Is hospitalisation an option? (UK)

[SpinachHands]

Have you heard of Dr Abbi Lulsegged? He is now a private only endocrinologist with special interest in fatigue and unexplained conditions..based in London but does telephone consultations..30 minutes..25 then 5 minutes for dictation. There's not a long wait to get an appointment maybe two weeks typically and sometimes less if cancellations.

I hadn't heard of them before but this is really useful thank you!! Their next follow up with their private LC specialist is still 6 months away so if the medicines she prescribed don't work, we don't have any other way of trying other alternatives until then, so it's great that he has such a short wait!

Has he tried Ivabradine for the autonomic dysfunction? Extra salt/ slow sodium tablets? Calf compression stockings?

No to the ivabradine, yes to everything else. I think I asked their GP about ivabradine but she said she couldn't prescribe it without a cardiologist consult. She's put a referral in for my partner, but apparently you have to go to appointments in person, which is impossible for my partner, and someone in my local ME group said her daughter's been on that same wait list for 2 years now, so not very hopeful for that.

I forgot to say, has he tried any caffeine during this time

We did consider it actually, but their heart can be really temperamental and we were worried it could trigger sympathetic overload. Oddly, after a really bad day my partner asked for a cigarette, and it actually improved their symptoms for a bit? I imagine due to it activating nicotinamide receptors, which is the theory behind the nicotine patch test.

Has your partner had a 24 hour urine test?

I believe the private LC specialist is putting that in her letter to our GP, so just got to wait for her to send that through.

 

[crussher]

I'm sorry that your partner is suffering so very much.

I was once hospitalised with some severe ME symptoms (extreme thirst) and I was treated like a psychiatric case. It was an humiliating experience though it only lasted 5 days.

I have a friend who went into hospital back in February. She has deteriorated now to the point of very severe ME and I fear for her life. She has received no understanding in relation to her ME.

There is some kind of in-patient specialist ME unit in Norway for severe ME patients where the team is 100% clued-in. Unless it was something like that, I wouldn't myself want to go into hospital if I were suffering from severe ME. If there were another non-ME problem that merited attention, I would go. But otherwise I'd be very cautious.

 

[Kes]

You're welcome. That is excellent that his M.E. seems to have improved. I know at the moment he's not able to experience the benefit of that but it's a sign of hope.

I should have said that the exception with appointment times is when he's on leave and so last summer it did take me a little bit longer to get an appointment when I tried in late July. If prepared to pay slightly more he does have Saturday morning appointments which I opted for last time.

He used to work v closely with POTS specialist Dr Nick Gall at Kings hospital. Dr Gall does do private consultations but not sure if he does telephone appointments as he normally takes pulse etc. That said he may well offer that option. I'd say he's the kindest doctor I've ever seen. He kept trying things for me even though I'm impossibly hard to treat as I can no longer tolerate medications or supplements for past 8 years or so. Had M.E. for 25 years. He kept me on as a patient way longer than I ever expected.

The Ivabradine may potentially help your partner but I'm wondering if it could be a catch 22 situation. They may in theory allow him to try it empirically but they are twitchy about not supervising the first dose. It causes the heart rate to drop and I think they fear in cases someone has it drop too low. That has never happened in the Kings hospital clinic to my knowledge. There may be some kind of workaround for this problem, I just don't know.

Yes I think your theory regarding the cigarette makes sense and also it does sound like caffeine is probably not a good idea with risk of sympathetic overload.

It's helpful that you've shared more information. Even cardiologists aren't good at recognising p.o.t.s. unless like Dr Gall for example they're a p.o.t.s. specialist. and even with supposed p.o.t.s. specialists I would be a bit wary generally. I prefer to get a recommendation. So I doubt the hospital would be the right setting to get help because he'd have a catch 22 because without the testing they probably wouldn't believe he had p.o.t.s. for example and if he saw a cardiologist they tend to reach for beta blockers which worsens fatigue typically. I'm sorry to ramble. There are quite a few other drugs available to try for dysautonomia but may require a specialist to unlock them. Wishing you both well.


P.S. I realise your partner is in a miserable situation at the moment. I adopted a practice about 4 years ago of trying to look for little things in my day to be thankful for for at the same time each day for a minute or two. It has helped but again I realise that's a big ask when someone is as incapacitated as your partner.

 

[Kes]

P.S. A friend of mine sometimes uses nicotine tablets but then I suppose they could lead to other issues if used too much. Maybe used occasionally it might be okay

 

[Tammy]

I always try my best to be their advocate for their wishes, no matter if I think differently.

This is everything. Thank you for doing that. The patients wishes should always be respected and taken into consideration no matter what anyone else thinks. I respect this so much.

 

[YippeeKi YOW !!]

Am tagging in @Countrygirl , whose knoweldge of UK hospitals and the viability thereof is encyclopedic, and whose willingness to fight for patient's rights therein is heroic beyond measure .....

 

[SpinachHands]

One update is I asked their GP if hospital was an option, and she said it would only be through either urgent care/A&E if their symptoms were deemed life threatening/needed immediate treatment, or through a clinic if my partner needed treatment or tests that couldn't be done at home. So, it's kind of good news/bad news that my partner shouldn't need to be hospitalised unless something urgent crops up, but also it means we have to wait on clinics for any treatment. The only clinic our GP has referred them to is cardiology, and apparently someone in my local ME group has been waiting 2 years on that list....
So seems like private treatment really is going to be the best way, it's just up to us/me to find the right one.

(On a crappier note, my partner let their GP come to do a home appointment for the first time since last December, since they needed a potential ear infection looked at, and she was AWFUL. It's like she hadn't been listening to a thing I've said the past seven months- speaking loudly, asking why my partner had an eye mask on, asking if my partner could "stand up for just a sec", asking loads of questions....so, she's not allowed back, and after I have a talk with her, if she still can't seem to get it I'll be looking at finding a new GP. It also maybe helped show my partner why I've been so against hospital this whole time, they thought I was being overly pessimistic, but if this is how a doctor that's been treating them for a year acts, now they can maybe see how hospital doctors and nurses could be harmful to them)

 

[Viala]

It would be worse than that because your partner would be there alone, doctors still behave when someone else keeps an eye on them.

Isn't it strange though that it is very common that doctors behave so badly and completely unprofessional? There are numerous yt videos about medical gaslighting and hundreds of stories like that. There is no other profession that would allow such abuse and mistreatment, yet the people that are supposed to help, behave like monsters. I said it before and I'll say it again, this should be criminalized. Something is very wrong with medical industry.

 

[MecfsPatient]

Do you have a GP who may be willing to speak to an ME specialist about their case? From my experience, ME experts can often be willing to consult with other doctors even in different countries and sometimes there are things that can be done. Wishing you luck, this is so scary