Anyone else have an undiagnosed illness?

cally6008

How's everyone doing ?

I'm bouncing literally, although ready to drop n sleep at a moments notice cos just cycled one mile on exercise bike. I went to docs this morning and have finally (hurrahhhhhh) been given Amitriptyline to help aid better sleep to help my body heal and function normally. The diagnosis ... possible Fibromyalga (or however it spelt).

At last, a doctor who is looking at the whole picture. I do have Hypermobile joints but the problem is my muscles instead .. LOL.

Guapa1

Yay! Cally I'm happy you're able to get some rest, and the doctors are now taking you seriously. Why does it take them so long to listen?

Well I saw the neurologist and he was a bit dismissive of me at first. There were students in the room and he spent a lot of time explaining why they ask questions. I had to walk up and down and they called it abnormal because I wasn't taking proper strides because it hurt.

Out came the little hammer and he started to hit my reflexes. None of the reflexes in my left arm worked. That got his attention!

So he's sending me for another MRI and has booked a EKG for me too. I'm trying not to get excited about a possible diagnosis, so I've told no-one really so I don't think about it too much.

My follow up appointment is in December.

I also decided to order a copy of my MRIs. An old osteo I used to see always said that doctors don't look at scans the way alternative medicine does and even if they say nothing wrong, they mean there is nothing surgically wrong, but it doesn't mean that everything is fine.
The cd came through with a copy of the radiologists' report where they reported a significant loss in my neck curve also called military neck. Not something you can work on surgically, but something that can cause a lot of pain. No mention of it to me though.

Anyone else having any joy? x

Indie_Kid

I do kind of have an undiagnosed illness. I have various eye problems. Now, one of the problems, there's usually a cause for it. My parents got told 16 years ago (when I was 4) that they didn't know why I had this problem and just told them to accept it and that was that. After having a chat with a few professionals, I have decided to have a test done. Ok, it's possible there isn't a cause.

I do have another undiagnosed problem - 2 blood tests have come back clear (one of which was for Crohns) and the doctors won't do anything else about it.

Trialia

Guapa, nerve damage is notoriously difficult to diagnose. I had an accident about four years ago that caused internal bruising in my lumbar spinal area and have been in chronic pain ever since (though I was in some joint pain before that due to HMS). About a year ago they finally decided to refer me to a pain management clinic, where the consultant took a long look at my medical records and wrote down "probable fibromyalgia" on my chart.

Apparently I have nerve damage in my back, and spinal injuries can be a common cause of fibromyalgia, so I think it is highly likely, given your test results, that you do as well - FM is traditionally a diagnosis of exclusion, that you get when most of the tests come back clear and you're still in chronic pain.

It is hard as hell to deal with getting a diagnosis in the first place in conditions like these. Especially if you're young - I had my accident at age 19 and I'm about to turn 24 - because even doctors don't believe young people can be ill if they don't look it, quite often. It's very depressing. But push through, because the feeling of actually getting an answer really does help. Once you have an answer, you can start getting proper treatment insofar as it's available, and that will make life so much better for you. Hang in there.

LadyMorticia

I just want to say that I hope everyone here manages to get diagnoses.

Whilst it's horrible being ill and in so much pain, it's worse when you have no idea what's wrong and you can't put a name to the way you feel.

madabout

Hi there. Only just found this thread and I know exactly how you feel!

10yrs ago I broke my back (L2) and since then I've managed it with osteo every 3 mths (nhs no use) and care. Then in March I started getting severe problems-high level pain, numbness in my legs etc etc. Some days I could barely walk. No apparent trigger.

I knew that this wasn't normal for me and that something was wrong but I still had to wait the obligatory 6weeks before the drs could refer me for more tests. I badgered and luckily had good dr who got me in for xrays and mri as soon as he could. Saw a physiotherapist at the hospital who basically decided that I was overeacting and that it would ease in time. MRI came back clear and although I was relieved it wasn't anything sinister I was also completely frustrated that I didn't have an answer.

Pain clinic dr saw me and from my drs report was ready to prescribe me morphine/epidural but at that time I was doing better (still struggling but better) and so I was to continue with physiotherapy.

Standard physiotherapist took a sharp intake of breath and said 'oh my' when she saw my back and accupuncture helps manage it but doesn't solve the problem.

In the last 8mths I've had such a rollercoaster with my back. Some days I'm almost normal, other days I collapse in Tesco because of the spasms going through my back and buttocks. My new dr was so concerned about the spasms in my back muscles and the tightness of them he prescribed me diazepam to help them relax. Luckily he also totally supports and in fact encourages me to horse ride-I stopped for 4mths but it didn't help and riding actually makes my back better.

