Hi everyone. I have a long story. I have been sick for 1 1/2 yrs. STarted with fatigue and then low grade fevers then night sweats. Had an enlarged lymph node removed and it was benign. Symtptoms kept getting worse.
Hospitalized last year for pounding heart and falling down dizzy. I just had a bone marrow biopsy b/c they worry about the fevers ect. Benign.
Dx with Chronic Fatigue Syndrome and Thyroid problems. Had a new blood draw a couple of days ago and the doc called to say this macrocytosis. I looked it up and it sounds like possibly PA.
I am really sick. I have lost a lot of my life. Just knowing I may have an answer is amazing. I too have the achiness, fatigue, muscle spams all over entire body, feet tingles ect. Nervousness.
My question is why out of all of at least 25 blood tests over almost a two year span did this not get caught????? My doc is having me do a b12 and folate test this wed. But I think this may really be the answer this time.

Has anyone had lymph nodes swell as well. If not maybe that was somthing secondary to the anemia. At times I can't drive. Or I'll feel it coming on and I have to go. I start shaking and feel like I am going to pass out.

Does macrocytosis mean I do have PA?????
ANy help would be so appreciated. I am really hurting!!! Did I mention brain fog and noooo memory????

Help, Deena

I put a lengthy reply on B 12 Anemia but felt the need to reply here as well.

I hear your frustration and understand it completely. I hope that you get the answers you need soon. I my self was diagnosed with incorrect conditions for over 20 years and it was a fluke that we even found the B12 problem. When things were at their worst it to 8 specialist, 6 months and nearly 25,000 in medical bills to find what was wrong. I think part of the problem is it comes on slowly and mimics so many problems.

I have never had the lymph node problem but have suffered all the rest along with many, many more. I lost the sensation of touch to most of my body and had electric shocks (generally in the limbs but it did get as far as my lower back) I was unable to driver for over 4 months and it still took me another 3 months before I could drive myself to and from work in one day.

Keep looking and keep a diary of the symptoms this will help. I had a 4-page list that I would hand to each of the doctors because honestly there were so many things happening I couldn’t even begin to remember them all. Some of them seemed trivial but occasionally this will spark something in the doctor’s brain.

Please keep in mind that none of us are doctors and you should always keep in touch with yours thru this whole process. But your homework that you are doing might just save your life and get you back to normal so keep up the good work.