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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Who diagnosed you?

Messages
30
Hi all, just wondering if you would mind posting what Dr/specialist actually diagnosed you... GP, ME/CFS specialist, rheumatologist etc etc???
I'm currently trying to get a diagnosis, and would be interested to know, who in the "Dr world" does the most when it comes to diagnosing an illness like this?
I've just been referred by my GP (NHS) to a rheumatologist (haven't had the appinment yet) did anyone else find it helpful to see a rheumatologist?
Thanks in advance!
 

Wishful

Senior Member
Messages
5,634
Location
Alberta
My trip to the rheumatologist was a complete waste of time. Despite my asking my doctor to make sure that he asked the rheumatologist if there was anything he could do for me, and that I didn't want to bother if there was no point, he came in, said "Sorry, can't help you", then touched my knee briefly so that he could charge the government for a 'physical examination' or whatever. I'd have filed a complaint if I had any trust in the complaints process.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
It's not the specialty of the doctor that I would look at but the track record and reputation in ME or CFS or FM. Not sure where you are located?

My experience has been that some UK NHS Rheumatologists think that ME=CFS=FM or even CF. In some cases (and this goes for other NHS doctors) they don't have much respect for diagnostic criteria.

Also personally I'd not be looking for any of those as a diagnosis unless there is some specific reason. I'd be looking for someone who was able to rule out diseases and come to the most accurate reason for your symptoms.
 
Messages
56
Hi all, just wondering if you would mind posting what Dr/specialist actually diagnosed you... GP, ME/CFS specialist, rheumatologist etc etc???
I'm currently trying to get a diagnosis, and would be interested to know, who in the "Dr world" does the most when it comes to diagnosing an illness like this?
I've just been referred by my GP (NHS) to a rheumatologist (haven't had the appinment yet) did anyone else find it helpful to see a rheumatologist?
Thanks in advance!
Hi I to am in uk..I have seen rheumatologist several times as gp kept refering me back due to high crp and sed blood markers but no obvious infection. First apt diagnosed with fm and on 2 or 3rd apt said looks like cfs. I had lot of tests and scan also showed other things.
I then paid privately to see a neurologist following a severe 2 week headache with vomiting and had scan..diagnosed functional disorder which is neurologist term for me..now have apt at immunologist for next week and had prior blood test which have picked up something which must be worth them seeing me.
I have had no treatment for this condition despite coming up to 3 years now and thinking of going private to try and get some help as am often bed bound and mostly house bound with increasing severity.
I think the rheumatologist would be worth going to if he will run some tests..i guess it is like a post code lottery..good luck and apologies for the long post.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi all, just wondering if you would mind posting what Dr/specialist actually diagnosed you... GP, ME/CFS specialist, rheumatologist etc etc???
I'm currently trying to get a diagnosis, and would be interested to know, who in the "Dr world" does the most when it comes to diagnosing an illness like this?
I've just been referred by my GP (NHS) to a rheumatologist (haven't had the appinment yet) did anyone else find it helpful to see a rheumatologist?
Thanks in advance!

I was diagnosed with "unknown virus" over and over for a year. Every time I crashed they told me I must of caught another virus cause my glands would swell and I'd run high temp etc but they did not know what. A year of this (8? viruses in a year?? getting sick every time I made efforts to study hard..) and I ended up doing my own research and diagnosing myself with ME/CFS at which time I then took info on this info into my GP and he agreed to the diagnoses.

From there I sought out and got referred to ME/CFS specialists who tested me for a lot more things but also then ended up confirming when those things came back negative.

A ME/CFS specialist can be in ANY FIELD at all, its just a doctor who has a special interest in ME/CFS and sees many with this. and its that what you may need to seek out if you want a ME/CFS diagnoses. Before that thou try to get anything else it could be ruled out.

A rheumatologist is more likely to diagnose FM and many who have ME/CFS get diagnosed with FM with the ME/CFS still not diagnosed. One in every 4 who have FM will actually have or end up also having ME/CFS as these are overlapping illnesses. If you also have FM, the rheumatologist may be helpful at treating that and pain symptoms
 
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Messages
30
It's not the specialty of the doctor that I would look at but the track record and reputation in ME or CFS or FM. Not sure where you are located?

I live just outside London (UK)

My experience has been that some UK NHS Rheumatologists think that ME=CFS=FM or even CF. In some cases (and this goes for other NHS doctors) they don't have much respect for diagnostic criteria.

It seems to me like some people don't think ME is a real illness and some do (which it clearly is) so I suppose it may depend what view the rheumatologist holds on this condition.
 
Messages
30
I was diagnosed with "unknown virus" over and over for a year. Every time I crashed they told me I must of caught another virus cause my glands would swell and I'd run high temp etc but they did not know what. A year of this (8? viruses in a year?? getting sick every time I made efforts to study hard..) and I ended up doing my own research and diagnosing myself with ME/CFS at which time I then took info on this info into my GP and he agreed to the diagnoses.

