I'm trying not to get my hopes up...

[mouse_chalk]

I have an appointment with another Ear Nose and Throat consultant on Tuesday. I think this will be the 4th consultant that I've seen about my dizziness.

Short history because most of you will have heard all this before: I have been 'dizzy' since January 2007- almost 2 and a half years. Mostly I feel very off-balance all the time, but it can be very severe and lead me to stumble, bump into things, and even fall over. I feel constantly groggy and like I'm not sober- almost like I'm looking at life through a cloudy camera lens or something. I get blurry vision, and sounds really affect me. Multiple sounds in the same room will make me more dizzy, and some sounds are worse than others- like eating crisps, the crunch of it makes me feel dizzy and lots of loud noises are unbearable.

I've seen several doctors, had an MRI scan, blood tests, hearing tests. And they have all come back clear. All I've ever been told is that there is nothing 'seriously' wrong with me and that I probably have Labyrinthitis. I have been given balance exercises to do, which haven't worked in the 18 months I've been doing them, and have tried countless medications that haven't worked. I have always encountered disbelief from others- there's nothing physical to show of my condition, so therefore I must be making it up. I've even wondered myself at times if I was going mad. But this week being away with my friends I realised- I just can't do it. I tried to keep up with them the whole time and it only resulted in me feeling terrible, and I've been feeling terrible ever since I got back. I pushed myself way too far, because I wanted to have a good time and forget about being dizzy for once.


All along I have had this niggling thing- maybe it's not labyrinthitis? Maybe it's something else? There are other inner-ear/balance disorders that have the same symptoms, that don't show anything on an MRI scan (labyrinthitis doesn't either), what if it's something else?


My GP referred me back to another consultant because he just can't help me. All he can do is sign my sick notes and give me various medications to try that don't work.


Anyway, so I'm going to see a new consultant, on Tuesday morning. I just can't help but have a small hope that maybe this might be it- that finally a doctor might take me seriously and believe me, that they might sit up and listen and realise that I just have to have my life back after nearly 2 and a half years and would do anything to be how I used to be. But I think that most of all I'm hoping that I'll either get a definite diagnosis, or that they might find it to be something else, something curable.


I don't know if maybe it is something else (I've been doing a lot of reading but I don't want to self-diagnose or anything), or if I just want it to be something else. Not something serious, something fixable. It might sound a bit weird to want there to be something wrong with me, and it's probably come out the wrong way lol. I know there are people much much worse off than me, I'm lucky really.


This was supposed to be a short post lol. I'm so bad at that! I am really trying not to get my hopes up about Tuesday, but I can't help but daydream. Must think realistic thoughts. Any good thoughts would be very much appreciated And if you made it through to the end of this post, then well done to you!

 

[DeniseJP]

Jen - hope they can find out what is wrong... I have had Labyrinthitis and it is not fun... II have a stash of prescription Dramamine to alleviate the symptoms.

Good luck - and prayers for you for a solution to whatever is causing your dizziness.

Denise

 

[Luvr of Wabbits and Polar Bears]

Jen, I really hope this doc can help you out. I dont know what your going threw but can only imagine it and it doesn't sound like fun at all being dizzy and groggy all the time.

Here's hope this doc listen and you get better soon. When's your apt. for your wisdom teeth?

 

[slavetoabunny]

I hope the new doctor finds something. It can be so frustrating not knowing what is wrong. Good luck!

 

[hartleybun]

jen - am sending good wishes up the m5, the wind is blowing your way so they should be with you soon. the bunnies have gotten their pawa crossed for you and we all hope that tuesday goes well. dont ever think that you're going mad - the problem is with doctors who need a visible sign of illness not you. be strong and you will get the help you need:brownbunny:bunnyhug:

 

[mouse_chalk]

