Chronic fatigue syndrome misdiagnosis?

New diagnosis and before diagnosis
1

Hi everyone,

Hope I’m posting in the right place. I would like to know if anyone has MS but was previously diagnosed with ME/CFS?

I was diagnosed with ME/CFS two years ago. My problems started with fatigue and bowel symptoms in 2006. I was in and out of the doctors and had no support whatsoever. It took ages to work out what was actually wrong with me. It wasn’t until I was in pain and had severe muscle aches all over and trouble walking that my GP actually seemed to want to do something about it.

When I was diagnosed with ME/CFS I was actually relieved because I finally had a name for what was going on. Now I’m annoyed and worried that I was given an easy label by my GP because they didn’t want to do any further investigations.

My leg pain has worsened over the past month and the last week has been the worst. I’ve been given codeine for the pain but it brings it down from 8/10 to 6/10. An improvement but not good enough.

I’ve previously taken amitriptylline and diazepam. Gained weight and was a zombie on the former; a zombie on the latter :frowning:

The doctors at my practise seem happy to throw pills at me but I want to know what’s going on. MS is a differential for my symptoms and it was never properly investigated. Has anyone experienced this issue? Were you misdiagnosed?

I struggle to walk. I’m in pain and standing still is the worst (I think it’s because I have to stay still and notice the pain more). My legs are the worst but the rest of my body is just as bad. I’m a vet student and for surgery standing up is part of the job. I can’t sit down regularly and take the codeine to survive the day. I walk weird after sitting down for a while anyway. My muscles go spastic and stiff and I hobble along. I struggle with stairs. I even have to sit down in the shower because I just can’t stand sometimes.

I feel like any doctor I see just assumes that whatever is going on with my body is explained by the umbrella term ‘ME/CFS’ and that I just have to deal with it. I’m really concerned with the progression of my pain. I don’t know what to do.

Can anyone offer advice or examples of their own experience?

I’m based in Hertfordshire and have previously seen a specialist in ME/CFS in St Albans (he was useless). I’m currently on anti-depressants (venlafaxine), codeine (when required) and I take a lot of supplements.

Thank you in advance xx

tags: cfs ME myalgic encephalomyelitis

2

Hi there,

I can understand what you kind of me…I was diagnosed with fibromyalgia and mental health issues some time ago, and I because most of my blood results come back normal in the GP’s eyes, I cannot get anybody to take me seriously or investigate further…I am aware that ME/chronic fatigue syndrome and even fibromyalgia and even similiar conditions are a terrible medical condition and it can affect some people profoundly, so obviously I do not want to appear that I am critical of these diagnosis, as I know that they are geniune and debilitating disabilities, but I do think at the same time some GP’s and even doctors are very easy at throwing out medical conditions to people when they don’t always know what is going off or they cannot be bothered to look into the person’s symptons…this is sad, because people like yourself and even myself are facing life long issues with symptons that are unbearable to live with and causing great stress every day…

The only thing I could possible advise you to do is:

  1. Go to a GP, especially an understanding and thorough gp…keep trying different gp’s until one does listen to you.
  2. Ask for a second opinion or a review: some doctors or specialist are abit difficult with this, but some are good with this matter.
  3. In the review, ask for a thorough in detail blood test, which test for conditions like under or over active thyroid issues, vitamin defiencies, anemia, cealiac disease, hormonal problems like menopause and even testosterone, ANA blood test which tests for lupus and sometimes other auto immune disorders like arthritis, rheamatoid factor blood test, ESR blood test which tests for immflammation in the blood, creatine, and liver/kidney function. If you haven’t already had blood tests, I recommend to get a detailed blood test so you have a reasonable idea if there is anything going off chemically/physically, but some gp’s will not refer you to a specialist until blood test checks are done.
  4. If you are a nervous person when going to a gp, write a letter and even list all of the symptons you have and when they started, and even write any family medical history that you have - this will give them a more detailed insight into what’s what, and where to go next.
  5. Keep searching for answers, and don’t be frightened to say that you want a full explanation on what’s causing your issues…the trouble is that once you get diagnosed with one condition like ME, fibro, depression, etc…the doctors tend to blame everyone on that diagnosed…alot of conditions can mimic each other or sometime overlap…you know your own body, you know when it time to say, “ok, it isn’t right or normal what I am feeling.”
  6. Research into your existing medical condition and learn what are the current symptons of that condition and how gp’s diagnose it…I know from my research of ME that many people think that this condition is just about feeling tired, but it’s so much more then that…It’s like fibromyalgia, for example, some people think it’s when you just have pain, but there are other symptons that we have…
  7. Unfortunately, alot of gp’s tend to say unless you are having something really wierd or severally affecting your daily living, they don’t sadly take much notice…this is sad, but true…Not all doctors are like this, but I know that when I gone to some gp’s or even specialist, they have this attitude that unless you are having an unique sympton to that particular condition, and it so extreme, then they don’t take much noticed…and because ME and some other conditions are very similiar to MS, some gp’s and even specialist keep passing the problem or ignoring it…so sadly many people like yourself go unnoticed…

Hope you get the answers you need, and I do sincerely understand what you going through…All the best.

xxxxx from sjc2013

3

Hya, yes I was.

