Absent for a while, not doing very well

Boomer13

I'm not having a good time at all. Trying not to get overly anxious but my hearing/ear problem is turning out to be severe and possibly neurological. I'm having a flare of other neurological symptoms too and my GP is thinking I may have something additional to PsA. I have thought this too but it's been quiet since Dec, so I had been hoping it was under control. Hopefully I will receive a diagnosis now.

I'm finding it hard to follow the forum stuff at the moment so I think I will be off for a little while. I've been put back on a good dose of pred to hopefully settle it down.

I'm struggling without OH at home. Seeing GP on Sunday and hopefully will be fit in with the ENT doc on Monday. The pred can kick in anytime.

hileena111

Hi
I'm sorry you are having such a rough time......I do hope you get some positive news from your doc
If you disappear we'll know why.......we aren't going anywhere....well not for long We'll still be here if you pop back in

Love
Hileena

villier

Sorry you are having it so rough at the moment Anna, having a neurological condition myself it certainly is not a lot of fun. Hope your appointments with your GP and ENT consultant gets you some answers, if possible please let us know how you get on, will be thinking of you ((((())))).......................Marie xx

dreamdaisy

Oh Anna, I am so sorry to read this. You go and do what's best for you, don't fret about trying to keep with the forum because we will still be here when you return. I am not surprised that you are struggling without Mr B but we're half way through now, yes? ((( ))) xxx DD

destiny0321

hi sorry to hear you are having a rough time at moment,
i have only just come back on last few days i nearly had a breakdown over christmas plus my asthma is playing up at moment as well.
i do hope your oh is home soon. thinking of you sending you
((((((((((((((((hugs)))))))))))))))))) take care destiny

toady

Sorry to hear you aren't doing well Boomer, the worsening ear problems must be a very unwelcome & nasty added element to your PsA (+ possible 'other'), hope you get some relief from the pred, & can settle while you can see the ENT etc. Hopefully your 1 or 2 helpful friends have been able to pitch in a little and help tide you over til the return of your OH (who I hope is doing ok with family too). All the best while you aren't around. xx

dibdab

Oh dear, so sorry to hear how rough you're feeling. Hope the pred does its stuff really quickly. sending hugs {{{{{{{{{{{{{{ }}}}}}}}}}}}}

Deb xx

DebbieT

Hi Anna,

I can't believe the rough period ure enduring at the moment wot with ure poor hubby, ure continued poorly controlled PsA & these undiagnosed neuro problems!!

I've been very lucky that I was swiftly sent to a Neurologist after the brain cyst was found ... I was diagnosed with complex migraines which was the cause of the left sided numbness/tingling & since I've also got vistibular migraines too, they involve vertigo & neausea!! None of these are pleasant but knowing wots wrong makes it a little easier to bare.
I do hope the ENT can figure out wot exactly is going on & if not then refers you on to a neurologist for further investigations!!!

Take wot ever time you need huni. I'm so sorry I haven't been here for you but the beauty of the ACF is that somebody is always here!!

Look after & be kind to ureself.

((((Hugs))))

Xxx xxX

Numptydumpty

I too am sorry to hear this Anna. Things are always scarier and harder to deal with when you're on your own.
I hope the pred helps.
Take care, ((((()))))
Numpty

stickywicket

Anna, I can only echo what the others have said. I don't often do this but I do feel for you very much so hold on tight. (((())))

celebrationb

I cant get on to the forum much myself, sending all my best wishes to you.
Having a rough time myself so thinking about you.
lots of hugs to you

dreamdaisy

Hello my lovely, I hope that things are at least a little on the up for you. ((( ))) xxx DD

Boomer13

Thank you very much for all of your kind supportive messages. Who would have thought I would find such a terrific virtual family.

I've always taken balance and hearing for granted; wow, you miss them when they are not working properly! My next appointment with ENT guy is Wednesday and will be getting an mri, hopefully soon. The pred is helping somewhat; I haven't had a really severe episode of whatever-it-is in two days. I'll take the worst PsA days/weeks over this.

I will admit to being terrified, but somewhat calmer the past couple of days. I have a wonderful GP, she been great.

xxAnna

villier

I am glad the pred seems to be helping a bit Anna, I live on my own and know how frightening things can be especially when there is no one around. Hope your appointment on Wed gets some answers and you get your MRI soon.................take care...................((((()))))..........Marie xx

Boomer13

Thanks Marie;

They are horribly scary and that much worse when you are alone :shock: . I have a new appreciation for OH and everything he does when he's here. Somehow I found a good'un. Unfortunately, I think he got a dud with lots of problems.

