My Diagnosis

Hello, I am a young mother of 2 wonderful kids. I was working last year and going to school 4 days a week and doing clinicals and theory for nursing. I would take the kids swimming on the weekends to the public pool. One day I was feeling shaky thought it was from being in the sun too long. We left the pool and I thought I was going to collapse. I told the kids that if I did they were to call 911. I made it home, got some rest and drank alot of water. Awhile later I went to get some sheets out of the storage closet and I felt so dizzy, I went to grab the closet door to catch my fall but I landed on my wrist. Within 2 wks my left toe went numb. I was having symptoms of being super tired. I was sleeping 14 hrs a day and it still wasn't enough. I called the dr and labs were done. Everything was fine except B-12, so I began injections. Dr said that a normal person has b-12 stored in their liver or stomache enough for a 2 yr supply. I got levels checked again and even with the injections I was still 2and a half yrs behind. I started hallucinating and couldn't walk without falling so I got a cane and started physical therapy. Therapy was not helping and it was making it worse. I had to be walked with a gait belt. My feet felt like their were peronnas eating my flesh on the inside and they turned purple, forget the redness it had done passed that stage. Dr sent me to every specialist he could think of. I was bruising so bad it looked like I was black and blue for my normal color. I was in extreme pain and would cry and cry . I found blood in my urine and knew this wasn't normal as I had a hysterectomy 12 yrs ago. Went to dr and did the cup thing and they found trace amounts, went to Kidney specialist and he found gross amounts. I felt as if someone was poisining me? What is going on?. Went to Dermatologist and she diagnosed me with EM. I also can't hold B-6 and I have Polycemia Vera. which means thick blood, I can feel my blood pulling and releasing. I can feel it in my arm then it travels to stomach etc. I am on aspirin for this and blood pressure meds but it doesn't help me. I can't take b-6 because it gives me chest pains. I hurt all day and Dr doesn't know what to do as he is only a family doctor. Not a specialist. I don't know where to turn. Also I collapsed at the nursing home and was rushed to hospital. Had pneumonia and didn't know ot when I got my flu shot. My heart started messing up and I was sent home with a moniter. Upon returning the moniter I was immediately placed on Atennenol but I collapsed again with a pulse of 32. After I was on Attenonol for awhile that's when alot of my Em symptoms started with the pain and purple color. I hope someone reads this and can help me.
hopingforacure22 hopingforacure22
31-35, F
3 Responses Jan 6, 2013

Since I don't know where you are, I can't offer specifics. However, I would suggest a good hematologist, and a good neurologist be added to your care team. Also, in the interest of managing your pain, a pain specialist would be a good addition as well. I am just beginning my journey, and my primary, hematologist, neurologist, and pain management specialist work very closely in managing symptoms. Hope this helps!

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Does anyone have a clue as to what could be going on? I see that 15 people have read my story but I could use some advice. Thanks!