Welcome Clareb.

Clare, I wondered if you lived in the UK. Rach, who is on here as well, lives there, too.

I "get" the NHS. I do appreciate the constraints of socialized medicine. HOWEVER, I cannot and do NOT appreciate the a physician's CHOICE to not THINK and ACT when they have all of the power to do so, especially when someone's life is in imminent danger—as I believe your is. There are no constraints on thinking and caring.

I hope a neurologist will understand that any steroid will make an antibody test look normal when it might otherwise be positive. It's a steroid's job to make those antibodies disappear!

I would caution you about reducing your steroid! It can cause an adrenal crisis, where you have severe fatigue, sweats, and other symptoms such as cognitive dysfunction. And if you have MG, reducing it might bring on an MG crisis.

MIP and MEP don't reflect narrowed airways, but reflect a neuromuscular cause for poor breathing. How did they conclude that you had narrowed airways? Do you have asthma, too?

I've had low B12 and D. They did NOT cause my breathing to tank. Oy vey. B12 is necessary for the production of acetylcholine and might have a slight effect on muscular weakness. If you're deficient in B12, you can get Jarrow Forumula methylcobalamin on the Amazon UK site.

Unless someone is monitoring your O2 saturation while sleeping, there is no way to know if it is tanking. My resting O2 after three days during my MG crisis was 94%, however, my O2 while sleeping was 66%!!! Not good. You need that assessed right away.

Is the "recovery position" sitting up? It might help to sleep in a recliner, if you have one.

If you are shivering, you are probably hypoxic (not enough oxygen). Unless it's a blood sugar issue. Is that under control? And I wouldn't rule out an issue with drugs or an interaction of them.

You need more specialists: Pulmonology, neurology, and possibly endocrinology.

I'm really sorry you're going through so much. Lupus is hard enough to handle. Just work with your rheumy to get the care you need, but please don't rule out heading to the ER/hospital.


JJ, That's sweet of you, but tell that to any of the neurologists I've seen. I doubt they'd share that opinion.

Annie

Hi Annie

Annie, thank you once again for your reply. Sometimes I think we lack the courage of our convictions to demand a pro-active approach from our Doctors. Also, you get used to functioning at a sub-optimal level after a while and become accustomed to new physical constraints. I have just been sent an appt to see my Rheumatologist on Saturday (?) and plan to take a list of points to discuss. I think I probably don't fit the text book picture of an MG sufferer hence the Dr's reticence but I also have Lupus and have had for years with no antibodies whatsoever!

The shivering is strange, no-one else seems to get this. It's not hypoxia nor low blood sugar etc, it starts with my cold intolerance and means that I start shivering at temperatures that wouldn't bother other people. If I can't warm myself up quickly ie if I am out watching one of my children playing rugby then my muscles will quickly exhaust causing my body to turn to jelly and make my already tired chest to be sooo much worse as the day goes on. My O2 sats are always good, don't know how I manage to keep them so high - probably because I was so very fit before things started to nose-dive.

The recovery position that I mentioned for sleep is a certain way the emergency services position you if they want to keep you flat whilst also keeping airways open etc. it's kind of on your side but tipped slightly forward. It is literally the only way for me to breathe by the time I am tired and in bed.

I love the NHS and have had 2 desperately ill babies in the past and they have had hundreds of thousands of pounds spent on them to keep them alive. However, for less immediate needs, the process can be very slow, inefficient driven by keeping costs down. I have tried private medicine with a resp consultant and that was worse,so much worse. What a waste of money.

I will let you know how I get on at my next appt on the 13th!

Thanks again Annie. Take care. Clare