I've been poorly since last December. I spent Xmas in hospital after having what I call a "funny" episode - something that felt like heart attack (chest pain, lightheadedness, pain down the arm and up the neck) but proved not to be one, thank goodness. I've seen many cardiologists, have been to A&E many times because despite being discharged from the hospital as being "fine", I felt awful. I couldn't stand up without the room spinning with me, I couldn't breathe properly, any little effort (and that involved taken just the few steps to the bathroom) caused breathlessness and dry cough, my heart felt as if it wanted to jump out of the chest, and so on.
Until one of the cardiologists suggested POTS (postural orthostatic tachycardia syndrome). That galvanised me into action, because on reading the symptoms I realised that they match mine. So I made an appointment with a specialist in autonomic dysfunction in London - waited 8 weeks for an appointment despite it being a private one. The guy is in great demand, it seems.
On a superficial examination he suggested EDS III/joint hypermobility and some sort of autonomic dysfunction. He sent me to have specific tests to check autonomic response. I had those on a day when I didn't feel that badly - isn't that always the case.
I finally saw him again yesterday for follow up. The tests were more or less normal, save for one or two anomalies. He spent a lot of time showing me the results, while I was getting impatient thinking of how many questions I still had for him.
Bottom line is that I have mild POTS or a "tendency" to POTS. You may know that POTS is categorised in mild, severe, critical etc based on the number of abnormal tests one has. As these tests depend on how one fares on the day, you can imagine how impressed I was to be told all was mostly normal, particularly given how abnormal I've been lately.
Still, he's not starting me on any drugs just yet - he's told me to increase salt and water intake (the former helps to retain the latter, which for some reason POTSies don't seem to be able to do), to wear compression stockings and to use a stress ball each time I get vertical (to increase the blood pressure).
He's sending me for an upright MRI to check for Chiari malformation and for a neck MRI, both of those because my blood pressure seems to fall too much when I raise my arms - not that I've noticed.
He's also sending me to a physio specialised in hypermobility to advise on specific exercises.
By the time he finished, I barely had a chance to ask any of my questions. The message seems to be - go do all these and come back in a month. Firstly, if I manage to get an appointment in another month, that would be fantastic, it will probably be more like 3 months by the time I have the MRIs etc and given his waiting list. Secondly, I have already been increasing the intake of water and salt and although they helped, they didn't resolve all the symptoms. I still cannot walk too far without my legs killing me and blood pressure dropping at dangerous levels. I still have the terrible adrenaline surges and the dreadful dizziness. And so on.
Disappointed? Oh yeah. Enraged too. After seeing so many doctors and having so many tests, it has come down to assurances that all I've been feeling is really just a mild thing. Don't get me wrong, I'd be thrilled for it to be mild had it not for the skewed results. And yepee that I don't get to start a new drug. But I can't help but feel short changed.
Since then I've been busy making a list of things I didn't get to ask, so I can email him. At least that way I can refer to the list next time I see him. Meanwhile I'm continuing to drink loads of water and add salt to everything - yuk.
Thanks for listening xx
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Purpletop
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I understand how frustrating it feels to wait for appointments, tests, results and a diagnosis. As I'm going through it, I try to pray for patience and remind myself that we really do have the world's best medical care and doctors here in the USA.
Orthoststic hypotension is scary. In the past two years, I've lost 60 pounds. I went through two months recently when I would get dizzy, my vision would "go black" and I would actually fall down just after I stood up. (In my case, my heart and vessels just needed time to readjust to my new body size.)
Please be careful!!! A fall can cause any of us with lupus terrible consequences! Even though I seldom get dizzy now, I've maintained the habit of always holding onto something when I stand up and standing still for a minute before I let go.
And be so careful on stairs!
I'm hoping you may have the answers to some of your questions by now.
I too think we have the best medical professionals Here in the U.S. Lord knows I have seen a lot of them. I will have to admit for my area in east central Alabama, I usually don't have to wait long for an appointment with doctors. As of now I am on a 2 month check up with rheumatologist , cardiologist, nephrologist, and neurologist. I have 2 doctors in Anniston Al and 2 in Birmingham. I usually have at least 1 appointment a month with these. I also go once a month for a lupus study, (this is the place I get inspected for rashes/blisters every 3 months). Plus Massage Thearpy for joints and muscles. So when all is said and done I am in a doctors office or some facsimile there of every week.
Can totally understand your frustration!!! The "mild" symptoms you have been having are totally life ruining and alarming ,and completely take away any possibility of spontaneously living your life in any normal way.
I would definitely gather together your questions you didn't get time to ask and e mail them to him. Then at least at your next visit he will hopefully start off by addressing them first. It is extra frustrating having so little time when you are having to go private to actually see the guy in the first place. Even private I often get only fifteen minutes depending how busy they are.