Numptydumpty

Sorry Anna, I disagree, I think your OH got a good un as well, and I'm pretty sure he knows it
I'm pleased the pred is helping (it does have it's uses) and hope it continues to do so.
Take care, (((())))
Numpty

villier

Aww Anna, I totally agree with Numpty we all have our own individual problems it is what is in the inside that matters not what is happening on the outside, you are a lovely warm caring person, so my reckoning OH has a good 'un as well .....................Marie xx

dreamdaisy

He got a dud? Don't be daft, he has a courageous and resourceful wife - what man could ask for more? I hope the steroids are now making a far better difference to matters but I agree, the not-having-your-balance- thing going on is far from pleasant. I am thinking of you and I hope you are doing as OK as possible. DD

Boomer13

:oops: I was having a very low day....Too many things happening at once. But hey, I'm good at starting over. So much practice :roll:

I am unsure if I can really update my thread, I don't know much about what is wrong (except I don't like it ). "Secondary endolymph hydrops" but not quite Meniere's disease. The ENT doc said I could have many things causing it from neurologic disease, vasculitis, tumours, autoimmune inner ear disease, etc. Quite a list! I had something dreadful happen last week that he thought might have been several seizures? but, obviously ENT guy can't diagnose these things. Must wait now for an MRI and,

a) try not to worry
b) prevent anymore hearing loss or disturbance to inner ear.

To that end, I've been prescribed diuretics and been told to avoid salt, sugar and stay hydrated (I do these anyway )

I don't think I will be starting antiTNFs as promised. Sigh.

Today, I'm listening to music and trying to enjoy my remaining hearing. Hopefully, I won't lose any more of it. And, the sun's out

Thank you lovely people,
Anna

Numptydumpty

((((())))) x
Numpty

Megrose489

You're really going through it, Anna. Be kind to yourself and take it easy.

Meg

villier

Oh dear Anna you are gong through it at the moment, gosh, half of the stuff you mentioned I have never heard of let alone understand. I am keeping my fingers crossed they get to the bottom of it quickly and get it treated, you look after yourself you know we are here any time...............take care..............Marie (((()))) xx

DebbieT

Hi Anna,

I'm sorry ure left so unsure of wots going on
((((Hugs)))) I hope a virtual hug may help, even a little.

It seems SEH responds best to a rigid regime regarding meal times & drinks of water etc I'm glad they've put you on a diuretic already as its meant to push the fluids thru the kidneys & that will help keep ure liquid content more stable, which is the goal, I believe!! The other good news news is the hearing loss isn't as severe as it is with Minieres, it's more of a stabilizing process until they figure out the underlying cause & deal with that!!

I have vistibular migraines which cause very similar symptoms to ures, it's vile!! I've been put on a high dose of topirimate (migraine preventer) & Domperidone to combat the nausea & vertigo but I have to take a triptan wen I'm struck with it, nothing else helps!!

Will you be referred to a Neurologist now hun??

I hope ure helped really soon & that the SEH measures assist you asap. How long til hubby returns?

Please be kind to ureself!! ((((Anna))))

Xxx xxX

dreamdaisy

Oh hon, I am so sorry, this is SO not needed at the moment. Cosset yourself as much as you can - the sun is shining here too, I have the windows open and the birds are chirping away. DD

Boomer13

Hubby is home in one week. I'm feeling pretty shattered with the dizziness, headaches, etc and that makes me feels so vulnerable when I'm alone. But I made it through last week, one more to go.

Debbie, I'm having some very severe migraines and a constant headache that gets worse all day. Migraines have left me alone for a couple of years and now are back worse than ever. It's at night that something is happening that is seizure-like, and I'm afraid now to go to sleep!

Doctor did not mention a neurologist referral but maybe that will depend on the mri result? Thanks for the info Debbie, I'm following the instructions regarding no salt, sugar, small meals frequently, etc. and I bumped up my rheum appt to mid-April so I can get his opinion.

Were you diagnosed by a neurologist Debbie? I've never had any testing regarding migraine or seizure but it runs in my family.

Sadly, I'm missing my old painful problems.

toady

Thinking of you with hubby nearly due back, hope you will not have to wait too long for the mri and something useful arising from that hopefully.. xx