Everyone

I have a few concerns and subsequently, a couple of questions.  I'll try and keep it brief.  It has been a strange ten years of on and off symptoms, which started with balance and dizziness issues, tinnitus, poor co-ordination, muscle fatigue, espeically in legs.  I also started to get (what I now know to be) dysautomnia symptoms, including postural tachycardia, low blood pressure, digestion issues, body temperature problems, brain fog etc. I have had PoTS diagnosed February 2017 and am taking Midodrine.

I have now, however realised that my left arm doesnt move ike my right when I walk.  On reflection, I have kind of noticed this as it is summer and I am not wearing coats with pockets and also we are doing the house up and there is a mirror been posiitoned at the end of a walkway, so I can see myself. The best way to describe it is like it just sits idle by my side, either passively or almost nestled into my body or I hold it up so my hand is at chest level.  An example of when I would notice it is when I say carry cups and things to the dishwasher and then need to use two hands and there it is, just stuck there.  I have no issues using it when I need to but basically what I am saying is when I'm *not* thinking about it, it doesnt do anything and definitely isnt like my right arm.  It also feels a little different, but I cannot really out that into words, it also tires easier than my right when typing, feels a bit weak in comparison.

I know I should really go to the GP but after ten years of battling with a set of symptoms that have baffled doctor after doctor, I'm not sure I can face going with what they will see as yet another symptom if it might be something else, I reckon they have me down as a malingerer as it is - the PoTS symptoms have a tendency to do this as it affects lots of aspects of normal health.

I've had dozens of tests, scans, MRI and had lots of conditions ruled out.

Million dollar question, in light of my other symptoms, do I pursue this further?  I guess I kind of want to hear what other peple think as bits of me are a little scared and I havent mentioned this to anyone else as a result, not even my other half....


Thanks in advance 

Hi Littlewren, I may not be the best person to speak up but you must discuss your concern about your issues with your partner.  Next, get an appointment with your GP and if they can't come up with an answer then ask to be referred to a Neurologist, at the end of the day you have got issues and you should get them sorted for a better quality of life.  My PD is in my right arm and I look as if I am drunk when out walking and don't look the full shilling, my right arm swings in time with the left as opposed to doing a left right marching motion.  Hope my post draws comments from those on here who have had PD longer than myself but what ever happens seek help, don't suffer in silence.

Hi Littlewren, 

Cruisecontrollers advice was right, in that first you should discuss your fears with your partner. Stress doesn't do you any good. An appointment with your GP and a neurologist referral next. 

It must be hard to approach the medical field after your previous experience but worrying alone won't help. 

OH has had no arm swing in both arms for many years and is on year 20 from diagnosis. He can't even make his arms swing for more than few times when prompted.

Hi Littlewren

As I understand PoTs is cardiac condition, where the heart speeds up when one goes from inactive (sitting) to active moving about.

Some of your other symptoms could be PD. What I'm surprised at is that after ten years you haven't had a definitive diagnosis. What's going on? Push for your neurologist to give you a definitive answer or at least a couple of probables.

Yours chirpily,




Thank you so much people, it is nice to know you are around....yes, just getting the PoTS diagnosis was challenging, I feel like I have no fight left to be honest, even though the Midodrine is helping when I eat and stand up but you know what, friends and family think I'm sorted because all the dysautomnia has a name and some medication.  I havent explained there is usually an underlying cause because I don't want to worry people.  My partner is so understanding which I think is making it harder to mention anything - I keep hoping he will notice my arm and then I can drop something in to the converstation.

I wrote my original  post in a rush because I didnt want him to see I had this page open - I forgot to say I am female, 43, don't drink, don't smoke, normal weight and have an existing diagnosis of narcolepsy with cataplexy, not something that sits quite right with me, but I had all the tests, wired up, overnight, daytime with like 'forced' sleeps, which I did and each time I went into REM - I dont know why I don't quite think I have it...another thing I dont really tell people.

I can kind of make the arm move when I notice it but weirdly, I keep forgetting I have this going on, so it isnt like I'm constantly obsessing over it, I notice it when it is hanging there or stuck to my side, or stuck up at chest level.

I know I should see a doctor, I'm going to have a think today, my OH is off now for the summer so it will be difficult to go to the GP alone (I dont drive becasue of the sleep thing) - I think I maybe want to get some primary investigations before telling him, I think that is related to not worrying him for nothing.  I am worried but I can't bear to worry him.  Part of me thinks, well if I have an underlying condition, it will come out in the wash anyway.

