Anyone else have an undiagnosed illness?

Cheeky_Chicken

sunnyone wrote: »

Do you mean HMS?

If you do it hypermobile syndrome, we are very bendy and our joints dislocate all the time.

sunnyone

Oooh are you a bendy one too?? :rotfl::rotfl::rotfl: Ah but have you got a leaflet like what I got?? :rotfl::rotfl::rotfl: (felt like framing it at the time, I was so pleased!!) :rotfl::rotfl::rotfl:

cally6008

I'm a bendy one as well <waves>. Diagnosed as just HM (after 3 years and this was about 18 months ago) but know I have the HMS. Currently suffering the chronic fatigue symptoms and awful sleeping habits that are driving my OH up the wall. Are you fellow bendies on the HMS forum or Facebook groups ? Pain levels, cracking joints and stiffness are driving me up the wall and getting me down again.

beautifullybroken

It took the doctors/medical team 12 years to diagnose what was wrong with me so i can totally sympathise with you and hope you get a diagnosis and some pain relief soon

GlasweJen

I went undiagnosed for years as well, was diagnosed at 17 with a condition i'd suffered since early childhood.

Guapa1

Crazy_Jamie wrote: »

You say that this was as a result of an accident and you have a solicitor. Is this therefore a personal injury claim? If so, how long ago did it happen and have you had a medical examination organised by the solicitor?

Just as an update, I went to this today and he said he suspects I've got some nerve damage and told me to get my doctor to prescribe me some gabapentin (?)
He urged me to push for an MRI. I've had letter through from the orthopaedics department for a consultation appointment. It's all the way in June and I'd still have to wait for a scan. I phoned then to say I'm not working at the moment, so please put my name down for last minute cancellations.
They said they don't have lists like that and I had to keep calling up to check. I've got the number saved in my mobile and phone morning and evening.
I've also got a meeting with work this week. I'm going to them to ask if they'll fund a private scan.

I'm shocked that people can be ill for so many years without proper investigation. What exactly do we pay for?

Mrs_P_Pincher

You are not alone. I have a number of symptoms that point clearly to a metabolic condition that is easily treatable. However, for the last five years I have been trying to find a consultant who will look at the whole picture rather than just one symptom and I'm getting absolutely nowhere! In the meantime I am losing mobility and life is becoming quite limited in many ways. The last consultant I saw said I was depressed, which was a great help. Angry yes, frustrated yes, depressed - no.

All you can do is hang in there and keep fighting.

Mrs P P

Guapa1

Guapa1 wrote: »

Just as an update, I went to this today and he said he suspects I've got some nerve damage and told me to get my doctor to prescribe me some gabapentin (?)
He urged me to push for an MRI. I've had letter through from the orthopaedics department for a consultation appointment. It's all the way in June and I'd still have to wait for a scan. I phoned then to say I'm not working at the moment, so please put my name down for last minute cancellations.
They said they don't have lists like that and I had to keep calling up to check. I've got the number saved in my mobile and phone morning and evening.
I've also got a meeting with work this week. I'm going to them to ask if they'll fund a private scan.

I'm shocked that people can be ill for so many years without proper investigation. What exactly do we pay for?

I got a copy of the report this specialist done, and he didn't mention any of this. Just that it's all in my head.

Had my mri scans results back today, and they were fine. I was gutted. I couldn't stop crying, and the ortho surgeon said he'll refer me to a neurologist. I could see it was to get me out of his office than him actually believing anything is wrong.
Maybe it is all in my head, maybe i am the mad one.

cally6008

guapa1 - you are NOT mad, it is NOT all in your head

just had a quick skim back over this thread but not sure what illness your docs thinks you may have

my MRI scan showed nothing until the rhuemy put it on a different software and it showed a slight increase/widening on/round my right sacro-illac joint which is were my pain stems from

mealone

Guapa1 wrote: »

I got a copy of the report this specialist done, and he didn't mention any of this. Just that it's all in my head.

Had my mri scans results back today, and they were fine. I was gutted. I couldn't stop crying, and the ortho surgeon said he'll refer me to a neurologist. I could see it was to get me out of his office than him actually believing anything is wrong.
Maybe it is all in my head, maybe i am the mad one.

I am forty and if you take 50 people of my age of mixed sex and MRI`d them all, then had the scans read even with a previous medical history you couldnt match the scan to the person it related too in most cases.

Some may have a a shed load of problems yet the scan may appear normal, others may be fit enough for the olympics and have no problems.

Keep trying for answers, thats what most people do and in the end you do find out whats wrong. maybe its transfered pain or the damage is in a diffrent area or its nuerological, who knows but only you know what it causes to you so just remember that.

Guapa1

cally6008 wrote: »

guapa1 - you are NOT mad, it is NOT all in your head

just had a quick skim back over this thread but not sure what illness your docs thinks you may have

My doctor thinks it's whiplash, and that because I've been in so many accidents in the past decade I'm developing abnormal pain behaviour. I'm saying because I've had these accidents, I know that this is different.

I'm at the end of my tether now. I really thought the scans were going to be the magic solution to all of my problems.