Diagnosed today: feeling peculiar

[Jaxxi]

I have just returned from the Birmingham CoE having got my diagnosis. I have been unwell on and off since childhood with Behcets-type symptoms, but it has taken until now to put all the pieces together. I am 56.

I was diagnosed with Chronic Fatigue Syndrome in 2000, although I was not confident it was correct as ulcers, spots, rashes and bruises didn't seem to fit. So, whilst I am relieved that we finally know what is up with me after all this time, I also feel a lot of anger and some sorrow for the young woman I once was, who was treated as mentally ill because she made such a big deal about ulcers, zits, aches and pains, headaches, constant diarrhoea and feeling tired all the time.

I have to say, though, that the treatment I had in Birmingham today was beyond excellent. What a great bunch of people, who seemed determined to make me go home feeling better than when I went in, whatever the outcome. It is so reassuring - not just for me but also for my wonderful husband, who has had to put up with my 'mystery illness' for 15 years - to feel that at last I am in good hands.

[Herbiv4]

Hello there Jaxxi, I'm really sorry to read of you long history of being messed around by doctors and the NHS.

I was misdiagnosed with Chronic Fatigue Syndrome for 12 years and before this I was an NHS diagnostic radiographer.

I am now working on a misdiagnosis project focused on the misdiagnosis of CFS that turn out to Behcet's disease or other rare diseases such as Ehlers Danlos Syndrome.

Yesterday I had an e.mail from an author over in the USA who flagged up a research paper stating that nearly a 3rd of all cases of Multiple Sclerosis are first misdiagnosed as Chronic Fatigue Syndrome.

1.usa.gov/1l5V8GL

I would be massively grateful if I could add your story to my growing list of anonymous statements from people here and elsewhere who have all suffered a misdiagnosis of Chronic Fatigue Syndrome.

At present my MP has written to the Secretary of State for Health about CFS and misdiagnosis.

We are presently awaiting a reply about this issue.

It sounds as though you are now in safe hands with the hospital in Birmingham.

It is just a shame that you had to go for so long without the correct diagnosis and the actual treatment you needed to address your symptoms.

Sincerely,

Stephen.

[andreafm]

This so sad...but so similar to a lot us here who have least found a home to rest out weary heads.

I too was diagnosed with Chronic Fatigue Syndrome around 1994 having been ill then for a number of years. So also was misdiagnosed and so was left with no help or treatment. I too was past through the psychiatric doorway which became extremely difficult at one time as I was nearly labled as having somertisation. But due to my husbands and I's determination we fought against this.

Being left like this his has made me housebound a lot of the time and very disabled. I can identify with your anger and moreso for me a real sadness at my unnecessary loss of my youth and independency.

I eventually managed to get treatment for Behcets after more than 20 years of struggling. This was around 6-7 years ago and now am in a different place in myself about it all.

I am so glad you and your husband persevered and have found good Dr's now and it is great for other people to hear that there is light at the end of the tunnel even if it was a really long tunnel.

Also glad to hear the positive news about Birmingham Centre.

Hope to hear a lot more from you in the future

Take care

[Hidden]

Hi Jaxxi,

You have had such a long battle to find out what really was making you so poorly.

Like you I have had such a fight to get a diagnosis. When you feel poorly, are in pain and are absolutely exhausted all the time, the last thing you need is to be battling to get a diagnosis, so that you can actually get some treatment that is going to help.

I can fully relate to your anger and sorrow for loosing the young woman you once were because of misdiagnosis. Before I got poorly with BD I served in the Army as a medic, and then worked as a fitness consultant and studio instructor. Back only 9-10 years ago I would think nothing of teaching 6 aerobics/body pump/indoor cycling classes a day, plus doing abdominal workouts for clients in the gym.

Now I struggle to get up the stairs at times.

Good news for you now though Hun is you have crashed through the field force and now have access to the right treatment.

I hope things start to improve for you.

Hugs

Clare

x x

[devonshiredumpling]

I didn't suffer the agonies of misdiagnosis - well, I don't think I did. I was diagnosed with IBS and various mental health issues but I think I probably had those anyway. However it did take until I was 54 before I received my BD diagnosis and, like many of us, I had suffered symptoms for most of my life.

What chimed with me was your statement about mourning the young woman you were - I think a lot of us will connect with that. I look back at the assertive, active, sociable woman I was and wonder where the hell she went cos she sure ain't living around here! I was personally responsible at times for all the pregnant women and their unborn children in the whole of North Devon. A huge geographical area and an enormous responsibility and I thrived on it - I can't even take responsibility for my own meds now!

Receiving the diagnosis is strange - with one hand it is welcome because you now have proof that you're not a hypochondriac and you're not going made. On the other hand, you have proof that you really are ill! Difficult one to balance.

I'm sure that now you have found good medical support your life and health will improve. I wish you well - and your husband of course - don't know where I'd be without my miserable old bugger!

Keep us in the loop

Di

[Tiger-Lilly]

Hi, I totally know what you mean and I too started to think I was just making a fuss about the relentless painful ulcers. I do remember being very relieved when I got my diagnosis and that a medical person actually believed me and how awful my life had been because of behcets disease but with the right treatment I am doing well and have been for many years I hope you can believe that this will happen and your pain and suffering will be eased....xxxxx

[Jaxxi]

Thank you all for your thoughtful comments.

Today I actually feel as though I have had a huge weight lifted. I had begun to suspect that my so-called CFS was doing things to me internally and it is a relief to know that if these get worse, I can get them looked at rather than having them fobbed off as 'anxiety', which is a word that appears all over my medical notes.

I will get back to you Stephen about the CFS misdiagnosis project when I have rested up a bit and regrouped.

Off to snuggle up on the sofa now for a blissful escape with 'The Voice'!

[AK13]

I totally understand how you feel I also was fobbed off for many years I am 32 and have been diagnosed two years. I had all the symptoms including a tia but was told that all of this was related to losing my mum at 16!! Even though I had all of the symptoms before she died and had had meningitis twice before then. It's strange because like you i was desperate for answers an then when I got it furious that I had been suffering so long and being told I was bonkers and that it was psychosomatic. All I can say is you know now try an not let the anger ruin what could be I hope the rd to recovery or at least a better quality of life consume you hard I no, but we can but try. I am so pleased you got your answer and hope it brings good things for you take care xx

[runninggirl08]

Hi jaxxi, I know this has been such a struggle for you to get the doctors to understand that this illness is really happening. I was misdiagnos for the first 15 years if my illness, I've had it for 30 years, It just breaks my heart that these doctors are not trained in recognizing the rarity of behcets. Do as much research as you can and share any questions on this amazing site. I wish you the best of luck