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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Dr Abhijit Chaudhuri UK

Allyb510

Senior Member
Messages
181
Location
Scotland
Ally thanks, you're so nice. I feel a bit better today. I probably have a long break from it all. I don't feel I gained much, maybe lost existing strength.

Dr. Chaudhuri's been good, he is very thorough, unfortunately his diagnosis tools are not quite applicable within the NHS system, event the NHS staff intentions are great.

This is our reality, there is no diagnosis schedule let alone expecting a treatment is a dream.



I'm really glad you're feeling a bit better today Erin :) ! I was thinking, some London hospitals must perform the more unusual investigations recommended by Dr. Chaudhuri. Would there be any way at all that you could make a trip there?
(I travelled to Dundee Hospital to have skin prick tests because there was no allergy clinic in my area. It didn't cost me anything as my health board paid.) I know you will probably have considered all the options already...

Yes, definitely, the struggle to find the doctor is important but only part of the battle. The NHS is well-meaning but not geared up for patients wanting to be proactive about their health. I'm expecting strange looks from my GP when he reads Dr. De Meirleir's letter but I don't care!

If you get to the treatment stage and can tolerate it, you're on to a winner, but it takes so long to get there. I feel for you because I know how awfully difficult thyroid problems are to diagnose and then to treat.
 

erin

Senior Member
Messages
885
@Allyb510, I feel better but I don't feel like traveling at the moment. I don't even know where is this search into my ME leading. I don't have a direction anymore, so I feel like abandoning the search. I'm stuck really.

I'm wondering if you had your GP read the letter from Dr De Merleir? And what's the outcome? You do have a thread about this I guess. I can't seem to find it. I don't want to miss your news.
 

Allyb510

Senior Member
Messages
181
Location
Scotland
UOTE="erin, post: 813557, member: 24043"]@Allyb510, I feel better but I don't feel like traveling at the moment. I don't even know where is this search into my ME leading. I don't have a direction anymore, so I feel like abandoning the search. I'm stuck really.

I'm wondering if you had your GP read the letter from Dr De Merleir? And what's the outcome? You do have a thread about this I guess. I can't seem to find it. I don't want to miss your news.[/QUOTE]

I totally understand that feeling Erin. There's been long periods when I've given up hope of any improvements in my condition. I lost direction too because you need an expert who is strong to give you direction when you're feeling ill and weak. After all the pain I suffered last year, I realised that my health was deteriorating because I was doing nothing. So this is how I came to Phoenix Rising and started seeing KDM. (I have to say that Justy's recent experience with KDM has knocked my confidence a bit, in that regard. Have you read about it in the Treatment section? We'll see what happens when I go back to Belgium.)

Well, I haven't got a letter yet but I'm seeing him in March for the results of all my investigations. I'm going to ask him to write to my GP, explaining his findings. NHS docs tend to view non-NHS labs with suspicion but I won't be putting up with any of that this time. I will expect them to action what he has found. (At the very least they can do repeat testing to confirm.) If no action is taken, I will escalate to my health board.

I'm not an argumentative person but my experience has been that, if you are willing to sit on your sofa every day, exhausted, in pain, and uncomplaining for years, then they will let you do precisely that.

My account of my first visit to KDM is in the Doctors section...I think I called it the bleedin' obvious...First Visit to KDM or something. I'll update again when I receive my test results.

Hang in there Erin!
 

Anna Wood

wood/sheridan
Messages
487
I found this thread really helpful when deciding whether to see Dr C, so thanks everyone. But I have to say I'm really disappointed with my appointment and follow-up letter that I've just received.

There are lots of in-acurracies in it. He says I am likely to be deconditioned (which I agree with) and recommends resistance muscle training exercise and graduated physical activities. I tried to explain that I just feel sooo ill when I do more than I am doing already, but he didn't seem to get it.

He thinks when I wake gasping for breath that is likely to be due to anxiety. I don't feel in the slightest bit anxious, so am unsure if this is very likely.

He has written that I have no cognitive difficulties, despite me telling him that was my worst symptom. He didn't test them at all (though I don't have memory problems, it is more difficulty concentrating, reading using a computer etc for any period of time).