Thank you guys. I really appreciate your support and good thoughts

I'm really worrying about it now. I don't know why! I just keep worrying that he will just be like all the other doctors and tell me there's nothing wrong and that it will go away and that I should be as active as possible (If I do that, I get worse not better- hence feeling awful after my holiday), and that I'll still be stuck in the same boat. I'm so scared that all these other conditions I'm reading about, I'm just hoping it will be something else treatable and that I'm wrong, and it really is just.... something I'm stuck with Even if he told me- 'you're likely to have this for a long time, perhaps even forever' it'd be something a bit more certain, rather than this will I get my life back or wont I situation I'm in at the moment.... :expressionless

This is the other condition I've been reading about- not entirely curable or treatable, but a lot of my symptoms fit. Then again my symptoms fit with a lot of things!

http://www.tchain.com/otoneurology/disorders/unilat/fistula.html


Can't wait to get Tuesday over with! :nerves1


And Donna, thank you for sending your good thoughts up the M5- they must have got here by now as my hair is all messed up from the wind!



And my wisdom teeth are coming out on May 20th! Hurrah! At least that's the day I get admitted into hospital. Whether they'll get around to me on that day or if I'll have to wait in there starved for a while is another story- it's a routine op so there could be emergencies that trump me! As a side, my doctors don't think my wisdom teeth impactions have anything to do with the dizziness....

 

[CorkysMom]

Took me over 2 years 8 cardiologists later to finally get some resolution to my heart issues....I know the ups and downs of always feeling like crap and having dr's not take you seriously....g/l and kudos to you for sticking w/ it and not giving up....it sucks...I hope this one is the one for you and you finally get some news! Take care and hang inthere!

 

[mouse_chalk]

Thank you It really means a lot to have the support of you guys on here. I feel like very few people understand, so it really is appreciated

 

[mouse_chalk]

We're on our way there now. I'm scared.... :s

 

[mouse_chalk]

It was such a waste of time. And I can't stop crying :cry1:



I didn't see the consultant himself. I saw a junior doctor. Apparently you don't often see the consultant.

He is referring me for a CT scan, but only because I practically begged for one, although he tried to warn me off because of the radiation exposure. Like I care!

He thinks it will probably come back clear though. In which case they wont know what's wrong with me, and it might just be 'one of those things' that I'm stuck with, and will have to try medication again, even though none of it's worked before, in fact made it worse.

He did say that it's not labyrinthitis because if it was it would have cleared up and got better now. Which makes sense because everyone who I've ever spoken to who's had Labyrinthitis says 'oh that! I had that, I was really ill for about 6 weeks and then it went and I've been fine ever since! Why aren't you better yet?'



How can they just NOT know what's wrong with me? How can they have a patient who has been unable to work for 2 and a half years and not be able to tell them anything about why they are ill? I just don't understand.... :cry1:


Sorry.... that's all probably very 'poor me'.....

 

[hartleybun]

:bunnyhug:heading up the M5 now

 

[RexyRex]

:hug: I'm sorry that the doctor's visit didn't give you any answers. Maybe the CT scan will show something. Is that the first one that you've had done? I hope that someone can figure this out for you soon. I can't imagine how it must feel to be ill all the time and no one can help you.

 

[bat42072]

don't give up... I am praying they find a cause for why you are sick so you can get better and live a normal life...

 

[Mrs. PBJ]

You need to keep trying find a doctor that will really listen to you.

I have low iron and when my mom was trying to figure out why I could not stay awake in school they all kept saying that I was a normal teenager trying to stay out of trouble.

Well finally one doctor listened and did a blood test and I was hospitallized for 3 weeks to bring my iron up and my mom filed a law suite.

Needless to say dont give up. Someone out there will be able to help you

 

[Becca]

Sorry today was a dissapointment Jen Its so annoying when no one knows whats wrong with you (I am/was the same - remember we used to talk about it on MSN) I just hope soon a 'dream doctor' comes along and gets your life back to normal because you deserve it!
Fingers crossed for you xxxxxxxxxxxxxxxxxxxx

 

[degrassi]

mouse_chalk wrote:

It was such a waste of time. And I can't stop crying :cry1:



I didn't see the consultant himself. I saw a junior doctor. Apparently you don't often see the consultant.

He is referring me for a CT scan, but only because I practically begged for one, although he tried to warn me off because of the radiation exposure. Like I care!

