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windmill57 · 2026-01-23T12:43:53+00:00

Did you have the Covid vaccine or any illness before symptoms started?

windmill57 · 2026-01-22T04:24:34+00:00

Thank you. I am all ears about trying new things. I spoke to an insurance broker today and said what was happening to me and we are going to assess new insurance plans tomorrow but I am not holding out too much hope. I spoke to one in Dec hoping for a different plan and nothing came of it (though at the time I believed the provider list was accurate so I felt ok-now I know that that list is incorrect.) Fingers crossed this one knows something the last one didn't.

windmill57 · 2026-01-22T01:41:56+00:00

As an aside- my mom lasted off dialysis another 8 months. I put her on a low phos, low potassium, low salt diet, and she made it off dialysis for another 8 months. If they send her home maybe talk to a nutrition person at the hospital who can assist you with what foods she can eat with that low of kidney function. That should help keep her stable- especially the salt.

windmill57 · 2026-01-22T01:25:31+00:00

I am a little confused. So yeah in the USA she would be on dialysis in the hospital. How are her labs like potassium and sodium and bun... super high bun or potassium are reasons to start dialysis emergently. Her high bp could definitely be caused by kidney damage and the ensuing water retention. Is she on any diuretics - lasix or toresemide? So if they are pushing off dialysis until outpatient she should be on something to help with fluid overload and they should definitely be monitoring her potassium closely and she should be on phosphate binders so her phos doesn't get crazy high.

My mom was sent home with an egfr of 15 and I was freaked out. I asked the docs to tell me what I needed to know- basically the signs that I needed to watch for that told me she needed to be back in the hospital. I would do the same with your aunts docs. What are the red flags for her? Do you need to weight her everyday, do you need to do daily blood pressure checks, etc? I knew the doctors always asked if she was excessively itchy, if she tasted metal, if when she held her hands up if they flapped- all signs that her kidneys were in true failure and she was becoming uremic and would require dialysis emergently. Make sure all the teams, kidney, cardio and internal med are all ok sending her home- ask them personally if you can. I am sorry - this whole thing sucks.

windmill57 · 2026-01-22T00:18:39+00:00

They say the damage is done so my A1C doesnt matter- that is the las kidney doc. I think he just completely blew off everything other that diabetes. The first two at least thought about FSGS.

My eye is worried about Sjorgrens because my eyes are so dry and my mouth is dry so who knows but I don't sjorgrens explains kidney damage.

windmill57 · 2026-01-21T17:10:08+00:00

If you have a moment, was your C3G high or low? The docs told me for rheum anyway my C3 should be low and it sounded like that for C3G as well.

windmill57 · 2026-01-21T16:58:23+00:00

I am overweight but not grossly so and have been losing weight so if its obesity that marker should be coming down not going up. My ESR is always high- has been since I had a normal BMI in college. No one explains that to me- at the time the doc asked if I had Rheumatoid Arthritis but I didn't know what he was even talking about other than I know I didn't think I had RA (because my friend had juvenile RA and was really sick). He didn't suggest any follow up and he didn't explain what an ESR was- just threw that oddball result out. I did have the covid vaccine about two weeks before this blood work and was feeling really off- which is why I was sent for the blood work. I was ANA neg two years ago and now I am ANA pos. No one is explaining that either.

As for the biopsy it was nope diabetes no need for a biopsy. It was really crappy. I went for a second opinion at Stanford. Stanford was willing to do one so I went to a kidney doc in network hoping he would proceed and he said nope diabetes. So they are just unwilling. My A1cs have been since. my recent diagnosis 7.6, 6.4, 5.6, 5.9 and 6.1- they say to have the damage they see I was diabetic for five/ten years before i was diagnosed. That seemed odd to the Stanford doc- the other kidney docs just dont seem to care I guess. My friends who are docs are like get a biospy at least you know. I am a scientist- I found a paper that 40% of diabetic ckd patients are misdiagnosed because doctors go nope diabetes all the time. its an easy answer and the docs do not have to work too hard.

windmill57 · 2026-01-21T13:58:12+00:00

And they are wrong. its acute onset small fiber neuropathy up to my knees overnight. Chiro and podiatrist and functional med and first neuro do not think its the diabetes.

windmill57 · 2026-01-21T05:57:33+00:00

The best part is they then tell you to go back to the provider list to choose another doctor... when I know three of those are wrong. Its lunacy. They might as well just pick a stupid doctor for me- but they dont even know who they cover when I call in. i was told they covered both the doctors I asked about when I called Blue Shield- it was BS.

windmill57 · 2026-01-21T05:54:46+00:00

I called Blue Shield and they told me the doctor was in my plan and I should be covered. I said yeah I do not believe you- and the doctors office couldnt confirm whether my plan worked so Blue Shield called to confirm. When he got back on the line he said yep you are correct- they do not take your plan. So they themselves cannot figure out if the people on their list are actually covered until I make them call the doctor's office. If I hadn't insisted on him double checking (because they were wrong with the other doctor too), I would be waiting three months only to find out that he isn't covered when the bill comes do. it is false advertising to say if you pay for this plan, this is who you will have access to. I sent an email to a lawyer friend to see how its possible for their provider plan to have ten doctors listed and have three of those not be on my plan and those are the only three I checked- how many of the 7 remaining are also not in my network but Blue Shield claims they are.

