Symptoms

[gfmum1]

Hi
Sorry, this is going to be long post! I've only posted on here a couple of times, but having spent some time "lurking" I don't think I've come across anyone who has all the same symptoms as me. I think I have 3 different types of t: the first is constant, high-pitched, and I've had it for years so unless it gets really loud I don't really notice it now. The second is intermittent & pulsatile, I can quieten it by tilting my head a particular way. The third - and by far the worst - is muscular tinnitus of some sort, which thankfully is even more intermittent. I feel very sorry for anyone who suffers that often! Both the pulsatile and muscular t are in my left ear and are worse when I'm tired.

But I also have other symptoms: a couple of times I've had aural fullness, mostly in my right ear; frequent left ear pain; I've had full blown vertigo which has subsided to frequent but less severe unsteadiness; and really the most worrying is that sometimes I feel as though my legs are literally about to give way when I'm walking even quite short distances. This usually coincides with the periods of unsteadiness, and all my symptoms are worse when I'm tired. I often also get temperature spikes. A hearing test showed no hearing loss.

My brilliant GP referred me to an audiologist very quickly; I had an MRI scan yesterday, without contrast, and I don't yet have a follow up appointment to discuss the results. I try not to let this get me down but it's been going on for 2 and a half months now - a very short time compared to many, I know. I think I'm feeling a bit deflated as I really hoped that the MRI might lead to some sort of diagnosis, but just how much can they tell from a non-contrast MRI? And does anyone else have the same collection of symptoms as me?

Sorry for rambling!

 

[glynis]

Hi gfmum1,
It could be something like Menieres with tinnitus,vertigo ,ear fullness, drop attacks can make your legs feel like giving away or other problems.
ENT can rule out things like that....lots of love glynis

 

[gfmum1]

Thanks, @glynis, Meniere's was mentioned by my GP. I wasn't having the problem with my legs giving way when I saw her but there was a suspicion of hearing loss at that stage. I don't think the audiologist has ruled Meniere's out yet, because although my hearing was normal I was told it can come & go in the early stages of it.

The audiologist was a bit vague about what would happen after my MRI, I think he was hoping that my symptoms would all be gone by the next time I saw him - I wish!

 

[glynis]

I have had Menieres Disease for a long time now about 10-12 years.
If you do get diagnosed with it Im happy support you anytime.
We have a Menieres thread also.
For the time being try relax and see what ENT say.....lots of love glynis

 

[gfmum1]

Thanks Glynis, I appreciate it.

 

[gfmum1]

Hmm, I don't think there'll be much relaxing for me (not that it makes any difference to my t or dizziness/balance issues anyway!)
I phoned the hospital today about a follow-up appointment. It would seem that, 2 weeks after I saw the audiologist, he referred me to a different consultant at the same hospital who specialises in balance disorders. Great, except that there is an 18-week wait, which is 2 weeks longer than they quote for a new patient. I was told the audiologist has no plans to see me again about the tinnitus, he had given me the details of a tinnitus support group and seems to consider that sufficient. Copies of my MRI scan will be sent to my GP but for the results it seems I'm supposed to wait until I see the consultant in September. None of that is what I was told would happen.
We desperately need a family holiday as we had to cancel last year's 2 days before we were due to fly because my husband was taken seriously ill, but I can't book anything yet as I have days when I really can't walk far at all before my legs start to give way. We're also limited as to when we can travel due to work/our son's college holidays.
I know there are people far worse off than me, but has anyone any suggestions about how to try to get the hospital to speed things up? Surely I shouldn't have to wait longer than a new patient?
All my attempts to speak to someone other than an appointments clerk today have failed.

 

[glynis]

Sorry your appointment has changed but that now will be the best person to see as sounds like Menieres.
You need your doctor to contact them as only he/she can push for a earlier appointment.
It's hard having tinnitus with the other symptoms on top It really is......lots of love gynis

 

[gfmum1]

Thanks Glynis. I've decided that I'll see if I can make any progress with the hospital tomorrow, failing that I'll try to get a GP appointment for Wednesday to see if they can help.