Briefly, I had been experiencing fatigue for some time. Kept thinking I was coming down with flu but never actually got it. Would get areas of numbness, pins and needles, vertigo, aches and pains.

The sh^t hit the fan on New Year’s Day 06 when I got shingles over my face and head. In retrospect I think I got them because I had been pushing myself through fatigue for so long.

Couldn’t get my strength back. GP eventually sent me to ME specialist… Dr Janice Main at St. Charles Hospital, London. She dx me with ME/CFS but sent me for a ‘routine’ brain MRI.

Results came back as showing ‘bright spots’. I then eventually had a lumbar puncture and was dx with MS. Some time later dx with PPMS.

So from Jan 06 it took until April 08 for me to get the MS dx (everything above took forever).

The only way you can begin to find out if it’s MS is to have a brain MRI… everything starts from there. Suggest you ask your GP to refer. If they won’t, change GP. Or you could try seeing the ME specialist again & asking for a referral for MRI.

As last resort you could look into going private if at all possible (at least for MRI & results).

Nobody on here can tell you if you have MS or not, and ME symptoms can be very similar and as deblitating. As I say, the brain MRI is the first step. If they see lesions on it, it doesn’t usually give you an automatic dx of MS, but it’s the first bit of evidence that might lead to a dx.

Really I would advise you to try and get a sympathetic and supportive GP. Maybe make contact with an ME/CFS group in your area and see if they know of a GP who is prepared to make further referrals.

Hope this helps. I know how frustrating it can be… hang on in there.

Pat x

1 Like
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Wow I’m just reading this first message. It’s a case of déjà vu! I started out with coeliac disease back in 2006. Which to be fair had more than likely been going on for years before. My gp always said it was IBS. Anyway eventually I was told I had CFS/ME two years ago. Then it was underactive thyroid. My symptoms have got worse not better. Then reading about the leg pain etc. I can totally sympathise with you. I’ve seen a ‘specialist’ for the CFS. Waste of time! I’m on all the medication you have mentioned and your right in what you say. However three weeks ago I went for a routine eye test after suffering from horrendous headaches. ( I did put this down to the CFS) they found suspected optic neuritis and was sent for an MRI last week. I am awaiting the results whenever they may come! Back to the gp issue though. I have personally found that yes once you are branded with an ‘illness’ then it’s very easy for them to blame everything on it. Which is why for the last year I have not been for the pain in my legs or the headaches! You sort of get the feeling that you are a hypochondriac. That’s draining in its self. I hope reading that someone else is going through what you are finds you some comfort. X

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I have a ‘probable’ me/cfs dx after mris came back clear. I had been given a possible ms dx and referral to ms nurse while neuro waited for all the test results back. She basically dismissed me when the mRIs came back clear though she did say she would happily seee again if anything changed. The me/cfs clinic tolde not to shut the door on the ms dx as I have so many neurological symptoms. I’m on gabapentin amitriptyline and solifenacin that was 2 years ago and still struggling but managing to juggle work and family. I’m in herts too by the way, hope you get more answers soon x

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Hi, I’m in similar situation than you but a bit further down the line. I was diagnosed with M.E./CFS about 13 years ago. As I’m sure you know, the diagnoses process for that is not totally satisfactory, and leaves you with doubts. I spent a couple of years looking for answers, without any help, before reluctantly just accepting it.

Firstly, don’t do that, just accept the M.E./CFS diagnoses. It’s an absolute last resort, when you’ve exhausted all other avenues. It’s basically become just a dustbin diagnoses. An easy way to get rid of a difficult patient, and you’re then condemned to walk the Earth with this illness that half the world doesn’t even believe in.

You ideally need to escape the clutches of a GP, and get to see a neurologist perhaps, and look into other possible causes. You need to change the relationship with your doctor, and try and take control if at all possible. They’ll never admit it, but if you were to mention half the alternatives to M.E./CFS you might have, they probably wouldn’t even have heard of them.