Another thing I wanted to ask, do people's symptoms come in waves, like 'flares'? Whatever is going on with me tends to do this, starts with low appetite, flat mood (not depressed but not sparkly) bit of weight loss and basically walking worse than ever like I'm drunk. I have only Googled about the arm, I can't face anymore reading.

Thanks again, I'll keep you updated - I really appreciate your responses, means a lot.


Hi Jules


PoTS is classed as dysautomnia, you see a cardiologist but there is nothing wrong with the structure of the heart, the tachycardia is a response to blood pressure dropping on a change of position from lying or sitting to standing. PoTS UK website is the best place for info.  I think the PoTS has been a bit of a drip feed of bits of this going wrong and bits of that! I can't tell you how many times I've asked a medical professional why my heart beats fast after eating - they didnt know.  Also, I dont have a neurologist, but I do my best to get myself sorted.  Thanks for reply, hard to write at length as dont want partner to see the page open.

Hi Littlewren,

It sounds like you're really going through the mill just now.

I agree you should talk to your OH. It makes such a difference to voice concerns to one who you know cares for you. I wouldn't mind betting he is very worried anyway and not wanting to bother you with his worries.If you shut him out and go alone for appointments without telling him he may well be upset and feel excluded, which I know is not your intention.

Sometimes two pairs of ears are better than one for remembering what has been said to you. I know when stressed I forget some things that have been said.

He may even already be aware of some of the symptoms you think you are hiding from him, I know my children noticed some of my symptoms and both independently suspected Parkinsons

Thanks Daffy

He has just asked me if I'm ok, when I said I was fine, he pushed to ask if I have a migraine, he knows something is amiss.  I am just so torn between dropping some sort of potential bombshell comprising 'I have yet another brand new symptom and hunch' or just going alone until I know more - but I have a feeling you're right, I think he will feel upset if I go to the docs on my own, we tell each other everything.  I dont think I am thinking right if I'm honest, I think I am mistaking being pragmatic for being the best way of dealing with things and it probably isnt.

Hi littlewren,

I know what you mean, you can think yourself to a standstill. Your partner sounds marvellously supportive&clearly wants to be involved with your problems. I am very lucky in that my husband is really supportive too. You can cope with so much more if you're doing it together - then you'll be an unstoppable force tackling neurologist for help you should be getting. Take care

Littlewren, with your partner being off work now for the Summer all the more reason to talk to him.  Do not try to do this alone, talk to him and tell him how you feel and make sure he goes with you to see the GP, as Daffy says, two pairs of ears are better than one and do get a referral to a Neurologist.  As I said before, don't suffer in silence and get your husband involved asap to the extent of showing him what you've written on here and let him see our responses.  He sounds like the perfect partner so please don't shut him out, he really cares for your well being, fight this thing together.

Thanks guys - you are all very nice, summonning up the courage to talk to him.

I've told my OH and we are going to see a (good) GP next Thursday the 3rd and take it from there.  Thank you again to everyone for their input, very much appreciated.

Great news Littlewren, you know it makes good sense to get your husband on board.  Keep us updated on your progress please I am sure that everyone who has contributed to your post will be keen to know how you get on.

Well done. Good luck with your appmt. 

I will Cruisey - I'm going to try and stay positive and not think about stuff too much until I know anything else, we went to the beach today, I will keep busy.  As soon as I know anything, I'll report back. Thanks again x

Thank you DivineR x

so glad you've spoken to you OH. A trouble shared is a trouble halved as the saying goes. Well, it doesn't quite halve it I know but it certainly makes it easier to live with. Very best of luck with getting some answers at your appointment

Thank you Daffy, I'm just relieved I could book an appointment with one of the GPs with a nice normal manner, not one who doesnt really like the idea of people saying they don't think they feel well.  Also, OH will be with me so got the best back up.  I've found a movement disorder specialist who will see me if GP agrees on referral, which he should do now there is something to see!  I do keep hoping the swing will come back but it hasn't, I can make it swing but I am making a conscious movement, so that still doesnt look like the right as I'm re-enacting a swing, not letting it do its own.  So weird. I'll update next week x

Hi Littlewren

A listening GP makes all the difference, especially when you find yourself having to say there's something wrong but you don't know what. Have a relaxing weekend now everything is all in the open. Very best wishes for you both for next week

P.S. I relate to the arm swing. Know just what you mean about being able to make it swing, if I remember, but sometimes I manage to get both arms swinging together instead of alternately if I try to go to fast! Now I know that does look weird.