Absent for a while, not doing very well

dreamdaisy

Hello Anna, you are going through a tough mill at the moment, yes? I am pleased that Mr B will soon be home because that will be a boon for both of you. I have no experience of migraine etc. but I hope you have mentioned them to your GP - there are tablets out there but whether you could take them or not well, that's another ball game entirely. ((( ))) xxx DD

stickywicket

Hello again, Anna. I've been thinking of you a lot while I've been this side of the Atlantic and you've been having a very tough time home alone. You have coped admirably with some really tough times. Finishing post, of a kind, almost in sight. Keep going girl

Mat48

Anna I can't wait until your OH returns to you - it must be terrifying going through all this on your own. You are a brave woman and he is lucky too. Mxxx

villier

Thinking of you Anna (((()))).......................Marie xx

barbara12

Hello Anna
I'm so sorry you are having to go through all this , some people do get everything thrown at them, but I can see what a strong person you are and your hubby hasn't got a dud but such a lovely wife..that is a fighter...(((())) xx

dreamdaisy

Hello Boomer, I have been thinking of you and I hope that you are as OK as possible: I know, that's a tough ask. :oops: ((( ))) xxx DD

DebbieT

Hi Anna,

U have my deepest sympathies & empathy huni.

Migraines are vile, no doubt about it. Do you have cervical Spondulitis?? I ask as the slow building headaches that then turn into a throbbing migraine by the night, almost like pressure, for me are often caused by PsA in my neck!!

I was diagnosed with complex then vestibular migraines as well because I'd had a suspected TIA & was sent to
A & E. I had a ct scan which showed a lesion so I needed an mri to see wot that was, it turned out to be a large pineal gland cyst, I was sent to a Neurologist because of that. She doesn't believe the cyst is connected to the migraines at all, I'm not so sure but which ever the pain & symptoms are there & I need the treatment!!

The complex migraines also cause numbness & tingling at times, I sometimes have the physical symptoms of them & no pain this happens with the vestibular ones too!! Complex migraines can cause full paralysis in their extremes during an attack, luckily not to me!! Scary stuff :shock:

Anna it's no surprise uve been nervous & fearful. I really wish you had someone staying with you in the final week
((((Hugs))))

I don't think asking for a Neuro referral is out of the question hun, I think it's quite practical!!!

Xxx xxX

dreamdaisy

Hello again, Anna. I am thinking of you very much - you're nearly there my lovely, Mr B will soon be home! ((( ))) xxx DD

bubbadog

Hi Anna, How have you been this week, hope the migraines have given you a break, I know how evil they can be! I'm sending you some gentle (())'s.

villier

Thinking about you Anna hope you are in a better place and your OH is home and well.................take care............................Marie xx

Boomer13

Thank you all for your lovely replies. They mean more than I can say.

Mr. Boomer is home, although in shockingly exhausted condition and entirely self-induced. It's much better with him here and after a few days recuperating we seem to be back in our old routine. I have new respect for those of you struggling along on your own :shock:

I finished my second course of prednisone last Thursday and my joints are back to complaining a little more every day, and sadly, headaches and the ear problem is ramping up too. I had quite a bad time with dizziness and lost some hearing so I was really hoping this problem had settled down now Not looking forward to more of that same.

My mri appointment letter arrived: it's in July (not complaining, but because it's local at a mobile mri unit) Yay, I don't have to travel! Not sure what we will do between now and July and I'm sure I can't keep going on steroids so hopefully GP will have a plan? At least OH is here so I can be non-functional if needed.

Thank you for all the virtual hand-holding. It helped very much (((()))).
xxAnna

dreamdaisy

I am so pleased that he is home and you've both been resting. I hope that the GP can sort something out for you because this must be very difficult to live with. ((( ))) DD

Boomer13

Yes, it is DD.