What changed for me was having a seizure last year, and that led to me getting a specialist appointment for a neurologist for epilepsy. I’ve had my MRI scan which picked some “T2 hyperintensities bi-frontally” (whatever the hell that means!) and an EEG which I just had another one of, a longer, sleep deprived one, as they wanted to look at some non-specific changes.

In my case, all this has made me re-evaluate everything, and look back over the course of my illness. I thought I might have narcolepsy at first, due to the persistent sleep problems - sleep paralysis and hypnagogic hallucinations. And I apparently kick out a lot when I’m asleep. The seizure and those things could possibly be explained by MS though. And when I look back, the aching legs has been one of the most consistent symptoms.

I may end up back where I started with M.E./CFS (with a touch of epilepsy), and you may also, but I believe you should try your best to get a more definitive diagnosis.

You may, like me, need something to happen, or it may take a turn for the worse for you to get it more thoroughly investigated. There is, sadly, a whole group of illness that are very difficult to diagnosis unless you have a “smoking gun” symptom.

Best of luck!

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I’ve never been diagnosed with ME or CFS, but I thought I would throw my twopenneth in anyway!

You need to insist on a referral to a neurologist. Not only is ME a recognised neurological condition (and therefore should ideally be diagnosed by a neurologist, not a GP), there are plenty of alternative conditions that could explain your symptoms, some of which are treatable if under the care of a neuro. Does your GP really want to risk having got it wrong, without you ever even having had an MRI?

If your GP won’t oblige, then you need to see a new GP; either one at the same practice or at a new practice entirely.

Most GPs know squat about neurology. Time to see an expert.

Karen x

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Yes, I have, and I agree completely with Karen.

I became unwell in 2003 and was initially diagnosed with depression (which was true for about 6 months). I was very fatigued, clumsy, pain behind eyes (with light sensitivity - I now know it was retrobulbar optic neuritis), reacted very badly to exercise and like Pat, kept getting flu-like symptoms. I then started getting problems with standing or remaining vertical for any length of time (postural hypotension). My GP sent me for several chest xrays and blood tests over the years but put it all down to depression/anxiety. I was regularly taking time off work and my employers were not impressed…

In 2008 and desperate to get some answers, I paid to see a psychologist who diagnosed me with ‘masking depression’ (where you don’t feel depressed and feel physical symptoms). When I went to see the therapist he’d referred me to, she said that she was sorry but that she thought I’d got ME/CFS and I wasn’t going to get better. Then a mad rush to see another psychiatrist (all I could find at the time) and I was diagnosed and accepted redundancy a week later.

I did ask my GP if I could have MS as I was getting steadily worse (walking, balance & continence issues, numb fingers) but he shook his head and smiled and said it was my ME. Eventually my Mum went with me (she has MS) and demanded that her refer me to a neurologist and I was diagnosed last year.

If I’d known at the time that some neurologists will see you privately without at GPs referral, I’d have gone years ago…

I’m not saying that you have MS, but there is a big overlap of symptoms with ME and other conditions and it would be a terrible shame if you have something that could potentially be treated or helped with the right medication.

Sorry to go on, guess I just needed to get if off my chest!

Mags xx

1 Like
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Hiya I am in the same boat and the cfs specialist actually said to me if i diagnose you fully with cfs the gps will label Everything as down to cfs . He said atypical cfs but wanted me looked at further as I am having bad spasms which i can only try and control with nortriptyline. Long story short i didn’t get a second opinion the hospital refused as i had already been seen once !! I’ve gone private and neurologist has refered me back to see her at the nhs clinic to do more blood tests and to see a movement specialist ? This is at the same nhs hospital its crazy !! My neuro symptoms have got worse but it’s scary to think how many people are brushed away. Just persist it is worth it tho exhausting i know and to feel like you are going mad. Let us know how you go on xx

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Thank you so much for the responses, it feels good know that I’m not alone.

I had an appointment with a GP this morning and it went really well. When I came out of the practice I cried with relief. It’s so nice to have someone listen to me and be on my side.

The doc listened, asked about my symptoms and new developments and then had me stand and point to painful areas. Then I got on the bed and he had my lift and bend my legs etc and test for tender areas.

He asked if I felt as though it was nerve over or uder stimulation I was experiencing - I said definitely over stimulation. He agreed. He wanted to give me gabapentin initially for the neuropathic pain but decided on baclofen. I go back in two weeks for a check up. The dose can be increased but he said that he would consider referral (which I asked for) because it definitely sounds neurological and could need further investigation. Yippee!!!

