Advocate for my diagnosis

[TurtleWings]

Does anyone know if possibly looking at Bechets, scleroderma, or MS as possible diagnosis which one would include pretty normal bloodwork?

[BabyOleg]

Hey turtle wings - I am currently under investigation - differential diagnosis”s are lupus or Behçet’s disease.

Although I have a long list of problems and symptoms

My blood work is pretty much in range for most stuff.. except liver and kidney function

I have been under investigation for over a year now and I’m back and forth for bloods and scans most weeks - they are still concidering both diseases as a diagnosis.

Is that what your letter says they are concidering

[TurtleWings in reply to BabyOleg]

Connective tissue disease possible Bechet’s is all that’s been written up so far. My kidney test definitely aren’t normal. I’ve been peeing blood for years but after they ruled out bladder cancer they scheduled me off another 6 months.

[rooser1 in reply to TurtleWings]

Make sure b12 is on that bw. They missed that for me for almost a decade. It should be at least 500.

[TurtleWings in reply to rooser1]

Yeah I’m b12, vit d and folic acid deficient. Had a doctor in Hawaii find this out for me.

[rooser1 in reply to TurtleWings]

Correct those deficiencies first. See if you have pernicious anemia. I currently take vit d, 100mg of b6 daily, a sublingual b complex and two probiotics daily. I also do a cyanocobalamin shot every 20 days. Since correcting the b vitamin, my behçet’s is so in the background. I had severe neuropathy, muscle twitches, no memory, emotional lability, ulcers, you name it.

[TurtleWings]

I think once I get a good neurologist and maybe a nutritionist I can try to get control. I get full feeling lots after eating a few bites and on some days it’s more work than it’s worth to make me something to eat. Doesn’t seem to me that I absorb the vitamins I take.