He thinks it will probably come back clear though. In which case they wont know what's wrong with me, and it might just be 'one of those things' that I'm stuck with, and will have to try medication again, even though none of it's worked before, in fact made it worse.

He did say that it's not labyrinthitis because if it was it would have cleared up and got better now. Which makes sense because everyone who I've ever spoken to who's had Labyrinthitis says 'oh that! I had that, I was really ill for about 6 weeks and then it went and I've been fine ever since! Why aren't you better yet?'



How can they just NOT know what's wrong with me? How can they have a patient who has been unable to work for 2 and a half years and not be able to tell them anything about why they are ill? I just don't understand.... :cry1:


Sorry.... that's all probably very 'poor me'.....

I"m sorry you are not having any luck getting diagnosed. I"ve had similar issues with doctors and specialists and you just have to stick it out and keep trying new ones until you find one that can help. It took me years of going to specialists to finally get diagnosed and even then they said "that shouldn't cause pain" and that they didn't know how to help me as its pretty rare. So they basically want me to suck it up and live with it which is basically impossible. I had to drop out of school at 15 and I've been unable to work since it started(i'm now 25).

But I haven't given up. I keep trying new doctors, keep researching it myself, trying alternative medicines(acupuncture, naturopathy etc). So far no luck curing my issues but the alternative medicines have been the only thing that have helped. So maybe you can try that while you are waiting for a diagnosis.

Also, 99% of doctors can't diagnose the "weirder" problems. Unless its a common thing they are used to seeing or learned about in school, they have no idea. Most doctors aren't educated on the rarer problems, and dont' take it upon themselves to learn. It will be a long journey but you have to find a doctor that is willing to do every test and research to try and help you. One that won't stop trying new things. If you haven't found one yet don't give up.

If you ever want to chat feel free to pm me. I definitely know what you are going through and now hard it is. Hang in there.

 

[CorkysMom]

Sorry today didn't go better...I agree..keep trying...eventually you will find a dr that will listen.

 

[mouse_chalk]

Thank you everyone I really appreciate all the good thoughts and support! It's so much more than I've ever had from the health professionals lol....

I have posted on a 'dizzy' support forum, about my plight and have been told about a professor in London who is supposed to be world-renowned in vestibular disorders- at treating them and diagnosing. Steve has already tried to get hold of her secretary to find out how much a private consultation might cost. Bless him. I don't know what I'd do without him!

I haven't had a CT scan before, although I have had an MRI scan, which came back clear. From what I've read, they both show different things, although the doctor I saw earlier seemed to think that the MRI result was sufficient. He really didn't want to send me for that CT! ssd:


degrassi, I had accupuncture about 2 years ago, which I am not sure if it helped a bit, or if I just went through a brief period of recovery, but I got slightly better after 12 weeks of work and some accupuncture, and then went back to work, and went back to square one and had to go off sick again. That was in July 2007 and I haven't worked since. I would try the accupuncture again, but it's expensive. I've also heard that homeopathic remedies could help, but the cost of seeing one and getting the stuff made up for you is ridiculous!


Steve keeps telling me to keep fighting, and to be the bunny mum who is always so insistent with the vets on getting the right treatment for them, and to apply that to myself, but it's so hard. It makes me so angry that doctors can just fob people off and tell them there's nothing wrong, and they have to basically live their life in such a limited way, because they either don't know, don't want to admit they don't know, or don't care. I know they aren't all like that but it's getting hard to find one who isn't! :rollseyes

 

[degrassi]

Have you asked to have a copy of your file, specifically any test results from the MRI.

I had multiple MRIs and CT scans and the doctors said they found nothing. I was finally sent to a neuro surgeon and he took one look at the report and said its Dural ectasia. Then I asked for my file and read the results myselft. Plain as day the first MRI results said "Dural ectasia", which is what I was finally diagnosed with. I went back to the original doctors and they said that "oh thats nothing" and " DE doesn't cause pain" so they didn't mention it to me. Well it turns out DE can cause pain but since the books say it doesn't, most doctors dont' know any better.

