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POTS DOCTORS UK

Discussion in 'ME/CFS Doctors' started by EnduringAngel, May 31, 2013.

  1. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    I got diagnosed in 2010 by prof julia newton, but the air flight there made me soo ill, have never recovered to that level. Was too sick to go back and they wouldn't post midodrine, so had to transfer my care to london prof matthias (as I thought he was the only other POTS dr in the country, clearly I was wrong).

    3 years later and have only just been sent prescription!! it took a year before they took me in for tests, then bought me back for one more 6 months later. Then 7 months later finally had phone consult!!

    I have never seen prof matthias, but his team were horrible :(
    the way they treated me because of the ME was so bad. And the things they said so ignorant!

    Does anyone in the UK know of any good POTS drs down south? ones who would be ME friendly or at least open to helping with more diagnosis.

    Am desperate for more help and so severely ill. :(

    A x
     
  2. Sasha

    Sasha Fine, thank you

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    Sorry to hear you're having such problems with this.

    I went to my GP to try to get a diagnosis of OI, having done the 'poor man's tilt test' at home. I sent him a review paper on OI, including how to diagnose it (including the poor man's tilt test) and we repeated the test in his office. I fit the criteria so he reckoned I had OI and sent me off to a cardiologist who de-diagnosed me. My GP and I weren't convinced by this and he was prepared to prescribe me midrodine off his own bat. We didn't get that far because I was pursuing other things but my point is that your GP, given that you've already got the diagnosis and a prescription, may be able to carry on with the treatment without a specialist.

    I think that OI is not uncommon in MS so any GP with MS patients has probably got some experience with it. If you're not happy with your GP's approach to this, it might be worth contacting the local MS group and asking if they can recommend another local GP who is familiar with it that you might transfer to.
     
    Valentijn likes this.
  3. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    I have been on ivabradine for years, and now they want to add midodrine to it, and get my GP to monitor me.
    But the problem is they have told my already skeptical and scathing GP that the diagnoses of EDS, POTS and gatro, explain all of my symptoms, and there is no point in doing any more tests.
    But I know and we know, that with ME this isn't the case.

    They told me ME and fibro don't exist!
    They told me they could help me in rehab but I would need to choose to engage! I know much of what they said is due to their ignorant ME beliefs.
    But the probs is I have severe ME. am housebound/bedbound and know that more is going on with my body.
    I know I need an MRI and to see an endo. But no way will my GP let me now.
    So I hoped that by changing POTS Drs I could at least maybe convince them to refer me to specialists.
    As My GP wont refer me to anyone else.

    I do appreciate your reply though. Am not sure though, as don't have MS and MS and ME patients get treated so very differently under NHS. So even if I got one who is understanding about MS they may still treat me as an ME patient. eg all in my head. My GP just comes around offers more anti depressants and tells me to get out more!!!

    I had to do my own research to get the EDS and POTS etc diagnosed and hoped that now she'd treat me better ie believe me. But it hasn't changed a thing.

    I know there are other POTS drs in the UK, but really wanted to hear first hand what ME people thought of them, if that makes sense.

    Sadly I have been unable to find any other ME sufferers in my area who I could ask about GPs.

    A x
     
  4. taniaaust1

    taniaaust1

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    Shocking. I hope you manage to get some good treatment. Im in much of the same boat thou in my case Im in Australia I went a very long time with extremely severe POTS (I went throu long periods were I couldnt even stand for less then 1 min) and couldnt find any doctor at all who knew of POTS (and none were willing to research it).

    I now have a doctor who knows about POTS and recommends basic POTS treatment (fluid loading, medical compression stockings, florinef, clonidine) but thou this treatment does help a lot, it is nowhere near enough, Im not even to the point where I cant even leave my house alone due to my collapses (some of them have been unconscious ones). I often collapse one or even sometimes twice a fortnight in public when taken out shopping (it takes two support workers to take me shopping due to this).. I really need saline IVs but my doctor dont know anything about treating POTS like that and taking info to him on that hasnt helped. Its been 5-6? years since I first started trying to get my POTS treated and only found a doctor who help a bit in the past 12mths or so

    Best luck

    ps. Have you tried the right pressure medical compression stockings? They should be "part" of POTS treatment. They help me by about 10-15% but when one has severe POTS even that amount of improvement can be worth it.
     
  5. Esther12

    Esther12 Senior Member

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    Is it not possible that the EDS and POTS could explain all your symptoms? It seems that both can lead to really variable levels of disability, with some people being very severely disabled just from this?