So often tests results do not reflect the reality of what every day can bring to you. I am often a lot better on consultation days especially if a long journey and stress is involved.I am sure that it is a flood of my own extra adrenaline helping me to cope that is acting as an antiinflammatory somehow.
They should actually see you the next few days when you can barely crawl out of bed never mind leave the house.
Get busy now on those questions for him, but I wouldn't send them to him too soon so they are fresh in his mind when he next sees you. That will also give you more time to add in other points which will no doubt arise.
All I can do just now is send you bucket loads of sympathy and a big hug across the miles!
Good point about waiting a while before sending, so that I have more time to add to the list.
On top of yesterday's trip, I think today I managed to get a spontaneous leak of CSF fluid from the lumbar puncture I had a year ago. Apparently EDS sufferers have a weakened dura that could cause these leaks. A leak causes low intracranial pressure, hence increased tinnitus, hearing loss, headache, dizziness and orthostatic intolerance.
Just pile it on, I might as well deal with everything in one go. I'll see if I can get referred to a neurosurgeon now.
Excellent idea to check that out with a neurosurgeon. Could well be a possibility . I was looked at for that a couple of years ago after my cervical spine op.
I had a massive headache and water dripping out my nose that seemed a lot worse than my usual rhinitis. In the end it was almost impossible to get a sample of fluid from my nose enough to test it. It did eventually settle down but with you having the lumber picture last year it could be a possibility.
I would have thought he should have been looking for that too!!!
We have to be our own detectives yet again!
Hopefully a neuro surgeon won't be such a long wait. X
I think if you are leaking CSF that needs URGENT attention.
Best wishes
You know that I can totally relate to this horrible feeling of being let down by test results and the feeling of being fobbed off with mild when for you this so-called mild is devastating. I recall reading mild about my small fibre neuropathy and wanting to throttle the neuro who wrote this.
I'm with the others - trust your excellent instincts and explore the EDS/ CSF leakage idea.
Push your GP for neuro referral and once you have one then if I were you I'd email this private guy and tell him what you suspect. Also really stress how devastating this is and just how non mild it feels to you. Mild is fine for stuff that is relatively so. But it should only be used if it's having a mild/ minor impact on the sufferer's life.
Oh PT I have missed your presencenhere. I am so sorry that it is your turn to bang your head on a doctors desk with little result. Do you know, I think if we could get a miracle, instant total cure, us guys could rule the world with one hand whilst baking to feed the hungry with the other whilst phoning round mustering groups to help all those who cant help themselves. We'd sort the world in quick time!
All that energy focused on questions, research, fury, trying to do the tiny bit we can, and the frustration. We could light London!
When I came on asking advice about emailing the consultant, one guru said it would only go straight into your notes and he'd only read it ten seconds before you go through the door. That struck me as true. Instead I wrote a short speech which was the result of honing down all my symptoms and concerns into a succinct package. It took the wind from the docs sails a bit but they had to address this issue first. Just a thought. A guru such as yourself has more experience than me so pardon my telling granny how to suck eggs(I trust you know the expression.)
I am so sorry you are having such a rough patch. I am also sorry that every single one of us seem to have to take a turn carrying this burden. WHY don't docs listen more? I asked this of the lovely-private- GP I saw. Her response? Nothing easier.
Your expression, "short changed" is spot on, as usual. It is so dispiriting to have your research, feelings and suspicions ignored. It hurts.
Loath though I am to add something else to the pot, but your low BP and dizziness and needing salt, could suggest hormone imbalance, like Adrenal insufficiency. Is that anything you have been tested for?
Lots of love to you, guru, for a swift intelligent response to your worries and a quick and easy solution to them all.
Thank you for your lovely words. It was me who said not to send emails in advance because they don't read them. Which is why I didn't do that for the follow up on Wednesday.
But because we didn't get to discuss everything I wanted, I want it on record what was missed. So even if he doesn't want to go through the points I raise,there will be a record that I asked specifically about this and that. No doctor wants to have that without being seen to correct the impression that somehow he/she has been remiss in addressing patients concerns.
But this specialist isn't unwilling, it's just that he focused on stuff that mattered to him, not me and by the time I got to mine, the time was up.
About the adrenal insufficiency, no, I haven't been tested and it is something I would like to but it got lost in the POTS thing and forgot about it, thank you for reminding me.
Ha! Well it goes to show no good advice is wasted!
Im in a soup myself. I was delighted someone diagnosed Fibro, something out of all my symptoms at Manchester, but now I am reading experienced gurus saying it is a label docs use to parcel up our symptoms to shut us up whilst treating them with contempt. Again.
I am exploring all my symptoms and coming up with various conditions they fit, now I have had my fingers prised off the Lupus causes everything box.
I could have Addisons, Thyroid problems, pancreatic problems and with my lack of motility in my oesophagous which could be muscular or nerve damage in origin.
