Undiagnosed Merry-go-round

littlemissfixit

I have been browsing and taking part in a few threads this last year, none of which really apply to me as I have not been diagnosed with anything yet. And I was thinking I can't be the only one, and what I, and I hope others need, is just to let out some steam about this frustrating merry-go-round of health system limboland. May I just point out, this is not to look for suggestion of possible diagnosis but more to share the experiences we've had. If nothing else, it will do me good to put it out there

So let me start briefly (wishful thinking!). I have been experiencing strange symptoms since about Dec 2014, tingling, numbness, fatigue that sort of thing. Now I couldn't say enough about my GP, she is understanding and really goes out of her way to help me, all kinds of bloods were done and all was good. I got so bad at the end of 2015 that I decided to speed up things by paying for private appointments, from which came the recommendation for MRIs, which I couldn't afford at the time so went back waiting on public system. After several months, got the brain and c-spine mri done, which thankfully was completely normal to quote the letter from the neuro. And that was that, no follow up apt, no next step, just left to my own delight of the result and bafflement of the lack of continuity.
Over 18 mths on, it seems like a very long journey where not much has happened and where random symptoms seem to just hit me by bursts.
So it was back to the GP today for more bloods and another letter to neuro saying "hey! me again, mri was fine I know, but I'm not! Please help!" All the while nearly feeling guilty for the pursuit, surely it is not all in my head!
So I presume it's back to another 6 months wait, if I'm lucky.

Where are the Dr Houses when you need them!

Please don't let me be the only one ranting :P

kangaroo

I think it is quite a common experience for people to spend time being undiagnosed before finally getting a diagnosis. I have seen it mentioned with various illnesses anyway.

The illness I am most familiar with is ME/Chronic Fatigue Syndrome and it is certainly very common with that as there is no accepted and easily-accessible diagnostic test.

Gremlinertia

Took nearly nine years for me to be diagnosed with a chronic pain problem. It's unfortunate alright, think the one thing that made the difference in the few years before I was diagnosed was finally keeping a 'pain journal' with some details of diet, times of pain (on waking or when tired etc) the record seemed to give the doctors a better, more comprehensive picture. This was very important when I realized that the various hospitals and departments I was visiting weren't communicating very effectively at times.

littlemissfixit

Gremlinertia wrote: »

Took nearly nine years for me to be diagnosed with a chronic pain problem. It's unfortunate alright, think the one thing that made the difference in the few years before I was diagnosed was finally keeping a 'pain journal' with some details of diet, times of pain (on waking or when tired etc) the record seemed to give the doctors a better, more comprehensive picture. This was very important when I realized that the various hospitals and departments I was visiting weren't communicating very effectively at times.

Oh god 9 years is an awful long time without an answer! I suppose I was never aware before that there are so many conditions that have no definite diagnostic test and that the process of elimination can take so long. I blame myself a little also, I have tried more recently to keep a diary, although its not a very precise one as I tend to only note things/times when I am really bad, and I'm always afraid of paying too much attention to every detail in case I make connections I should not, the result is that I used to take down only the things that are 100% worrying and abnormal and I am only conscious now that this may not give a thorough picture to doctors.
I was happier at the start when we were able to tick a few boxes in the elimination process with blood test, now it seems nothing is being ruled in or out and it plays with my sanity a bit

Gremlinertia

I used to break the diary down into a few scales i would fill daily - discomfort levels, appetite, sleep, muscle tension etc. They were my day to day problems and once I was used to rating them on a one to ten type scale i didn't over think as much

littlemissfixit

That sounds like a good method of keeping track Gremlinertia, better than mine anyway, must give it a try.
I wonder if others have had the same impression as me, visiting some health professionals that a lot of things we say are just dismissed completely, and that the diagnostic process is so long because only one avenue is explored at any one time, and when this comes back negative it starts allover again?
I know a lot of it has to do with costs, which is all the more frustrating, seen it first hand when I was seen private, it was suggested I get brain and spine MRI, I couldn't afford the cost at the time, so I waited and when seen as a public patient, only brain was ordered!