Some days I wonder if I'll ever get better and others I'm determined I will. Hope all the rest of you get some answers/relief soon.

LilacPixie

I have god knows what. I know i have pernicious anema but they don't know why I also have nerve damage in my hands and feet that they (gastro consultant) contributed to damage to my CNS caused by lack of b12. now after 5+ years of mnthly b12 injections and stable blood results nerve damage is getting worse to the point i'm numb to knee/elbow region. I get sporadic pins and needles and can't feel hot/cold so keep burning myself. I am finding walking more and more difficult and driving has been abandoned. I am finding my hands and sometimes feet have started to spasm and cramp up for no apparent reason.

I was referred to a neurologist who also observed i was hyper reflexive. I have been tested for what seems everything from lyme disease to HIV with the final test being an MRI. The MRI has apparently shown abnormalities/anomolays and i have my neuro consultant on Friday to find out exactly what these anomolays are/were.

I am at the stage where I just need to know. I need to plan and do something rather than sit about at the liberty of some as yet unknown condition

dorey69

i hve been fighting for nearly 5 years after an hysterectomy has left me with pain i have never and would not wish on anyone. i have had mri scan etc and they keep saying nothing wrong. my tum is swelled all the time. had tests on my bladder and they say few sensor nerves mite have been damaged. not sure if its my bowel, but i have given up with the nhs. my own doctor who keeps saying they have done everything wont beleave what i say. i took a overdose in oct 07 and still this continues. know i am fighting with dwp to stay on the sick but i dont know what to do next. if my doctors say there is nothing wrong how can i fight any more. this has drove me mad. i know my body and cant take much more. in debt from going private doc's. who just read the other notes from the doctors and wont listen to what i say. i have never relied on any one all my life and now i can not do the simple things in the house. the list is endless i could write a book. pain killers do nothing. my last hope is writng to this morning to see if they can help. i turned 40 this year and feel my life is over.

dorey69

they have stopped my money so my debts are going to higher. help

Guapa1

Guapa1 wrote: »

Thanks for replying.
While yesterday I went to the doctors and promptly burst into tears. I could hardly walk, and told him that with no painkillers, nothing has changed. I also had a the award letter I got when I went to tribunal for a benefit.
It said I needed further investigation.
So he has put my name down for an mri and sent for loads of blood tests including the one for AS.

I know this is going to sound really odd, but I'm really hoping they'll find something.
There has to be an explanation, there just has to be!

I'm fuming. :mad:
I went to see a GP today. I go and see a lady doctor for lady things (:o). I told her about my period pain so she said she's going to send me for a blood test, and went into my notes to see when I last had some done.

She looked at it, and then said, 'are you still taking iron tablets from the last blood test?'. I said no, because I was told it was all normal and she said no, you were very low on iron and calcium and vitamin D. Now I had been looking at the link between vitamin d and pain, and had asked for that as well as a test to see if I had ankylosing spondylitis. I was told it was all fine.

So I left the surgery in shock, with about 8 different presciptions, and when I got home, realised I didn't ask her about the AS tests.

I finally spoke to her, and she said there has been no test for ankylosing spondylitis done. She said my anti bodies are not raised which is now the marker.

Trialia wrote: »

Guapa, nerve damage is notoriously difficult to diagnose. I had an accident about four years ago that caused internal bruising in my lumbar spinal area and have been in chronic pain ever since (though I was in some joint pain before that due to HMS). About a year ago they finally decided to refer me to a pain management clinic, where the consultant took a long look at my medical records and wrote down "probable fibromyalgia" on my chart.

Apparently I have nerve damage in my back, and spinal injuries can be a common cause of fibromyalgia, so I think it is highly likely, given your test results, that you do as well - FM is traditionally a diagnosis of exclusion, that you get when most of the tests come back clear and you're still in chronic pain.

It is hard as hell to deal with getting a diagnosis in the first place in conditions like these. Especially if you're young - I had my accident at age 19 and I'm about to turn 24 - because even doctors don't believe young people can be ill if they don't look it, quite often. It's very depressing. But push through, because the feeling of actually getting an answer really does help. Once you have an answer, you can start getting proper treatment insofar as it's available, and that will make life so much better for you. Hang in there.

Thanks Trialia, I'm so fed up of it all. I walk funny, and hate going out alone. How did they realise that your spine was bruised? I have yet another MRI tomorrow. I just wish I could go to sleep and wake up better.