Another obscure diagnosis for the collection

[Sarah Tee]

I haven’t posted for a while because it looks like I have another obscure condition to wrestle with: myotonia congenita.

I now have four conditions that are difficult to get diagnosed and treated, and for which there are no specialists nearby (or perhaps no specialists at all in Australia).

I’m afraid I am feeling a bit down about it all. Another diagnostic odyssey, arguing with sexist doctors, exhausting myself travelling to Nearby Capital City, trawling through support groups and PubMed to find info? Ugh. I guess at least I know the drill by now!

In good news, I am having a positive response to low-dose naltrexone (LDN). I am not sure why, as apparently it usually takes weeks or months to have an effect, except for that on pain, and I don’t have pain. I am getting an immediate effect with each dose that then wears off when the dose wears off. Not complaining! I do still have side effects from it – hot flushes waking me up, feeling a bit vomitous, crampy pain in abdomen and thighs.

The positive effect is an improvement in my physical and mental symptoms of low blood flow. Still nowhere near normal, but have been able to prepare simple meals, which I couldn’t do before the LDN. I am taking 0.5mg twice a day, not that dosage seems to mean anything as everyone seems to need different doses and research is close to non-existent.

It’s possible the LDN is doing something with endorphins that’s doing something with vasodilation, or else it is helping my autoimmune stuff unexpectedly quickly. Or it maybe something else entirely.

In bad news, I had an attack of BPPV that laid me low for a few days, and also cannot find a sensible dentist within cooee to fix a cracked tooth. Looks like I will have to pay mega-bucks to get it done under general anesthetic … but people with myotonia congenita have to avoid certain anesthetics. Let’s hope they can cope with that in this backwater.

Hope everyone else is okay and sorry for the whinge.

[Pistol]

@Sarah Tee I am glad to hear the LDN is making a difference! One little victory at a time is still winning!

[bumpkin]

@Sarah Tee 

On 11/4/2024 at 6:52 AM, Sarah Tee said:

arguing with sexist doctors

Sadly, women's health has not come terribly far from the days of blanket hysteria diagnoses.. Hang in there and keep advocating for yourself, you know your own body better than anyone

And that's right, you know the drill and at least your wealth of experience with researching should serve you well in the quest for info on the myotonia congenita, it's the last thing you needed on your plate right now but you understand the importance of rationing your energy and I think that tends to inform our approach to these things, we become more efficient for it, you are very skilled at digging around online!

I don't know if I've mentioned it before but I know I heard of some fibro patients having to divide their LDN dose to twice a day, as you stated there's not very much research on it to know what's the best course for different patients exactly but it's worth looking into whether that could help. That endorphin boost was a game changer for me while I was on it though. Wish I could go back to it but my brain chemistry isn't the same as it was back then. I think the only side effects I had were the crazy vivid dreams and some gut stuff but it went away over time, hopefully the uncomfortable side effects subside for you soon. I was on it for about 2.5 years but reached a point where I could no longer afford it.. in hindsight I should've foregone my little nootropics experiment and gotten back on the LDN instead. Too late now though lol

I recently heard of an ME/CFS caregiver in the US who mentioned getting a custom protocol from someone based in Australia, so hopefully there are actually more knowledgeable practitioners out there than you happen to know about just yet, they may not advertise heavily and I imagine that's for good reason, might have to get creative with the search for them

Good luck with the dental work too, I've been hesitating on mine as well for the anesthetic concerns, ME/CFS patients aren't supposed to get the epinephrine either and the doctors and nurses don't all have a clear understanding of which ones contain it or not 😔 They gave me the lidocaine before the FNA thyroid biopsy after telling me there would be no epinephrine in it.. ohh, there was though, nervous system bugged, it was a bad time 🙁

[edriscoll]

I'm so sorry to hear you are going through so much more.  Don't ever apologize for feeling what you feel - this is the place for it.  

I can hear that you are feeling low, but you are right - you know the drill and there is strength in that.

I hope you continue to feel better on the LDN and you find someone to fix the cracked tooth.  bumpkin is right about the epinephrine.  It is definitely something to be sure about before they give you anything.  I have had the unfortunate experience of being told the dental team was using something without it only to find out they were very wrong.  It was a pretty awful experience for all involved.  So it is worth checking into being that it is so very common in the dental field.

Keep digging for the info you need, you'll get there and keep us posted.

[bumpkin]

11 hours ago, edriscoll said:

I have had the unfortunate experience of being told the dental team was using something without it only to find out they were very wrong.

I think the solution I later learned about between this forum and another doctor I mentioned it to recently, is that the anesthesic accommodation requested needs to be for "lidocaine without epinephrine", and that the act of simply asking what they're using and them telling you "oh it's just lidocaine" is what will get us lidocaine with epinephrine in it (because from what I understand, the nurses see it labeled as 'lidocaine' with no mention of epinephrine on it, but ya best believe it's got epinephrine in there anyway, unless it specifically says "without epinephrine")

Seriously careless naming convention they've got there