littlemissfixit

Awaiting another neuro appointment in 4 weeks time. After being discharged (dismissed) from a normal brain MRI, I had to go to the gp again having another long spell of fatigue, facial twitching and severe pain, a stiffness present every day and recurrent excessive night sweats among other things. It settling down a bit again now. Hoping the neuro might bother with a few more tests!

failinis

Not the only one, have been told I was "making it up" since I was a child as they could never find the cause.
Now they are entertaining the idea of a new genetic mutation or a neurological issue - either way it is still undiagnosed but at least, it is now being investigated.

I think a lot of people be waiting a long time, its very frustrating, I hope you can get an answer soon xx

littlemissfixit

Thanks for the reply Failinis. In our group of people still searching we are probably all going through the same kind of emotions and sharing it think is the key, a bit of the weight of our shoulder. If you're like me, I avoid now talking or complaining too much to the people close to me that know my issues, there are only a couple and I don't want to burden them with it all. So brave face on out there, big moaner in here
Let us know how you get on, best of luck x

ftse100

This is very close to how I feel on a daily basis. Over the last 12 months I have felt as you have described in your post. I also get eye floaters, muscle twitches, dull headaches and I sometimes feel unbalanced. I've got all the bloods done and brain/Spinal MRI. Seen the top neuro in Ireland and he told me I most likely had 'Silent Migraines' and sent me on my merry way. It's been 5 months since I've seen a doc and I feel as bad as ever. Some days are worse than others it has become the new norm for me. Not really sure where to go from here..

littlemissfixit

Yes I often have to remind myself of what I was like and what I could do just a year ago to realize how much my health has deteriorated, otherwise, like you, it just becomes norm.
What about finding a new GP and starting from the beginning, sometimes new fresh look on things...

littlemissfixit

Had the neuro appointment and an endless list of blood test done. Phoned the secretary 8 weeks later as I hadn't heard anything and was told that not all the results were in yet!!!?!! Phoned again today, the secretary was very surprised I hadn't been contacted, surprised too that there was still some results missing that should have been back by now. She couldn't tell me anything herself but she is sending the results that are in to my GP now. My appointment was 3 months ago. Is it any surprise that we are waiting for years to figure anything out, if at all. Very frustrated with it all!

ftse100

littlemissfixit wrote: »

Had the neuro appointment and an endless list of blood test done. Phoned the secretary 8 weeks later as I hadn't heard anything and was told that not all the results were in yet!!!?!! Phoned again today, the secretary was very surprised I hadn't been contacted, surprised too that there was still some results missing that should have been back by now. She couldn't tell me anything herself but she is sending the results that are in to my GP now. My appointment was 3 months ago. Is it any surprise that we are waiting for years to figure anything out, if at all. Very frustrated with it all!

Best of Luck, let us know how it goes.. How are the symptoms?

littlemissfixit

Thanks! How are you yourself? I'm very grateful I'm feeling quite well at the moment.
Had another bad spell end of summer, new symptoms joined old ones, among others some terribly annoying face twitching which would come and go several times a day. This was followed by a few days of severe pain on the left side of my face, then buzzing, and then it all calm down. I still get bad twitching when I yawn, laugh, sneeze etc. but it's a lot better. The fatigue was fairly bad at that time too, and that's got better again as well thankfully. Progression of old symptoms and addition of new ones being the worrying part of things.
I've tried to get back to some level of activity this week (light exercises, 20 min moderate walk) and I have to admit it to myself, any light exercise will tax my energy and cause me pain for the following 48 hrs at least. But I want to keep it up regardless and see if it improves.
All the moaning aside, I am really looking forward to being on holidays next week and enjoying Christmas with my beautiful munchkins!!