I have pretty much had to do the same thing "self diagnose" but I need to get it from a professional! I've just changed my GP surgery as my previous one was hopeless, and my new one has sent me to the rheumatologist, it's taken me over three years just to get an appointment with a rheumatologist!!! and although I know ME and FM have overlapping symptoms I definitely don't have FM! And as far as I'm aware FM is more what a rheumatologist deals with! So I just hope it isn't a complete waste of time as I'm pretty much willing to see anybody after running in circles with GP's for the last 3 years!
 
Messages
30
The problem is with being on the NHS you only get to see whoever they refer you to! Is there any way of finding out if there are any ME specialists/ near by? Or at least someone who is willing to admit that it's a real illness and that I have the symptoms for it!
Also why is there so little knowledge/acceptance of this illness when there's millions suffering with it?
I have heard that people under the age of 18 who contract ME should get a diagnosis quicker, I was only 17 when I first got it and now 3+years down the road I'm no closer to a diagnosis, other than being referred to a rheumatologist!!??
Is everybody's local doctors this hopeless or have I just been unlucky?
 
Messages
56
No you are not unlucky re getting a diagnosis...there is so much scepticism re this condition especially in the uk. Even if and when you get a diagnosis there seems to be little treatment if any and all I can suggest is to read lots of info on here from peoples experiences and research and try and get whatever tests done that you can to rule out any other conditions. But from my experience so far the longer it goes on the more body systems get whacked. I am afraid to tell you that you cant rely on the gp etc to be of a great deal of use with this..just try and get what you can in way of tests but be wary of them putting you in the depressed psychological basket to languish.
 

godlovesatrier

Senior Member
Messages
2,488
Location
United Kingdom
My GP, but my neurologist was a bit useless even though he was very kind and polite and did all the right tests. MRI, liver ultrasound, kidney tests, magnesium and b vitamin tests etc. All of which were normal. At the time however I was gradually getting better and almost fully recovered which still upsets me. But after a general anesthetic for an operation I relapsed and I've never really fully recovered from that. Currently in another recovery (remission) phase but this one does not feel like I will recover as I cannot tolerate exercise much at all.

This is 3 years or more post diagnosis for me. Oh Rebarns I had periods of lethargy constantly in my teens and two post viral fatigue diagnoses before I had my 6 months+ protracted fatigue diagnosed as ME. So honestly I think I had it all along but ME was never mentioned. In my case you could say clinical history was paramount in diagnosis.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
I am in the US I have been sick for a long time. I think I had very manageable ME/CFS since a teen. It was not on my radar until I got sick with no other symptoms besides a fever in 2011. I have never been the same. My neurologist diagnosed me, but he also kept looking for other illnesses and helped me get on disability because getting SS benefits for CFS is super hard. I have other coexisting conditions that won my disability case.

My new MD PCP is a DO and I am not sure there are DOs in other parts of the world, she is putting me through the wringer with other testing, she thinks that once we get a diagnosis, sometimes we can have other illnesses and then not have all the other parts of the body looked at.

I hope you do not have ME/CFS but if you do, you are in the right place and certainly welcome here.

There is a list of physicians in a list on the home page of this site.

All the best:tulip:
 
Messages
56
I am in the US I have been sick for a long time. I think I had very manageable ME/CFS since a teen. It was not on my radar until I got sick with no other symptoms besides a fever in 2011. I have never been the same. My neurologist diagnosed me, but he also kept looking for other illnesses and helped me get on disability because getting SS benefits for CFS is super hard. I have other coexisting conditions that won my disability case.

My new MD PCP is a DO and I am not sure there are DOs in other parts of the world, she is putting me through the wringer with other testing, she thinks that once we get a diagnosis, sometimes we can have other illnesses and then not have all the other parts of the body looked at.

I hope you do not have ME/CFS but if you do, you are in the right place and certainly welcome here.

There is a list of physicians in a list on the home page of this site.

All the best:tulip:
Hi..not sure what a DO is..I will have a look to see if there are any physicians near me..thanks for that info...also hoping you are picking up after your recent ordeals from testing..best wishes
 
Messages
30
Hi @jesse's mom
Thanks for the info!
Yes I think it's quite different in the UK as far as doctors etc are concerened as it's all on the NHS and a lot of the NHS local Drs seem to try and get away with doing as little as possible for you, it's sad but just how it is over here!
 
Messages
30
@penny pitst0p
Thanks for the advice!
Yes I thought that must be generally the case, as I've heard so many stories of people struggling to get this condition noticed/diagnosed!

But from my experience so far the longer it goes on the more body systems get whacked

Yes I agree, I've been ill for over 3 years and I'm worse than I've ever been and in the past year have gone very noticeably down hill!
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
I will say that I am finally getting a little better! The pacing I have inforced; the resting before I am tired. The supplements that are suggested over and over again is what I think has helped me the most. My diet of no gluten or sugar for several months and just little things now but not every day is helping too. Low and slow is my motto.

This is not what anyone but my new DO has supported. Every bit of this I have learned by exhaustive research and tons of self treatment. I struggled for years having Drs literally roll their eyes when I mentioned CFS. They still do not recognise the newer and more respectful term ME. I was overjoyed when my new DO tried the word on her tongue and was interested! This is new, just the last 6 months.

