RecipeForDisaster

So interesting. I have features of both, symptom wise. I am easily startled and it can be dramatic - but I’m calm and drowsy. No one will let me try clonidine, partly due to my low BP - but I can’t sleep. I’m really hoping this is all due to some antibody or autoimmunity and IVIG will help (hurry up!).

It’s so bad, one of the worst features of my SFN! It keeps getting worse and is like whack a mole. I scratch one place, it’s relieved, then somewhere else totally random starts itching, and this repeats… nothing helps the itching, other than finally scratching the itchy part. If I don’t, it keeps getting worse and worse. I was surprised that I tested as unable to detect change in temperature in my feet and legs. I had a negative/inconclusive biopsy years ago. I think part of it may be technique.

Me too. I was sure those levels would be through the roof with how I feel. Nope!

Yes, I have an ear clip on my left ear. I’m already pretty calm, but my heart is not, without beta blockers. I used to use exclusively non-drug solutions, including for my other issues, but I’ve gotten so much worse that I can’t do without lots of drugs. I don’t even do okay ON the drugs(and sleep, ugh, that’s a huge problem). It’s a necessary evil, unfortunately. I am supposed to start IVIG, and I’m praying that will be my solution. I used many supplements and herbs before I got so much worse.

Do you find the vagal nerve stimulation helpful? I thought it was lowering my HR and palpitations, but then I got worse and it didn’t keep up. Is it helpful for that or other stuff for you?

I start to lose my hearing when I’m going to pass out, or when I change position these days!

Yes, that makes sense. So, I take one in the morning and one at night. We are so hard to figure out. During my exercise stress test, the PVCs decreased a lot. When they first hooked me up, I had so many that they immediately referred me to an EP (I had a few cardiologists but not one of those). I have more PVCs after I eat, and I’m careful not to lower my HR too much. I like it between 60-70 or so if I can.

It was a cardiologist in Boston who suggested I try it. I was hesitant. It’s strange in that it actually seems to make you more alert vs. tired like metoprolol does for me. But yes, there are so many different ones to try. I don’t know if all of them help with ectopics - I don’t think metoprolol did for me. I also had a lot of bigeminy and trigeminy. I seem to get more of those if my HR much under 60. Which would be if I took more of a beta blocker - that’s one thing that prevents me from going higher.

I can’t have non-selective ones due to my asthma, so I’ve only tried these two. Acebutolol doesn’t make me tired, and has more anti-arrhythmic properties. I was offered flecainide and an ablation, but I was cautious.

Mine don’t seem to have a time of day pattern, but I had an average of about 1800 a day if I remember right. I’m on metoprolol at night and acebutolol during the day. The acebutolol seems to help quite a bit. IV fluids help, too. I use taurine to dampen the discomfort as well.

Ice cream is a major favorite of mine, too. I’ve been making homemade brownies to serve under ice cream, topped with hot fudge. When we’re out, we chase super special ice cream.

Lyrica helped my TN quite a bit, along with carbamazepine. But I don’t think it has helped my neuropathy (unless the TN is from that). My feet burn badly and I always have buzzing/vibrating in my legs. Lyrica is why I’m not underweight anymore, although since I’ve been doing worse, I am losing again. It caused the doctors to stop worrying about my weight loss, sigh… it put about 20% on me on its own. It doesn’t matter if I don’t eat!

Ugh, yeah, I did not enjoy it. The copay was $150, too. I was told that I could try IVIG if it was positive for SFN. I was also told that Lyrica should help it, but it hasn’t for me. I take supplements that should help, too. I don’t have disability, though. It turns out that they did not actually order it or get a denial before I was told all this. I guess the secretary misspoke, which is kind of maddening. So far, I have 2 other doctors who have said they’ll help me with insurance qualification if needed. They really want me to try it, because there is not much else out there that might help! The infusion pharmacy is motivated to help as well. Fingers crossed…

Like I always tell my doctors, I might be able to deal with this if I’d stop getting worse. My quality of life isn’t something most anyone would put up with, and it just keeps getting lower. I need the basics - sleep, walking, eating. I really don’t have those now. Having stuff canceled after you’re all ready for it is horrible. I won’t give up on this. There is very little else I can hold onto. NIH undiagnosed diseases program is about it, and that is not super likely.

