GP won't give me a diagnosis of ME. Feeling very low. Don't know what to do now.

Brain and nerves
1

Just back from the GP again, she won't diagnose me with ME using the Oxford Criteria because there was no definite onset that I can identify.  I am left with this horrible condition but no diagnosis, which I need to get financial help with care through social work.  I also need a diagnosis as this is what I have and it's important to me that this is officially acknowledged.  I don't know what to do now.  Any advice on how to get a diagnosis?  I am planning to see another GP.  I am in Scotland and there are no ME specialists here.

I don't think I have any fight left in me, I wish I could put an end to this misery. 

2

Not many call it ME in America either. Just chronic fatigue. But i got disability after waiting 2 years to get a hearing. Ugh. Couple disability docs did put on their records what i told them i had. Mecfs. So that may have helped. Are they at least telling you its chronic fatigue? I mean , basicslly its same thing. Keep trying to find a doc. Go to a infectious disease doc get tested for EBV and HHV6. Im on my computer all day researching stuff. Now i may be prediabetic. Ugh . Dont know if its from the 5 months of antiviral valtrex and zantac or midodrine for POTS ugh. Or just getting old with this illness. Good luck.

3

So sorry you're going through this. There's a couple of things you might try, and perhaps have already tried. First, there's the ME Association in Scotland, which provides support and information. Second, there's the Scottish "Good Practice Statement on ME-CFS," which provides a "Quick Reference Clinical Guide." This Statement is put out by the NHS of Scotland. You can view this statement online. In the "Clinical Evaluation of ME-CFS" section, under "Initial Presentation," it says: "The onset of ME-CFS may be sudden or gradual." So the idea that you can't be diagnosed because there was no definite onset that you can identify is bogus. You could actually print out the statement and show it to your GP. I hope you get a diagnosis soon.

4

Please find another doctor.  There is no question that for some people onset is slow. There is not always an identifiable trigger.  Unless your Doctor has an alternative theory for your symptoms and has put a plan of action in place for you, your really need a second opinion.   Good luck.

5

Tracy--I was thinking of going on Valtrex. Did it help at all? What about the Midodrine for POTS. I think both those meds potentially have severe side-effects.

6

Hi jackie. I didnt feel any difference taking the valtrex. But i only took it for 5 months. I think Dr lerners patients were taking it for at least a year but they were newly diagnosed. And some had the iv kind with antibiotics. But alot had said in testimonies that he saved their lives. I think ive had my retovirus way too long. 27 years. But im thankful that i do get a better day here and there usually depending on good sleep which is rare.

My doctor now, said she would continue me on them if i saw a difference but i really didnt. You have to take zantac with it to help with absorption and i bet intestinal issues as well. So now that ive stopped both, im getting acid worse then i had, ugh!! Always something! So im going to try to wean off of it. Isnt it bad to take forever? It does help with my ibs.

The midodrine gave me the chills at first but not anymore. Then it gave me urgency! So i thought i maybe had a UTI. Did a urine test at docs and it was fine but he thought he saw some sugar! Ugh. Did a gbs prick test and it was fine. Lately ive been getting faint and shakey if i dont eat for a while. Today i just got fasting lab results that my sugar was slightly elevated! If i have diabetes im going to scream! One less thing i need! But isnt there some glucose issues people have with MECFS? Im going to look it up. Sorry this so loong !

7

Is she saying that she thinks this is a life-long condition for you?

​Oxford criteria says "definite onset of symptoms, not life-long."

​It can still be gradual onset. Is it possible that your doctor has misunderstood? I've not heard of people failing to fulfil Oxford criteria in this way before.

​Also, I'd have thought that GPs would tend to use the NICE critieria, not Oxford. This is the NICE criteria:

Healthcare professionals should consider the possibility of CFS/ME if a person has:

    fatigue with all of the following features:

        new or had a specific onset (that is, it is not lifelong)

        persistent and/or recurrent

        unexplained by other conditions

        has resulted in a substantial reduction in activity level

        characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)

and

    one or more of the following symptoms:

        difficulty with sleeping, such as insomnia, hypersomnia, unrefreshing sleep, a disturbed sleep–wake cycle

        muscle and/or joint pain that is multi-site and without evidence of inflammation

        headaches

        painful lymph nodes without pathological enlargement

        sore throat

        cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing

        physical or mental exertion makes symptoms worse

        general malaise or ‘flu-like’ symptoms

        dizziness and/or nausea

        palpitations in the absence of identified cardiac pathology

 

8

GP's shouldn't diagnose this they really are there to do all the tests to exclude other problems so in some ways your GP is correct and by pointing out how they should go by criteria is not really going to help your case (doctors are getting annoying with patients thinking they can diagnose by reading of internet it doesn't work like that)

Now my advice is to ask for referral to Neurology department if they refuse go see another GP and see what they say.

It's hard to give proper advice because we do not know your full work up also in complex cases physical exam is a must.

The onset issue is because people tend to know from when they started to feel that way and it has to be for more then 6 months so really you should know a rough time it started to happen this is a big point for this illness

I would also advise to stay away from Oxford criteria it is what was used for the Pace Trial which did not go so well i had a few patients that ended up in a very bad way because of it

9

Oh, yuck! That's the problem with taking any drug. It can make you better, worse, or have no effect at all. I'm so sensitive to drugs, I often make the decision not to do anything. But in order to get better, sometimes you have to risk getting worse. It's a very difficult situation.

10

Thank you for your reply Jackie,

I have the SGPG printed out and had mentioned it but she said she had to go by the Oxford Criteria.

I am going to try a different GP and see if I get anywhere.   But, yeah, if I come up against the same hurdle I could mention that part specifically, it's a good idea.

11

Hi Catherine,

Thank you for your reply.  I am going to see a different Dr.  I thought this one was terrible in how she went about this.

She offered no explanation as to what might be wrong and she put no plan of action in place.  It was really awful.

12

Hi Fidd,

I don't think she had a clue to be honest.  She said the Oxford Criteria was the one she had to use.  I had mentioned the NICE guidelines.

13

Oh, and thank you for the reply, I appreciate it.

14

Hi miller.jones,

Thank you for the reply.  If a GP doesn't diagnose it then who does?  As I say, I'm in Scotland and there are no ME specialists here.  Would a Neurologist diagnosis it?

I don't know when this started because I've had depression all my life and I don't know if past crashes were depression or this.  I know for sure it is not depression this time as I hadn't been feeling depressed when it started.  But previous times I'm not sure.

I don't think much of the Oxford Criteria at all but that is what the Dr said she must go by.

15

I was diagnosed by an Infectious Disease specialist here in the U.S.  

16

Hi there I really do understand your frustration with this my GP to did not and would not recognise M.E or Chronic Fatigue Syndrome however with persistence I asked her to please refer me to a specialist who DID recognise it.... she found someone in London and referred me .... it took over a year to get this illness recognised and Diagnosed.....can u see another GP I know it’s exhausting but in the end it will pay off ..., hope this helps 

17

Get a new doctor 

18

Yep, I saw 2 GP's at that practice and I am now in the process of changing practise and will see if I can get a diagnosis from a GP there.