Why won't anyone diagnose me!

dlofnep

I've had muscle pain in my legs which sometimes goes into my arms if I have had a bad day. I am completely intolerant to bread, caffeine, potatoes and sugar - They all make my pains MUCH worse.

I've been trying to diagnose myself.. At first I thought M.E, then Fibromyalgia.. I know what makes it worse, but even with a good diet it's still "present".

This all began with a pain in my lower right back.. A kind of dull pain. I was also extremely fatigued and had to keep sleeping. Which is why I thought it was M.E at first. The fatigue only lasted a month, but the 5 months after that the pain decided to stay.

I don't know who to talk to. My doctor referred me to hospital, they took blood tests and an ultra sound over the duration of 4 months but found nothing. So I go to a second doctor for a second opinion and he tells me to cut out sugar and breads for a month and see what it does. I explained I had already been doing this, but he didn't seem to care. I asked him to test me for coeliac as my symptoms were very similar to a friend online who has coeliac), but he said I probably don't have it because I'm not thin (im not fat either!).. It's better than doing nothing!

So the month is up and I still feel the same.. The closest I've got to a diagnosis is from an acupuncturist who said I had fibroymalgia. But he didn't test me, he just guessed. I want a real diagnosis! I want to know what the hell is ruining my life. Why are so many doctors clueless or inconsiderate or casual to tell me to wait a month when I've already been through hell for 6 months. They are happy so long as they get their money.

I'm a student so i dont have alot of money, but I'd be willing the pay to see a specialist. But who? I don't know who to go and see. I don't even know where to begin. I've been to the local doctors like 10 times, hospital 4 times.. All I get is the same old crap, blood tests, tell me to wait a month.. Rinse repeat.

I'm so aggrivated right now with medical professionals and life. I don't know what to do. I'm sorry to sound like such a moanbag, but my life is living hell.

galah

Try and see a good rheumatologist, or a GP who actually knows what he/she is doing!

Maybe it's gluten-intolerance instead of fibro? (just a guess, I'm not a doctor, but I have been diagnosed with fibro (after running around for the best part of 4 years to get some sort of a diagnosis), and diet does not make a difference to my symptoms, that's why...)).
Edit - just read your paragraph about coeliacs - hm....

Anyways, good luck, and don't be afraid to change doctors as much as you have to to get a proper diagnosis!

Kattyboy25

yeah see a rheumatologist. Never try to diagnose yourself, you'll end up becoming obsessed with trying to diagnose yourself and not believing what the specialists are telling you. Best this you should be doing is researching a good specialist. There is a great rheumatologist in the Mater, but also check out what specialists are available in Blackrock Clinic. Your a student and you should have health insurance so you'll be able to be seen privately.

dlofnep

Ok guys thanks.

I've seen the two different practices in my towns, there are no other places to go which is why I feel so lost I'll find out about a rheumatologist.. Thanks again

tallaght01

Sometimes medicine doesn't have the answers.

People present themselves to doctors every single day, with odd collections of symptoms that don't fit, or that don't add up to anything definitive.
Blood tests and ultrasounds can diagnose certain conditions, but they can't diagnose everything. In fact, they can't diagnose most things.

Put yourself in your GPs likely position....Youve got unusual symptoms. You've probably no abnormality to find on examining you. Your blood tests are negative. Your ultrasound was negative.
It's a very hard position for a doctor to be in.
Comments like "They don't care as long as they get their money" are nonsense but are understandable because they are borne out of frustration.

But sometimes you just have to say to a patient that you have no idea what's wrong with them. Sometimes medicine doesn't have the answers. Both the medical profession and the public have always struggled with this concept. I've only recently embraced it.

Also, there are lots of physical conditions caused by stress and fatigue. GPs know this better than any doctor. They talk about it all the time. But they pretty rarely suggest it to patients, because people don't regard it as a "real" diagnosis, and in fact they get offended when it's suggested.

Just look at any internet thread on ME/fibromyalgia.

I hope you get better soon.

dlofnep

I've been called back out to the medical assessment unit next week. Probably more of the same..

CathyMoran

dlofnep wrote:

I've been called back out to the medical assessment unit next week. Probably more of the same..

Keep on persuing a diagnosis. I had people saying that there was nothing wrong with me and that it was psychosomatic but in the end I was diagnosed. Do not give up hope.

Jeapy

Firstly...stop trying to diagnose yourself. It will do you no good. Although it might seem that it will put your mind at rest, it wont, it will very probably just make you more paranoid and frustrated.

Secondly, Ive been misdiagnosed twice in recent years, nothing serious thank God. One is that when i eat anything with nuts in (at least some types eg peanut, hazelnut, brazilnut, almond) I get huge hives. I saw a GP (student health centre) who took blood and sent it to an Immunology lab which showed I had a raised IgE but was NOT allergic to nuts. So thats fine, but I work in science so when I questioned the immunology lab, they said that Im probably reacting to a different part of the nut (epitope) than the one that they test for. I have no doubt that Im allergic to them! Sometimes GPs interpret results differently and sometimes science cant exclude a problem fully.

The other time was in 2nd year in college, I as pretty stressed and had a sore throat and developed a rash on my upper inner arm. Within days it was on my chest and other arm, so I went to the doctor (same one as above) who told me I had a fungal skin infection and pretty much said that I didnt wash enough (highly offensive and untrue). He gave me a prescription that cost about 30 euro but after a week, the rash had spread to my legs. So at that, I went to my own GP at home, who looked at my rash for less than 10 seconds, looked at my throat and asked if I was under pressure and immediately diagnosed it as Guttate Psoriasis which is very far from a fungal infection.

So my point to that long winded story is...do keep looking for an answer, but not on the internet!!! Eventually, it will work out for you, hopefully sooner rather than later. Good luck with everything!;)

condra

John.

I agree self diagnosis is bad, and worse still if you decide to treat yourself. At the same time, I think the internet is great for research. My doctor recently told me that I had basically been "tested for everything", but I recently found out about several common conditions relative to my symtoms, which I have not been tested for.

Dont let anyone tell you its all in your head. Keep fighting, Ive been fighting nearly 6 years.

One other bit of advice would be to think "outside the box" when considering specialists.
What I mean is, back pain symptoms could be associated with lots of things, from autoimmune stuff to gastro-intestinal etc.

Good luck. Dont give up.

lezizi

reading your story it reminds me of the position i was in 3 years ago, same symptoms same suggestions like me ect. eventually 2 years ago i was diagnosed with Myasthenia Gravis, it is quiet rare here so doctors dont generally look for it, i had been to see numerous neurologists, rheumatologists ect but no one knew what was wrong.
It took a long time but i eventually find an answer, and im sure you will too. Look up anything about Myasthenia gravis because it has a lot of the symptoms that can be mistaken for fybromylagia