The strangest effect is that I now miss having "only" PsA! My perspective is different now that something else autoimmune has come along. Wishing for pain only, how strange is that ?

toady

Thanks for updating & I hope the time til your mri can be made to speed up and something can be done to tide you over til then. Glad to hear MrB is doing ok relatively speaking and things are ticking along. Not at all strange to wish for your old illness levels back, I used to have 'just' a chronic fatiguey thing and ohhh wouldn't I like that back now, staying in bed & being pale as a ghost wouldn't usually get many volunteers but at least it could be done without interference from drs, taking of drugs, & all the other grotty Ra nastiness. More virtual hand-holding (feel free to have the comparatively normal, less drifty & knobbly scary hand, no offence will be taken ) xx

Boomer13

Thank you toady, I'm not at all afraid of drifty, knobby hands

toady

Good show I always think I'll give people who go to shake hands with me rather a 'turn' as it may not have struck them I have arthritis at that point, so they won't be expecting it, poor things.

How are things now with you both..?

Boomer13

Toady, you are lovely for asking.

Mr. is doing quite well. He has one knee that is troublesome but otherwise seems to have recovered. He's doesn't complain so it's a little hard to tell. Both of us are extremely exhausted after having a house-guest last week, a healthy one who is full of energy It was too late to cancel as he's had a flight booked since before last Christmas. He may never return as we fed him only frozen meals

I had my two-day trip to see rheumatologist. I told him I wanted to put off my starting enbrel until I have my mri. Of course, he hadn't received any reports from ENT doctor so had no idea what was going on. I seem to be doing nothing but sleeping since I got home and I did nothing but sleep and attend my appointment while away too.

Still a little dizzy off and on and ear threatens to worsen, then doesn't, so I think I'm still under the spell of my last course of prednisone. The dietary restrictions are a bore, though a healthy one. Why is it you suddenly crave what you can't have? An annoying fact of human nature. No remaining prednisone-effect on PsA, so I guess almost back to normal just with less hearing.

xxAnna

toady

Hmm, so the various departments don't really seem to be joining up the dots (if you mean the rheumy should have heard from the ENT?) I take it he accepted your wanting to put off the enbrel. I don't suppose you could get a cancellation for an earlier mri.. these things are worth a try given how many people do seem to cancel let alone never turn up. A 2-day trip to see your rheumy is certainly a challenge.

Hope at least that the slightly-threatening ear stays at threat level & that you are right that the pred is still damping things down.

Frozen meals, that's the least a healthy guest deserves. The swines.

Best to you both. xx

Boomer13

Yes toady, I have made three requests for reports to be sent to my rheumatologist to two different people in the ENT office. I should have followed my gut instinct and asked GP for a print copies and carried them there myself. A far more reliable method.

Yes, rheumy agreed to my request to delay enbrel. He actually looked quite horrified, but agreed. No one has been able to explain my ongoing neuropathy and with the dramatic symptoms I had when OH was away, I am quite worried about having early ms which would make antiTNF's an absolute no-no for me. The mri should show ms-like changes, so I'd prefer to wait and, :roll: I've waited so long already. He did up my mtx to the full injectable dose to help until I see him again.

I was going to request placement on a cancellation list for the mri, however, they need you to be able to come in on two hours notice. Since OH needs a vehicle to go to his job and we live nowhere near a bus route, I couldn't guarantee I could be there. Although, you have made me think maybe I should be on the list anyway, just in case it might work out....

Our guest has been warned next time he shows up that healthy to our house of gimps he gets cold cereal and sandwiches to be made by himself!

dreamdaisy

A two-day trip to see your rheumatologist? :shock: I get narked if it takes me fifteen minutes instead of the usual ten to get to the hospital. Crikey.

Oh Anna, of course no-one passed on your details etc., admin. is not vital to anyone apart from us, the patients. We know how important it is that all departments talk to each other about us because we are important. I know we all lack energy but it seems to me that we need to expend some of our precious resources on doing our personal admin. so everyone knows what is going on with us. It's not easy, is it? ((( )))

As for the house-guest, well, any guest worth their salt should pitch in with the catering etc. especially when both hosts are 'under the weather'. DD