Hi it’s been a while. I’ve been a little stretched thin. Lately these days have been a bit harder (extra one on one attention is needed and jealousy has been more prevelant). But we constantly push forward, reminding them that we have more than enough love for both and know that the ultimate goal is to help our two children become less insecure, feel safe/loved, and it’s a process; some days harder than others.
I am continually seeing a rheumatologist and she is so reasonable and I’m thankful for her.
I think but I’m not sure that other rheumatologist has added fibromyalgia to my lot, but am taking ldn from her. Helps my brain fog and memory. I’ve been able to keep appointments straight but doesn’t help my joint pain.
Hydroxy helps with fatigue and energy, and seemingly these episodes or flares? Ooh, and vertigo! Not sure why? doesn’t seem to help with stomach or joint pain as of yet. She said I’m coming up to the plateau so I’m a little sad about that part.
Gabapentin helps keep severe burning and pin prick intensity down, and actually increases appetite. When I dont take it, I can’t eat very much before feeling full. Might possibly help with helping bladder symptoms, I think it could be worse.
Didn’t realize that Hydroxy doesn’t come on an automatic refill so waited till the last minute to fill it and have had some symptoms come back: leg/ calf muscle pain, more fatigue, and having an episode of feeling like utter crap and feeling warm, body aches etc. over the weekend, but it may have also been the stress from the weekend.
I am diagnosed as hypermobility syndrome until I see a geneticist and get formally diagnosed. Invitae showed a VUS on Adamts2 but it wasn’t in the right place and I definitely don’t fit the profile for eds type vll I believe it is. I am hoping and holding out for this geneticist. I’ve finally been referred to gastro doc, dermatologist, and the geneticist.
Also interesting fact, I’ve have not been tested for the sensory neuropathy panel. I believe it is antibodies TS-HDS, and Fgfr3 ? I may be saying the last one wrong. But in the US they tested in only a few places. I think I understand better why my neuro muscular doc thinks my ganglioside antibodies are cross- reactive; it’s because my emg is normal 🤦🏼♀️Thank you everyone who talked to me about it. I show symptoms and signs of something more serious but until my emg starts showing it, she will only take note.
Also, rheumy said my rashes may may not be autoimmune.
I’ve been told LDN lowers antibodies so I stopped taking it and have picked up my Hydroxy prescription but haven’t started taking it yet as I was hoping it would give me a fair shot with this sensory neuropathy panel antibodies test. I think this is probably a reckless move as my legs are hurting and tingling alot. I keep going back to just wanting to know and can’t believe I wasn’t tested sooner.
Hydrogen breath test update
New and as yet undiagnosed 
sore feet possible peripheral neuropathy.
Dr Referring me to Rhematologist. Keeps mentioning Lupus but I have no symptoms
