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Looking for private ME specialist?

Posted , 10 users are following.

ellie77378
ellie77378

Hi all!

Had my follow up appointment today after my blood test, everything fine (of course) and my GP said she would refer me to an ME specialist! The wait for NHS is quite long so I said I would go private.

I just received a phonecall today to say they don't have a private one they can offer me so I need to find my own, and I have no idea what I'm looking for!

I'm in Lancashire in the North West of England, just saying on the off chance if anyone is in the same area!

Nonetheless, I don't know what I'm looking for sad searching 'ME specialist lancashire' hasn't brought up much at all, just say, osteopathy clinics... but I need a diagnosis!

If anyone could let me know what I need to be looking for I would be SO greatful!

Sending happiness and light to you all smile

Ellie

0 likes, 32 replies

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  • end
    end ellie77378

    Posted

    Hi Ellie,

    It's alot to cope with when suffering.

    I haven't read your symptoms (not scooped around this site much so far).

    Nhs CFS/ME clinics work to a specific criteria (more reading if you can 😐). Due to budgets they stay within their criteria.

    I'd be a little wary of anyone willing to diagnose just on bloods , heart rate and walking test. We all suffer differently to degrees within CFS/ME but those things certainly wouldn't cover what I experience, but I don't want to sound negative and you must do what you feel right for you.

    The last thing you need is a misdiagnosis so illiminations of other possible medical stuff is so important.

    Remember there is no cureent cure though, but help to cope, pace etc.. By the time I'd seen a specialist I had self taught coping strategies (help a little but not enough).

    Feel free to ask any questions hun. I'm four and half years down the line and know my head was full of quetins.

    x

  • ellie77378
    ellie77378

    Posted

    Thanks guys!

    It's a lot to get my head round. The clinic did also send me a lengthy questionnaire with lifestyle questions covering a wide range of subjects!

    I think I might just call my GP on Monday and tell them I need help because I don't know what I'm looking for sad I'm annoyed they didn't help me with a referral!

    I'm feeling guilty about being off work too sad I just want to know what's going on asap but it's so difficult!

  • ellie77378
    ellie77378

    Posted

    I was worried about a diagnosis from them too, like if it's not an 'official' one if you understand what I mean!

    I've had a really bad foggy day I think I'll just rest now and take it back up tomorrow. If I'm paying to go private then I want to see the right person! smile

    • wknight
      wknight ellie77378

      Posted

      As others have said, its important to make sure that you have all the tests done on the NHS as tests in the private hospital can be mega expensive.

      You may need to find another GP in your practise. Don't be afraid to approach the practise manager and say you have a problem in getting a referral and ask if there is a GP who has a special interest in this area.

    • ellie77378
      ellie77378 wknight

      Posted

      Thanks for that advise I think I will have to! Oh, why must this business be so confusing -.-

      I'm going to ring minerva in Preston on Jinnys advise (up there ^^) in fact I may email.

      I'm struggling to have telephone conversations lately with my concentration. I forget what I'm saying/was going to say! At least when I'm emailing I can take my time and make sure I get in everything I need to say smile

    • jinny23
      jinny23 ellie77378

      Posted

      Hi Again Ellie,

      Try not to get stressed about it all as that won't do you any favours as you know.

      I remember emailing The Minerva Centre in Preston and asking for advice. They were so helpful. They said that there was quite a lengthy form that my GP had to complete, not me! They said they would email it to my GP and I was to to advise my GP of its arrival and completion as a matter of urgency. I think I emailed my GP too.

      I also remember them telling me there was a long waiting list but that didn't put me off.

      I also remember The Specialist saying that in some ways the wait was important to find out what category of ME I fell into because they only worked with those who could actually attend clinic so if you were bedridden, the support programme was not suitable.

      Everyone I have met has been so good to work with.

      If I can help you with anything please ask.

      My daily diary is spot on but it's been one heck of a journey. I didn't realise how bad my routines were until ME came along!!

      Jinny x

  • knackered.com
    knackered.com ellie77378

    Posted

    Hi Ellie,

    Not sure if you're still looking, but there is the 'North West Fatigue Clinic' in Preston. £125 for a one and a half hour assessment and at the end of it you will find out if you have Cfs/me. They also do treatment/management plans after the initial assessment. Google them and their website will come up. I'm due to go for an assessment next so I can't advise as to what they are like, but I have spoken to them a couple of times over the phone and they seem very friendly and helpful.

    Hope you get sorted x

    • knackered.com
      knackered.com

      Posted

      Sorry Ellie, I forgot to mention that you have to have had a list of blood tests completed with normal results for the clinic to be able to carry out the assessment and offer a diagnosis. There is about 13 tests and they are what are recommended by NICE. Don't let your GP fob you off as whether you went NHS or private the same tests need to have been done. I think I was going to say something else but it's gone now lol. It may come back to me.

      Take care x

    • knackered.com
      knackered.com

      Posted

      Oh remembered now 😄 when I asked my GP if he would uphold the diagnosis he said yes as long as they were registered, which they are. They are specialist OTs. Just having to battle with my GP to carry out some of the blood tests as I haven't had them all yet.

      Good luck x

    • ellie77378
      ellie77378 knackered.com

      Posted

      I have an apptmt with them on the 24th!

      Not sure whether to go with them or see Dr Tarek Gaber but I'm discussing it with my GP tomorrow smile

      I will mention the tests to my GP, but you're right they are really friendly and explained a lot to me.

      Let me know how you get on! X

    • knackered.com
      knackered.com ellie77378

      Posted

      That's grt. I'm supposed to be goin the day after u. If I can get the tests done in time. Some GPs are just plain crap. I got told the tests were specialist, there's no treatment for Cfs/me and it has to be caused by a serious infection/ upper respiratory tract. Wrong on all counts 😯 shockinging really.

      Good luck tomorrow x

    • wknight
      wknight ellie77378

      Posted

      If you are paying then go see the consultant first. He is THE EXPERT. His diagnosed will be 100% recognised by the DWP because he is an expert in this field and will carry huge wait. Unless the people at the clinic are on the GMC register (that means they are doctors) their diagnosis won't carry any weight.

      I think you will find the folks at the clinic really helpful once the consultant gives you a confirmed diagnosis

       

  • jinny23
    jinny23 ellie77378

    Posted

    Morning Ellie,

    I was reading through the Mr Tarek's (Consultant) letter that came through the post after my assessment at the Minerva Centre, Preston. It was such a well thought out letter; such a compassionate man. It reminded me of my concerns at the time.

    I wanted to let you know that the initial assessment is at the Minerva Centre but after that they do their utmost to find somewhere near to home for your follow up programme; not for you to think that you have to travel to Preston alays.

    Also, at the time, I remember thinking about how long it would be before I was seen by the Consultant as I was anxious to move forward! On reflection, I realise that the waiting time was irrelevant hence you are wasting valuable energy if you fret about it. Why ? because if you do have CFS/ME, you will soon realise that it is important to go through the early stages of the condition before any Consultant can way up the journey you take and any deductions. I'm guessing because of the range of ME sufferers: Mild to severe.

    Interestingly, when you are further down the road, the condition dictates your life so fretting about things that used to have significance in your life is so energy zapping !

    On a very positive note, I am beginning to take take control of my condition, not without hard work and a determined approach but worth it...

    I do hope that you do not have CFS/ME but if you do, remember there are many out there who are now recovered and living normal lives again so whilst there is no cure, you can come though it.

    It has changed me considerably; I guess when you go through challenging times in your life, you do find out what your strengths and weakness' are.

    Look forward to hearing how you are getting along ??

    Jinny

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