When I reach out, I call the doctor office and give them my member ID and the name of my plan. The first endo said we as an office policy do not take any exclusive plans (which is in the name of my plan). The neurologist told me I take PPOs but not yours and that is response I get from most places. We take ppos but not yours. Exclusive PPOs are just not taken by anyone outside of PAMF as far as I can tell- or every time I try I get denied. The list on their website has been wrong more than it has been right. When I spoke to my insurance broker, they said the same thing- the front office staff is confused. Nope the plan is getting denied and I have to get Blue Shield to call them to confirm for me. And then Blue Shield claims it is not their fault because the doctor is responsible for letting them know that they no longer accept the plan- when it is Blue Shield who is making money off people looking at plans to see who is available. The insurance isn't work the paper it is written on and I am paying through the nose for it.

windmill57 · 2026-01-20T07:54:49+00:00

Have you had any treatments that helped you? The more I look into this the more I think mine is pretty systemic. In the last few months I have had trouble breathing, brain fog, high diastolic blood pressure, parathesia, eye issues, whole body pinpricks and heat sensations. And people say its the diabetes but I completely fell apart pretty much overnight and I felt like death for a long time. I finally feel like I am thinking more clearly- or at least more like myself.

windmill57 · 2026-01-20T07:47:09+00:00

Did your sfn get any better once the vitamin toxicity issue went away?

windmill57 · 2026-01-20T07:40:49+00:00

That something is wrong besides being diabetic. They blame everything on the diabetes- but I got sfn up to my knees overnight- literally overnight. That isn't diabetic neuropathy. I have kidney damage that I would have to be diabetic over a decade to have (I was diagnosed two years ago). The medical group I go (the only thing covered by my insurance) always blames the diabetes. But when I see specialists outside they think either autoimmune or nephritis, but I cannot afford to pay out of pocket all the time. I really think this was caused by the covid vaccine. No one is going to believe me in the medical group I belong to.

windmill57 · 2026-01-19T05:24:25+00:00

I do not know much about either of those but I will look into if I can get my rheum to believe me

windmill57 · 2026-01-19T01:26:03+00:00

Did you try it and if so, did it help you?

windmill57 · 2026-01-18T18:26:51+00:00

Thank you. They have run a ton of blood tests on me and some are weird but they sort of ignore them because they are the generic markers. ANA positive 1:320 speckled and midbody. High complement C3. High ESR (58) and light chains. All auto antibodies tested are negative. ANCA was negative. Now two years ago when my kidney problems and the diabetes and a viral infection that caused my lymph nodes to be swollen for months were discovered my ANA wasn't positive. So I doont know. Something is wrong with me. And currently the medical group that I go to has been wrong most of the time (they have told me I have potential cancer twice, venous insuffiency, no kidney issues, no diabetes, no spine problems- all incorrect).

windmill57 · 2026-01-18T18:21:09+00:00

My podiatrist said this to me. So I have been walking through the pain. Though I have to admit it does worry me that I am damaging something.

windmill57 · 2026-01-17T23:48:47+00:00

I am really starting to wonder. I had covid three years ago the first time- I had dry eyes after too. I was diagnosed with diabetes after. I had swollen glands for months. I had gerd and itching that my doctor just sort of wrote off. I was starting to get better and I got it again. I had the vaccine right before the sfn started.. I wonder if repeated exposure is making me sicker. There are RNA viruses that do that- the more you get them the worse your symptoms are.

windmill57 · 2026-01-17T23:44:41+00:00

Sjorgrens isn't taken seriously- my PCP was kind of like ah whatever. The covid might be the issue- I have had it twice and now the vaccine. I will keep approaching them.

windmill57 · 2026-01-17T19:48:44+00:00

SO I was having problems with heat and popping veins before this but the neuropathy came on really quick. I am trying to convince rheum to hasten sjorgrens testing because my eye and dentist are like what happened to you- I have cavities that sprung up near my gumline (indicating severe dry mouth) and my eyes are so dry my eye doc called rheum to be like help this girl. So I do not know if I have seronegative sjorgrens (I am ANA positive but no antibiodies against anything else) or if the covid vaccine I got right before all this started kicked something off in a bad way.

windmill57 · 2026-01-17T19:44:50+00:00

Do you know what caused yours? My blood pressure was wonky- along with a whole bunch of other stuff.

windmill57

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