    That's not to say that the doctors are right, and there does seem to be a tendency for specialists to see things through their own often distorted lenses... but there is a lot of dodginess around ME, and I can understand some wariness from doctors dealing with conditions that lead to similar symptoms.

    Really sorry to hear that you've not been able to get more help with these conditions, and that you've been treated badly. Have you tried any EDS support groups/forums for advice on GPs? It sounds like it would be worth you trying to get a better one. Best of luck with it.
     
    SanDiego#1 likes this.
  6. SanDiego#1

    SanDiego#1 SanDiego#1

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    You may think of consulting with a good Neurologist. They seem to be the ones on the forefront with MS and OI.
    It could also be Diabetes Insipidus. But try getting a diag for that is like having Polio diag years ago. A good Neurologist -if you can get a referral from one of his patients may be a good start.
    I am sorry you are having such a miserable time. I think POTS is always part of ME and CFIDS, however may not be the main cause of your symptoms.

    Please keep everyone informed as to how you are doing.

    San Diego #1
     
  7. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    I am so sorry to hear ill you are. I did ask the NHS POTS nurse about IVs and she said they didn't believe they were helpful, which I think is rubbish and just NHS code for we won't fund it!

    I have some stockings on order so will wait and see what happens. :)

    Do you find salt helps?
     
  8. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    Hiya well that is their view but its not mine. As I also get so many symptoms of ME, painful glands, lymph nodes, problems with thyroid, adrenals and sleep. EBV problems.
    Dr Hyde says a sub group of patients get both EDS and ME and I think I'm one of those, as I also have positive ANA and HLB27 positive which he says he also find a lot of.

    I used to be under dr Julia Newton but got too sick to fly back there, it's a long way from south England.
    Thank you so much for your kind comments people and San Diego 1.

    I did see a neurologist and thought he'd be helpful... He was not, but I really do want to see one as I get many neurological symptoms.
    I do have problems with blood sugar levels (low) so will go and google that condition now. :)

    A x
     
  9. SanDiego#1

    SanDiego#1 SanDiego#1

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    EANgel-
    Just read article on Vascular Dementia (brain fog). Also how common it is. with all the symptoms of POTS.
    Actually my Chiropractor has helped me with the dizziness. I do wear the Compression hose. Still say there are alot of Neuro Dr. that may could treat you. It could be a Vascular issue where you are not getting enough blood to the brain. I also lay down with my feet on pillows high- for 20-30 minutes. Are you sure you don't have Cardio problems also??

    Hope you get better.

    San Diego
     
  10. SanDiego#1

    SanDiego#1 SanDiego#1

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    Angel- I have a real concern that you are mixing too many meds. Do all the Dr know what you are taking together? Some of these can be dangerous together. Paricularly the Effexor and Hydrocortisone?

    Just concerned!!!!

    San Diego
     
  11. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    Thanks so much for the advice, yes I do tell them all what I'm taking, but I often wonder how much notice they take.
    The UK drs are so ignorant of ME that I'm left trying to play at being my own drs but its hard when my brain is so confused I can't read much as cant take it in.

    They never told me the two were dangerous together.
    But I stopped the velafaxine a few years before I started the hydrocortisone.

    Does anyone know if midodrine and Ldn can be taken together, as no one I have asked seems to know.
     
  12. taniaaust1

    taniaaust1

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    In my case thou I do take a lot of salt, it isnt helpful.. but if I take Florinef (I still take a lot of salt then).. it is helpful. Florinef has helped me to a greater amount then anything.. probably doubled what I can do. I can also get by on my feet for short amount of times by drinking a crazy unhealthy amount of water (if Im drinking constantly, drink bottle in hand) unfortunately one cant do that too long due to it messes up the electrolites. (I start vomiting once I get to the 5 Litre (20 cups) mark).
     
  13. Shell

    Shell Senior Member

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    EnduringAngel I am so sorry that you are being treated so appallingly.
    I see Prof Gammage at the Queen Elizabeth Birmingham. He does believe in ME and FMS. He dx IST and promises to help me get on top of things.
    I'm on Ivabradine (among other stuff)
    My guess is getting to Brum for you would be truly difficult, and I am quite sure the NHS wouldn't pay for you to see a doc out of your area (I've tried that and even my good GP practice refused). However if you can see him, I recommend him.
    :hug:
     
  14. anniekim

    anniekim Senior Member

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    Shell, may I ask what is IST? Thanks
     
  15. Shell

    Shell Senior Member

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    Inappropriate sinus tachycadia.
    Some researchers think IST is a stand alone tacky in dysautonomia but others think it's a flavour of POTS (postural orthostatic tachycadia syndrome)
    I tend to think the latter lot might be right.
     

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