I mean… IGG vs. FGFR3… ANA positive in 2 ways… other gamma globulin abnormalities… I sure hope they are putting that in their documentation! I finally got through to the neurologist's office, and they didn’t even submit the PA yet! Seriously? Thanks for scaring me so much. The secretary did not have to read me that cryptic message!

I will fight if I have a choice. I happen to be getting much worse overall in the last week or so, so I’m highly motivated.

I’ve been through it with other things, meds and tests. The communication breakdown is a lot of the problem here. I never heard from the ordering physician or his staff. I really don’t think there was a denial.

I’m honestly not sure they even tried to get it approved. It sounded, third hand, like they just gave up before they started. I am still waiting to talk to someone. I wrote to my big city neurologist as well, in case he is better at this. I would definitely appeal it. I would be happy to get those specifics! Good idea on the supervisor. I tried that before with her and they were like "what do you want us to do?".

After the doctor told me he was angling for IVIG, and talked me into the biopsies, he said he wanted to order it once we got the positive results back. It’s been about 10 days, and I finally found out that they have a message there that "that’s not enough of a diagnosis to get it covered", which is a shock to me. I would never have done the biopsy and I had a glimmer of hope about this. I keep getting worse and am barely able to push through everything - not sleeping, too nauseated to eat, losing "time" when I stand even slowly (plus hearing and sight), just feeling horrible, plus the neuropathy which is constantly worsening. The SFN was probably my only qualifying diagnosis, although I do have HYCH, positive ANAs in 2 ways, immunofluorescence, abnormal subclasses and beta globulin, etc. I wanted this to help with my suspected antibodies to alpha, and autoimmunity, not so much the neuropathy. My insurance is pretty easy to deal with and covers most anything. I don’t know how hard they tried, if at all, but my new nurse case manager is not exactly a go-getter and hasn’t done anything to help, despite my pleas. I don’t know what to do here - any advice?

Haha! I love my cats, but they seem to challenge me on purpose.

I’ve been sick for over a decade. I’m not totally diagnosed or treated yet. Most tests and specialist referrals are scheduled a year out (this has been since the beginning, well before COVID) and it’s in Boston, so I’m not sure moving would help you that much. It stinks, but there are not too many autonomic labs or specialists. Cats have made me pass out, too.

HYCH is hypocarbic Cerebral Hypoperfusion, which is diagnosed on tilt table test. I had a severe decrease in my brain circulation when tilted, but I didn’t come up positive for any of the "normal" TTT diagnoses. The trigeminal neuralgia is managed on medication now. For five months, I didn’t know how I would get through life. I have mostly type II which is continuous pain. I do get face shocks, too. I am not eligible for the most successful type of surgery. My BP has been documented at 72/40 and I’m sure it’s been lower when I’ve collapsed or passed out. I use metoprolol at bedtime only, and I would not be able to sleep without it due to the pounding. I take acebutolol in the morning, and it does not seem to affect my BP. Both are pretty low doses, though. A-fib stinks! I just saw my sleep specialist yesterday. She does not know what to do with me. She does think my broken sleep is a big problem. It makes a huge difference in how I feel and function. I often sleep just a couple of broken hours a night. It’s awful. I have taken magnesium for many years. My doctors are trying to send me to the NIH undiagnosed diseases program, but they only accept 10% of patients, and traveling is next to impossible for me. Mayo didn’t want me! I did the EMG a long time ago. Luckily my current neurologist said I just needed the biopsy (which I didn’t like, either). My swallowing is not great, either. I also tested negative for all of those specific diagnoses like lupus, RA, paraneoplastic (although I do have positive immunofluorescence). They should find MSA quickly if it’s present. Good luck!

Thanks. No word on starting yet, but it’s only been since Friday!

I could do this, but all of my flowers, vegetables, belongings, AND the mower would all be ruined. LOL. It’s worth it to me!

I use a non-self propelled push mower. It is time to use it! It takes me 4 miles of walking to get it done. I’m having a rough few days, or getting worse, so I’ve been putting it off. I drink a lot of broth and make a cold hydration solution for hot weather. It doesn’t help me all that much, but I like it. Vascular is one specialist I don’t have. I think there are 4 neurologists and 5 cardiologists, though. All with different sub specialties. Is that a Frank Zappa reference? Haha! Good luck!