So ask for a copy of your file if you havent' already. Also, bring it along to any new doctors you see.

Frankly after seeing dozens of docs and specialists i'm a bit bitter. Most docs dont' know much and are very bad at their jobs. Its hard to find one that will listen and work with you. You are your best advocate. Research, research, research.

 

[mouse_chalk]

degrassi wrote:

Have you asked to have a copy of your file, specifically any test results from the MRI.

I had multiple MRIs and CT scans and the doctors said they found nothing. I was finally sent to a neuro surgeon and he took one look at the report and said its Dural ectasia. Then I asked for my file and read the results myselft. Plain as day the first MRI results said "Dural ectasia", which is what I was finally diagnosed with. I went back to the original doctors and they said that "oh thats nothing" and " DE doesn't cause pain" so they didn't mention it to me. Well it turns out DE can cause pain but since the books say it doesn't, most doctors dont' know any better.

So ask for a copy of your file if you havent' already. Also, bring it along to any new doctors you see.

Frankly after seeing dozens of docs and specialists i'm a bit bitter. Most docs dont' know much and are very bad at their jobs. Its hard to find one that will listen and work with you. You are your best advocate. Research, research, research.

Oh my gosh! No wonder you're a bit bitter after all that! I would be too! I can't believe the doctors would discover something on your scan and just not tell you about it...


I haven't actually seen my MRI scans or most of my other doctors notes. I saw a lot of the letters last year when my works insuranc were trying to prove I'm not ill and ordered all my medical files from my doctor, but there were no test results etc in there to see- just letters of referral etc.

I might try and call the hospital where I had the scan done to see if I can get a hold of it. Or maybe my GP might know....

The thing I most want to get a hold of are the results for my hearing test. Back in 2004 when I started working for a mobile phone company in the call centre, I had a hearing test which was standard procedure. They said my hearing was 'excellent' for someone of my age. All my ENT consultants have performed hearing tests over the past couple of years- countless times- and each time they've said my hearing is 'normal'. The one I had yesterday came back that my right ear is worse for hearing than my left ear. So I HAVE had hearing loss, in the one ear, even if it is only slight. That makes me want to look at my other hearing test results to see what they show, to compare. How can they say you have no hearing loss if they don't know what your hearing level was at before?!!

Now when I fall and stumble and get the vertigo, I always feel myself being pulled to the right. Yesterday in the doctor's office, he made me walk on the spot with my eyes closed. I promptly fell over. Before I did, he asked me which way I felt I was being pulled, and it felt like it was to my right. But Steve was sat watching and he said that I fell straight backwards.


I worry that maybe I'm just putting 2 and 2 together and coming up with 8, but I do have a nagging feeling of what it could be. The thing is the symptoms match both that and it being something like Labyrinthitis, etc. But the only way that the other condition could be ruled out completely is by exploratory surgery. The thing I am wondering about, is a perilymph fistula, which is a tiny hole, opening or thinning of the bone between the middle ear and the inner ear, which then leaks fluid and affect the pressure, therefore affecting balance etc. It's fixable with surgery and most patients recover. But from what I've read (a lot the past week or so), a lot of doctors don't consider it when diagnosing patients with balance disorders, so it's easily missed. Also, it commonly occurs after ear trauma of some kind- apparently even ears popping can cause it. And just before all this began, I had a really bad cold/sinus infection, and I had this tremendous pressure in my ears. It was literally doing my head in, so I spent about 4 days constantly forcing my ears to pop, by pinching my nose and blowing out- which is a really stupid thing to do, but I did it about a hundred times over those 4 days.

I know it could all be me being paranoid and be a complete coincidence, but I just can't help worrying that what if it is that, and what if nobody will consider it? What if I could be 'fixed' and make a recovery, but I don't because someone wont diagnose it? The problem is that the holes are usually too small to show up on either an MRI or a CT scan, and there is no other test to diagnose it, except to do exploratory surgery.

I could just be clutching at straws, and imagining it all, but I've just had nothing better to do than to do major reading up on all of these conditions......

And WHEW what a ramble! Sorry! I just wanted to put that all down somewhere!