Help needed to get diagnosed...

Trialia

lita, definitely change your doctor. The ones with the kind of attitude you've mentioned are no help at all when it comes to finding answers for those of us suffering from chronic illnesses that're effectively invisible.

Don't tie yourself down to the idea of ME, though - if you can find out what is wrong and it is something treatable, then that would be all for the best. I am still seeking answers for my health problems despite having "probable fibromyalgia" written on my chart by a pain management consultant, because he didn't do all the elimination tests he could have. I don't want to be stuck with fibro the rest of my life (and with my primary condition it would not go into remission if that is what it is, being constantly set off by HEDS) if I can help it.

Indie_Kid

Trialia wrote: »

Don't tie yourself down to the idea of ME, though.

Aren't there many symptoms of ME that are also symptoms of many other conditions? I'm sure someone posted the symptoms on here one time and I have quite a few of them. According to a consultant I once saw, some people can have one the particular symptoms for no reason (ie, otherwise healthy people have it; but I have it due to another condition) and I know the other symptoms I have are down to a rare geentic condition.

Trialia

sh1305 wrote: »

Aren't there many symptoms of ME that are also symptoms of many other conditions? I'm sure someone posted the symptoms on here one time and I have quite a few of them. According to a consultant I once saw, some people can have one the particular symptoms for no reason (ie, otherwise healthy people have it; but I have it due to another condition) and I know the other symptoms I have are down to a rare genetic condition.

Exactly, which is why ME and fibromyalgia are regarded as diagnoses of exclusion.

lita

Thank you all for your replies I went to see another doctor on Tuesday who sent me for blood tests to start ruling things out. I had the bloods done on Wednesday so am just waiting for the results now.
I purposely booked a double appointment with this new doctor and told her when I went in that I had booked a double to make sure she actually had time to listen to me. She was lovely compared to the other doctor (who was a GP at a walk-in centre).
I have had tests for anaemia and thyroid problems in 2007 and they came back normal hence why I have ruled out those two problems.
Fingers crossed it all gets sorted sooner rather than later so I can start managing whatever it is that is making me feel like this.

sunnyone

lita wrote: »

Thank you all for your replies I went to see another doctor on Tuesday who sent me for blood tests to start ruling things out. I had the bloods done on Wednesday so am just waiting for the results now.
I purposely booked a double appointment with this new doctor and told her when I went in that I had booked a double to make sure she actually had time to listen to me. She was lovely compared to the other doctor (who was a GP at a walk-in centre).
I have had tests for anaemia and thyroid problems in 2007 and they came back normal hence why I have ruled out those two problems.
Fingers crossed it all gets sorted sooner rather than later so I can start managing whatever it is that is making me feel like this.

2007 is a long time ago and for thyroids my husband has the rarest thyroid condition that there is, both an under and over active thyroid!

My sons anemia came out of the blue in a healthy teenager, if your ill (as you have said you are, not sudden ill) it can happen at anytime.

Its good that this GP listened and if these tests dont show anything go back and ask whats next? If they cant find anything after a huge raft of tests and visits to specialists you might get a ME diagnosis but I hope you can pin point something else.

Invasion

ME is a flippin nightmare diagnosis, once you have it getting anyone to look into anything else is practically impossible, any new symptoms are put down to it, and they can only offer "management" and even that's limited. You definitely need new bloods, a lot can change in 3 years! Hope you can find out what's going on

Sarsie

People with ME/CFS and FibroMyalgia have told me it took them up to 10 years of going back to the Dr over and over again to get a diagnosis. They're not testable easily defined conditions, they are usually the diagnosis of last resort.

karmacookie

lita wrote: »

Thank you all for your replies I went to see another doctor on Tuesday who sent me for blood tests to start ruling things out. I had the bloods done on Wednesday so am just waiting for the results now.
I purposely booked a double appointment with this new doctor and told her when I went in that I had booked a double to make sure she actually had time to listen to me. She was lovely compared to the other doctor (who was a GP at a walk-in centre).
I have had tests for anaemia and thyroid problems in 2007 and they came back normal hence why I have ruled out those two problems.
Fingers crossed it all gets sorted sooner rather than later so I can start managing whatever it is that is making me feel like this.

It's good that you are having your bloods tested again. Be aware that the 'normal ranges' are very vast and may not be normal for you. I nearly ended up with a CFS diagnosis, my thyroid was borderline at the time. I researched this and found out that at my levels I would have been treated in the USA. So after more tests and battling with the Doc i eventually got treated for hypothyroidism and was able to get on with my life.

always ask for your test results plus ranges.

This is an interesting article about low ferritin. it's in the BMJ so worth signing up to read it. it shows that through research people can suffer from anemia symptoms with bloods at a higher level than what is considered abnotmal in tests.


http://www.bmj.com/cgi/content/full/326/7399/1124

Aputsiaq

jazabelle wrote: »

That was really interesting, thank you.

I've had this condition for 11 years - seen many GPs and consultant specialists in various fields, and never has a single one of them asked me for a list of my symptoms. They all focus in on the pain, which yes, is important, but so is the fatigue, the poor sleep and the multitude of other syptoms. I have a list I've written over the years that I update regularly if I get any new symptoms, that I take to all appointments and I often try to give it to them, or read it out - and none seem interested.

That article emphasied the importance of all of it, really.

I havent been on here for a long time and I am very surprised to see that you are now claiming that you have had this illness for 11 years.
This is the illness that you have never been diagnosed with and that (not so long ago) you have suffered with for 2 years?

Maybe there is a clue here why you keep getting knocked back.

cattmull

Aputsiaq wrote: »

Dont fret about it.
Depression can give you the same symptoms as CFS.

Actually that's incorrect. The two conditions may share some similar symptoms but there are very distinctive differences in symptoms. A Dr should be able to tell the difference between the two but sometimes they're just not well enough informed about CFS to distinguish it from other conditions.

It's very easy for people like the OPs Dr to ask people why they "want" or "need" a diagnosis, but a diagnosis can be a huge relief, especially for somebody who has been ill for a long time without knowing what is wrong with them.