He has recommended a few blood tests and also follow-up for swallowing problems (though he then says they are possibly due to anxiety...).

Ugh
 
Messages
93
Location
Glasgow (UK)
I found this thread really helpful when deciding whether to see Dr C, so thanks everyone. But I have to say I'm really disappointed with my appointment and follow-up letter that I've just received.

There are lots of in-acurracies in it. He says I am likely to be deconditioned (which I agree with) and recommends resistance muscle training exercise and graduated physical activities. I tried to explain that I just feel sooo ill when I do more than I am doing already, but he didn't seem to get it.

He thinks when I wake gasping for breath that is likely to be due to anxiety. I don't feel in the slightest bit anxious, so am unsure if this is very likely.

He has written that I have no cognitive difficulties, despite me telling him that was my worst symptom. He didn't test them at all (though I don't have memory problems, it is more difficulty concentrating, reading using a computer etc for any period of time).

He has recommended a few blood tests and also follow-up for swallowing problems (though he then says they are possibly due to anxiety...).

Ugh

That doesn't sound too promising, I would have expected better from him from the Price and reviews. I was planning on seeing him recently at Nuffield Glasgow. Can you tell me how long your consultation was and what was said? I'm now re considering if it would be worth it?
 

Kati

Patient in training
Messages
5,497
I found this thread really helpful when deciding whether to see Dr C, so thanks everyone. But I have to say I'm really disappointed with my appointment and follow-up letter that I've just received.

There are lots of in-acurracies in it. He says I am likely to be deconditioned (which I agree with) and recommends resistance muscle training exercise and graduated physical activities. I tried to explain that I just feel sooo ill when I do more than I am doing already, but he didn't seem to get it.

He thinks when I wake gasping for breath that is likely to be due to anxiety. I don't feel in the slightest bit anxious, so am unsure if this is very likely.

He has written that I have no cognitive difficulties, despite me telling him that was my worst symptom. He didn't test them at all (though I don't have memory problems, it is more difficulty concentrating, reading using a computer etc for any period of time).

He has recommended a few blood tests and also follow-up for swallowing problems (though he then says they are possibly due to anxiety...).

Ugh
Hi @Anna Wood i wonder whether you had a formal neuro-psych assessement to assess your cognitive capabilities such as concentration, memory, etc? If not, which is what I suspect, then how is dr C accurately assess yor cognitive issues as being fine?

I concur with you, ugh.
 

Anna Wood

wood/sheridan
Messages
487
That doesn't sound too promising, I would have expected better from him from the Price and reviews. I was planning on seeing him recently at Nuffield Glasgow. Can you tell me how long your consultation was and what was said? I'm now re considering if it would be worth it?

It was about 45 minutes I think. Don't necessarily let my experience put you off - some people I know have had good experiences, and one friend got her diagnosis changed to MS, which has been a really helpful for her. I guess just be realistic about what to expect - he isn't going to offer any wonder treatments, but will get other things ruled out, and has more time to do a proper history than a GP does.Hope that helps. I'm in Glasgow too, just let me know if I can help any more

Hi @Anna Wood i wonder whether you had a formal neuro-psych assessement to assess your cognitive capabilities such as concentration, memory, etc? If not, which is what I suspect, then how is dr C accurately assess yor cognitive issues as being fine?.

No, that was really odd - I told him cognitive difficulties were my worse symptom, so I don't understand why he didn't do more on that. I did say I didn't have memory problems, but still.

He has recommended some blood tests which will be useful, and a referral to speech and language for my swallowing issues. So not all bad - just a bit shocked to see 'panic attacks' being the reason for night sweats!
 

Kati

Patient in training
Messages
5,497
No, that was really odd - I told him cognitive difficulties were my worse symptom, so I don't understand why he didn't do more on that. I did say I didn't have memory problems, but still.
Neuro-psych assessements are rather costly and usually are done for disability insurance purpose, at least in the US and in Canada, but it sounds to me like he made a quick judgement without investigating further.

Associating panic attacks with night sweats is rater odd to me.

I hope your swallowing issues will be taken care of, sending best wishes.