The last week has been awful. Last Thursday I couldn’t use my left leg, it was useless. I missed two days of study (I’m a vet student in 4th year and I’m currently on rotations in the small animal referral hospital) and then had the weekend to try and get better. This week my legs have been aching, left side more so. I’ve also have pain in my shoulders and my diaphragm. I have trouble standing up during surgeries and want to cry. I bent down to tend to a dog in a kennel yesterday and the pain was unbelievable. When I sit down for a while my legs go to sleep and when I stand up it hurts and takes a while to go away.

I just don’t understand what’s happening with my body.

The doc thinks that this could be part of ME, but he said that he beleives it’s more likely to be something separate altogether. So I have two conditions, great :frowning:

At least I’m finally getting sorted. The thought of not being able to continue on my course is unbearable.

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Glad to hear you’ve had some progress. I hope the baclofen helps.

Have you spoken to your department about getting some extra support while you are going through all this? You don’t need a diagnosis to make use of whatever services they have in place for disabled students.

Karen x

12

Hello there everyone,

I am a retired diagnostic radiographer and I was diagnosed with “CFS/ME” back in 1996.

During 2004 I changed my GP and my new GP just happened to know of a friend who had an auto-immune disease called Behcet’s disease.

During 2008 after a massive battle trying to find a doctor who knew enough, I was formally rediagnosed as having Behcet’s disease so in total my misdiagnosis lasted for 12 years.

I am very interested in hearing from anyone who suffered a clinical misdiagnosis of “CFS/ME” as I am now working on a project to raise awareness of how casually “CFS/ME” can be diagnosed by any doctor with a medical degree.

The simple fact is that a doctor may hold a medical degree but a doctor such as a GP or a general specialist will not have the relevant experience or super-qualifications needed to identfiy rare diseases such as Behcet’s disease, Ehlers Danlos Syndrome, Famillial Meditteranean Fever or Multiple Slcerosis amongst other conditions including Pernicious Anaemia and Coeliac disease.

The diagnosis of Chronic Fatigue Syndrome was introduced to the NHS in the late 1980’s.

I am discovering that people have lived for decades with a misdiagnosis of CFS or ME until some event happens that causes doctors to re-evalute that patient.

One of the issues I faced was the edict from both ME charities supported by CFS/ME specialist psychiatrists that once a diagnosis of CFS/ME is made - only minimal investigations are needed.

My MP is very interested in looking at this matter and right now I am putting together a list of anonymous statements from people wanting to speak out about their misdiagnosis that could have lead to clinical abuse from doctors forming the wrong assumptions about their ill health.

My MP is going to send these statements to Norman Lamb MP who is presently MInister of State at the Department of Health.

You can read a couple of my articles on my website…

http://www.meactionuk.org.uk/Some-Inconvenient-Truths-120513.htm

http://www.meactionuk.org.uk/The-Achilles-Heel.htm

In terms of symptoms, rare diseases such as MS, Behcet’s disease, Ehlers Danlos Syndrome and Famillial Meditteranean Fever (amongst others) all share a similar set of “invisible” symptoms without necessarily displaying many visible signs.

Those similar symptoms are all symptoms suffered by people presently diagnosed as having CFS/ME.

The profession of liaison psychiatry are presently claiming that this group of common symptoms are “medically unexplained physical symptoms”.

From here “CFS/ME” is being defined by these psychiatrists as amounting to a functional mental illness.

Needless to say, these psychiatrists do not have specialist knowledge of the rare diseases cited in this posting.

Professor Sir Simon Wessely - the chief psychiatrist invoved in “CFS/ME” has told me in writing that he cannot say wheter or not he has ever seen a case of Behcet’s disease pass through his out-patient clinic.

Back in 2004 the Behcet’s Syndrome Society told me that “CFS/ME” was “the most common misdiagnosis of their membership.”

My intention is to get to the heart of this matter because it just isn’t right.

Doctors suffer no consequences from giving a clinical misdiagnosis unless they opinion is fatal and the doctor ends up in court.

However, a clinical misdiagnosis can still be devastating for the untreated victim and their families who have to endure years of unnecessary suffering.

Anyone wishing to help can e.mail me at…[Edited]

Many thanks,

Stephen.

13

Hello there,

Apologies for putting my e.mail address in the previous message.

I didn’t realise that this was not allowed.

My personal website http://www.meactionuk.org.uk has an e.mail contact button on the home page so that people can get in touch if they want to.

Thanks,

Stephen.

14

Hi all, i would like to invite you to my Facebook group, this group is made in order to share different missed diagnosis experiences so more people will have knowledge about this situations and maybe in the future we can reduce this phenomenon.