I fought hard to get referred to a Lupus specialist. Nice though it is to be told it is quiet, I feel a fool. How do I get the reluctant GP who cant be bothered, to listen and start any investigations?
Do I break myself getting intelligent/paid for tests and results? Then do I go back to the NHS and say TA DARRR!
I sound like "ILLNESS ANXIETY" is shouting at these docs. Thats the new term for Hydrochondria by the way.
I can not give up. I feel ill. My health is deteriorating. It is not my fault my body is going mad. Where do I get help? Who will listen and investigate these text book conditions?
Like all of us we are tangled in a mesh of different things. I DO NOT WANT TO HAVE DISEASES. I HAVE DISEASES BUT AM ABANDONED BY THE HEALTH SERVICE PROVIDERS.
I am tangled with PIP at the moment too. I have a barium swallow on Wednesday. I dont think it will work because my oesophagus is never empty but I will not eat for a couple of days it may help. Remember I have had no interest in food since February.
My husband continues to support and do everything for me, not once looking askance at yet another symptom or theory. It makes it bearable-ish.
I just dont know. Being a cynic, I reckon we are being pushed towards paying as some great master plan by those who only go private themselves so have no idea of our desparate plight.
I wonder if my local teaching hospital need a practice dummy. They can be challenged to find out everything that is wrong. I am willing to be prodded poked xrayed stuck for blood and anything else, as long as I get either the van with the men in white coats or a brass band on a float so I can blast my local surgery on megaphone that I have been right all along and they STINK at their jobs.
Sorry, guru for the ramble. I shall decide one way or the other.
P.s. Don't believe what others say about Fibro, we each have our own opinions about diagnosis and even medics are conflicted about Fibro. I personally disagree that Fibro is a label used to get rid of patients that don't fall into any boxes. But that's my view. I tend to trust my instincts when it comes to diagnosis. After all, diagnosis is just a label that tells the medic what treatment to give. If my body is screaming at me that it's in pain, then I don't care how it is called as long as I get some relief from symptoms. I know many here share that opinion.
I came across someone the other day who sits every weekday morning on the Fibro action helpline answering calls. She says she has diagnosed CREST but agrees with her added diagnosis of Fibro. I think it would really help if doctors were honest enough to admit that these diagnoses of conditions such as Fibro, IBS and ME or Functional Neurological Disorder actually represent a failure of the medical profession/ NHS to help people who don't fit their overly rigid criteria boxes, rather than a failure in patients to get a grip of our lives?
To me Fibro and ME symptoms can make a lot of sense of mind and body playing havoc on each other in response to trauma - whether this is physical trauma of an actual recognised disease or mental trauma born of life events - or both.
But once we are given a label of these kind of conditions it feels as if our doctors are blaming us while simultaneously washing their hands of any responsibility for our physical or mental welfare? This is why I would fight such a diagnosis were one to be landed on me. That said I've self diagnosed IBS - but not because I'm stressed but because Guardiasis last year gave me a dairy intollerence!
Sorry if I'm repeating myself here but I just get so sickened by all this Doctor God nonsense! They need to wake up and smell the mustard and treat us as intelligent equals and aim for team work.
Vvvv much feeling for you PT: I bet you feel enraged. My heart sinks just reading your post & your responses to each reply.
By the time I'd returned to forum this evening, you'd already received these great replies...there isn't much I can usefully add...our forum friends have said it all.
Thanks so much for keeping us up to date....and please continue to let us know what's happening as you forge your way through to convincing diagnosis, monitoring & treatment.... I'm beginning to realise that timescales like mine (40 years to convincing d, m & t) are unfortunately continuing to be a reality even for proactive, expert patients like you & others here on forum. Am so sorry 🙁
And it is so demoralising, remember that you are right, it is 'they' whom are not keeping up, unintentionally of course, but as you are a blip on their daily radar you have to stay positive. You will be swept up onto the conveyor belt and be monitored , diagnosed , treated and hopefully become well again. Stay strong
Thanks for updating us about your POTS results and CSF fluid leakage. So sorry your health struggles go on and on!. It is heartbreaking when test results don't reflect the severity of symptoms and it doesn't suddenly make them go away either!. If only. I hope the increase in water intake makes some difference and good luck for those further tests. He is certainly thorough and maybe those will show something where you'd least expect it. GOOD LUCK with the neurosurgeon referral too. Keep us posted . Take Care MistyX
I too have POTS and EDS and yes can relate it took a long time to get to the bottom of my symptoms and a diagnosis and yes it is so frustrating but so many doctors just don't seem to understand it or even know it exists.
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Update from appointment 
Neurologist update. SFN?
☢️ headache update- 🤷♀️/Vaccine reaction? 
Updates on tests edited. 
