Actually the doctor diagnosed PNH before my husband had a biopsy. I stumbled upon his other diagnose of macrocyclic anemia that he refuses to treat while he has lost feelings in his hand feet and leg. His response is he only deals with blood so the anemia is not his concern. My husband is 71 and they seem to just dismiss his anemia symptoms. His blood keeps going lower and there’s no concern. As long as LDH is in normal range that’s all the doctor looks at. Also I know PNh isn’t hereditary but my mother in law had MDS and my sister in law had AML and the doctor gets angry with me because I am concerned

Hi Robert! Are you worried that doctors might resort to frequent bone marrow biopsies? I ask because that was one of my concerns when I first started dealing with all this. Lumbar punctures aren't pleasant (though some people don't even feel them!).
In the 22 years I've had this condition, I've had a total of three biopsies; they were performed when the doctors wanted to find out if I was experiencing bone marrow failure and to rule out other possible conditions. The first confirmed bone marrow aplasia, while the other two simply indicated marrow dysfunction that wasn't progressing.
If you see your doctors regularly and get your tests done, they typically won't order biopsies on a regular basis. Blood counts usually provide the necessary information, unless they see significantly low counts in your results. It’s not a test they perform on a whim.
Just as a joke, whenever doctors have asked me to get a biopsy, I tell them they should get one themselves first so we’re even.😂

It seems your husband has his LDH levels under control; does he show no signs of hemolysis or symptoms like muscle pain, dysphagia, or episodes of thrombosis?

I understand your concern, especially given that family members of his have suffered from hematological disorders over the years. Although you know that PNH is not hereditary, it is natural to feel uneasy and wonder if your husband might be suffering from a similar condition.

I am not a doctor, so I cannot offer medical advice, but I do believe it is important for you—as the patient's partner—to get answers to all your questions. You should have all your doubts clarified and receive explanations delivered with patience and empathy. Uncertainty breeds anxiety, after all, and that is the last thing your husband needs right now. I suggest making a list of all your questions and taking it to the consultation so they can be answered.

Keep in mind that if he underwent a biopsy and the biomarkers showed no signs of pathology (such as MDS or AML), the doctors may have ruled those conditions out completely for that reason.

On another note, macrocytic anemia is very common in PNH cases. Consider the complement cascade system—the mechanism the immune system uses to defend the body and clear out pathogens; in PNH, this system causes increased destruction of red blood cells. It is possible that your husband’s bone marrow is functioning perfectly—meaning there is no bone marrow failure—yet he still has a low red blood cell count because the cells are destroyed in the bloodstream during that clearance process. The higher the PNH clone percentage, the greater the number of genetically modified red blood cells lacking the specific protein "flag" that signals to the immune system that they are not pathogens to be eliminated. Furthermore, the PNH clone doesn't just affect red blood cells; the *PIGA* gene mutation also impacts platelets and white blood cells to varying degrees. Doctors might simply be waiting to see how your husband's condition progresses. Sometimes, PNH patients experience drops in blood counts without it necessarily indicating aplasia or another underlying condition; unless hemoglobin levels fall below 10, doctors usually don't resort to interventions like blood transfusions.

However, I do think the lack of sensation you mentioned warrants attention. That sounds more like a symptom of PNH to me, and it could possibly be due to a vitamin B12 deficiency—though that is something your doctor would need to evaluate. Folic acid is also an excellent supplement for patients with active PNH; you might want to ask your doctor about it.