Waiting continues

[TeaandToast94]

Just a check in from me!

I've been on annual leave this week which is much needed but I caught that horrible cold that's going round and it's completely wiped me out. In fact, the past 4 days I've had the worst upset stomach which as soon as I think it's better, then comes back. I can feel I've lost weight - again. Every time I feel like I'm doing good something then hits me again and I'm pretty fed up of it going in circles like that.

However all the time I've felt this sick I've also not been able to take my gabapentin. the tablets aren't the smallest and when I feel like I'm about to be sick I just cannot stomach taking them. I've not noticed any change in being off the gabapentin, same as I didn't really note any change being on the gabapentin. I do plan to restart it when I'm feeling better and can tolerate it.

I emailed my consultant's secretary the other week to cancel an appointment I had with him. I said very politely and with tact, that as a private patient I can't keep throwing money at him and at various investigations that have no guarantee of yielding any answers (he wanted me to have more bloods and ultrasounds which would have been another fortune going private). I also said that I haven't really found this doctor to be the most helpful or understanding so I would appreciate copies of any investigations I've had done under his care and I'll go elsewhere if I need to. I'm waiting on the Behcets centre to see me, and I will choose another doctor if necessary.

Anyway, his secretary never replied which is extremely unusual for her as I normally get pretty instant responses and she is very helpful. But I got a letter from the hospital for an appointment for the ultrasounds my rheum wanted me to have, but as an NHS patient. So the scans will be in a couple of weeks. The only thing I can think is that the secretary has discussed my email with the doctor who has managed to get me that scan appointment but will still want to continue private consultations.

I have emailed the behcets centre to chase my referral but their response says that the wait for an initial consultation is 5 months now! and that's if their consultants feel an appointment is even necessary as of course all referrals are vetted. So more waiting as it looks like I'm still in the queue for a consultant to even read the referral.

I guess I'm just feeling a bit sorry for myself, sick of feeling so rubbish, sick of being caught in this lengthy wait time. So I guess we wait and see when Behcets centre can see me and what happens at this ultrasound appointment. It's of my hands and wrists so I am really interested to see if there are any signs of inflammation noted there.

Anyway, I've released a big sigh, I'm going to lay on the sofa and watch something good I think.

[PMRpro]

Are you sure this is just a cold? Covid is now presenting more like a cold than anything else

[TeaandToast94 in reply to PMRpro]

Hi yes, 2x tests negative and I need to do LFTs regularly as well for my job.

[Sarahmac8312]

Could Gabapentin be causing the stomach issues? I had the same with Venoflaxine

[TeaandToast94 in reply to Sarahmac8312]

I did consider this, the only thing that’s making me think it isn’t is that I’ve been on the gabapentin for a few months now but maybe it’s edging in to long term use which is causing me issues and I might benefit from some lansoperazole or something. I’ve been put off speaking with Gp due to appointment wait time but it might be helpful to seek their opinion, thank you

[TeaandToast94]

Update! Today I received a letter for my appointment at the Behcets centre in London. It’s in March but I’m so happy to just have that date in place, feels like a weight has been lifted! I’m also waiting in anticipation for my ultrasound on Saturday to see the findings of that.Pain isn’t brilliant right now, but I feel brighter knowing these appointments are on the horizon xx

[BabyOleg in reply to TeaandToast94]

Great news! Let’s hope the time goes fast for you x