I feel so bad for all of you working in your system, but know that our medical insurance is very expensive and not available to many of our population. If I did not have the expensive prescription insurance rider with medicare, I could not afford my migraine medicine! I could not afford my anti seizure meds either. Ours is not a perfect system by any means!

When people cannot afford good medical insurance here they are on Medicaid and the costs are low, but the care is much like what I gather from listening to patients in the UK.

WE can and do get better, not always but many times. There is hope. Baby steps.
All the best!
 

ukxmrv

Senior Member
Messages
4,413
Location
London
The problem is with being on the NHS you only get to see whoever they refer you to! Is there any way of finding out if there are any ME specialists/ near by? Or at least someone who is willing to admit that it's a real illness and that I have the symptoms for it!
Also why is there so little knowledge/acceptance of this illness when there's millions suffering with it?
I have heard that people under the age of 18 who contract ME should get a diagnosis quicker, I was only 17 when I first got it and now 3+years down the road I'm no closer to a diagnosis, other than being referred to a rheumatologist!!??
Is everybody's local doctors this hopeless or have I just been unlucky?

No I don't think you are unlucky but with ME it pays to try and take control of the process as much as you can. Sometimes you have the choice of an almost "benign" neglect or actual harm.

In my area I have the choice between a "CFS" clinic run by a Psychiatrist who uses CBT and GET only OR being sent to a "Pain" clinic that has group meetings where they teach relaxation techniques.

Supposedly on the NHS we have the right to be referred to any clinic in England that treats ME or CFS but where would we go as the list of safe places is being narrowed down each years. Dr Bansal has retired in Surrey and been replaced by a Psych with an interest in eating disorders and one other doctor has mysteriously stepped down from another clinic.

My advice would be to contact your local ME group (the ME association has a list) and see who people there are seeing. Then do some research and try and get a referral to any "safe" clinic you can for a diagnosis.

The last thing I would personally want would be a ME or CFS diagnosis from someone who doesn't know what to test for and rule out, as that would mean potentially being dumped on a scrap heaps for years or more. There are "CFS" clinics where patients are not even given a physical examination let alone any tests.
 
Messages
56
@penny pitst0p
Thanks for the advice!
Yes I thought that must be generally the case, as I've heard so many stories of people struggling to get this condition noticed/diagnosed!



Yes I agree, I've been ill for over 3 years and I'm worse than I've ever been and in the past year have gone very noticeably down hill!
Sorry to hear that..but that is my experience also..i have been mainly bed and housebound since end of november which is the worst pem so far....just trying to get back to my already low level of activity
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
My diagnosis goes way back to the early 90’s, even though symptoms started earlier. I kept going to a GP with cycling flu like symptoms. He ran all kinds of tests which came back normal. He also sent me to an allergist, an ID Specialist and a thoracic/pulmonologist. The only thing found was a then active CMV which the ID doctor (from Harvard) said wasn’t treatable at the time. So, the GP concluded I had a latent virus that manifested symptoms when my stress level reached ‘7.’

I switched GPs and the second one went through all his testing and came up nada. He was an endocrinologist so he rxd prednisone and offered B12 shots, et al - standards at the time. Still no improvement in symptoms. By this time Cheney, et al had public treatment protocols published. He went with some of those and agreed my case was similar to the published literature. So, I just kind of backed into a diagnosis by GPs, the process of eliminating the usual suspects and getting aligned with
the CFS Profile publications at the time. Thank goodness for the power of the pen and publishing - to this day, but especially early on, circa Lake Tahoe era.

BTW, The booklet publication by the old CFIDS Chronical “CFS: The First 20 years” has some still relevant treatment protocols and research info. It’s probably hard to get; it may be available through solvecfs.org (or other successor to CFIDS.org)? It’s worth buying multiple copies and taking to prospective doctors.
 
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Messages
56
No I don't think you are unlucky but with ME it pays to try and take control of the process as much as you can. Sometimes you have the choice of an almost "benign" neglect or actual harm.

In my area I have the choice between a "CFS" clinic run by a Psychiatrist who uses CBT and GET only OR being sent to a "Pain" clinic that has group meetings where they teach relaxation techniques.

Supposedly on the NHS we have the right to be referred to any clinic in England that treats ME or CFS but where would we go as the list of safe places is being narrowed down each years. Dr Bansal has retired in Surrey and been replaced by a Psych with an interest in eating disorders and one other doctor has mysteriously stepped down from another clinic.

My advice would be to contact your local ME group (the ME association has a list) and see who people there are seeing. Then do some research and try and get a referral to any "safe" clinic you can for a diagnosis.

The last thing I would personally want would be a ME or CFS diagnosis from someone who doesn't know what to test for and rule out, as that would mean potentially being dumped on a scrap heaps for years or more. There are "CFS" clinics where patients are not even given a physical examination let alone any tests.
Good ideas here there is a ME northeast i will contact Thankyou