I would love to learn if anyone on this forum has been diagnosed with or had tests for Polycythemia Vera. When I first developed the severe burning pain in my feet, my primary care doctor ordered blood work which came back indicating slightly elevated hematocrit and hemoglobin values. She sent me to a hematologist because she suspected that I had PV. The hematologist does not believe my red blood cell counts are high enough to be PV, and based on other blood tests I do not meet the clinical criteria for diagnosis. I am also relatively young (44) for a diagnosis of PV.
I noticed before being diagnosed with EM that half an aspirin in the morning makes it much easier to get through the day. About 9 days ago, I began taking 2 baby aspirin with breakfast and 2 baby aspirin with dinner. The additional dose in the evening has made a HUGE difference and I have not been laying in bed with the burning pain that used to make it so difficult to get to sleep.
I feel enormously blessed, but now am left to wonder if I will someday be diagnosed with PV. Also, I don't understand why my hematocrit and hemoglobin would be elevated even when my ferritin serum was low, and considering that I am still menstruating (quite heavily) which should lower my red blood cell counts.
I wish I could speak to PV but I have only read about it in similar studies. One of my first thoughts when I was dx with EM and then left to find info for myself was if I would develop one of these blood disorders. I still wonder. I am grateful you do not have PV. In my readings I have also seen that EM proceeds diagnosis of myeloproliferative disorders by about 2.5 years. Very scary when coupled with docs who don't have any info.
I am left wondering if I am just a ticking time bomb so to speak. These readings, along with pain management and quality of life issues, have been my dirivng force for findings a doc (hoping to have found a doc at Stanford) to see me for these reasons. I have a lot of the same questions? Hang in there. These is so much info on this site maybe someon can answer your (our) question better than I but know I am having the same thoughts/concerns xo. all my best
Thank you mshell. Even though you don't have the answers either, it is good to talk with somebody who has the same questions. It is just really good not to feel like such an anomaly. I share your wonder about being a ticking time bomb, and would love to find more answers. I am thinking about bringing these questions to my primary care dr. when I have my physical in mid-February. (I haven't had a complete physical in years, but feel that it is time and I value the perspective of my PCP who is not so specialized; specialists compartmentalize it all way too rigidly.)
dizzy said:
Hi Tullilou,
I wish I could speak to PV but I have only read about it in similar studies. One of my first thoughts when I was dx with EM and then left to find info for myself was if I would develop one of these blood disorders. I still wonder. I am grateful you do not have PV. In my readings I have also seen that EM proceeds diagnosis of myeloproliferative disorders by about 2.5 years. Very scary when coupled with docs who don't have any info.
I am left wondering if I am just a ticking time bomb so to speak. These readings, along with pain management and quality of life issues, have been my dirivng force for findings a doc (hoping to have found a doc at Stanford) to see me for these reasons. I have a lot of the same questions? Hang in there. These is so much info on this site maybe someon can answer your (our) question better than I but know I am having the same thoughts/concerns xo. all my best
Yes, I have PV & EM... After my GP referred me to a Hematologist last July, the Specialist said I have Secondary Polycythemia, not Polycytemia Vera. I started looking online & EM is a complication of the disease. I addressed the idea od EM to him and he started surfing to check it out in the middle of my appt. He said he wasn't aware of EM & wanted my GP to refer me to a Neurologist or Vascular Specialist.
I started thinking & I had foot sx. w/ numerous complications 2 yrs. ago which leads me to believe the EM was flaring then. My PV was not apparent at the time....
A million "Thanks" to my GP who listened to me & said I didn't have to go back to the specialist... Since it would be a while to get in to a Neurologist, he Rx'ed me Lyrica a week ago & I have had the most pain relief so far !!!
I'm glad you're getting some relief with the medicines. Do they know what caused your secondary Polycythemia? It is usually caused by high altitudes, dehydration, toxic fumes, smoking, etc. and treating the cause is supposed to make blood counts return to normal.
My HCT was 15.1 and HGB 44.3, which are only slightly elevated. It's still very unusual considering I menstruate heavily and my iron level is at 16 (fairly low considering the high HCT and HGB).
What are your HCT & HGB levels? Have the phlebotomies helped?
Thanks for getting back to me. Yes, I'm feeling so much better. The burning & shooting pains have subsided. Still a few muscle cramps & I'm dealing with the swelling. The docs are testing for heavy metal poisoning. I'm 38 years around toxic fumes and mercury in the dental office. I'm also an ex-smoker. :(
Yes, the phlebotomies help. I've had 4 so far in the past couple of months. HCT was 53.4 - now 45.3. HGB was 18.3 - now 15.5. I really notice I don't have the fatique, depression, confusion etc. Possibly helping is the fact that I'm also getting some sleep.
I'm also wondering if there is something heredity... I had idiopathic Thrombocytopenic Purpura at 14 y.o. My 16 y.o. granddaughter suffers a rare blood disorder also. The bone marrow seems to be whacko for both of us... She was DX w/ ITTP last year, & now wears a medic alert for anemia & Pancytopenia. Her Hemo. has her receiving IVIG infusions every 3 wks. Her levels are critical.
Have you had any MD diagnose your problems, other than just eliminating PV?
Although I can offer no medical explanation, I can share with you my insight. In my search for answers I requested numerous times over a 5 year period to be tested fo PV because, my uncle had it so severily his blood had to be drained once a month. No other family members on either side have/had any redness or warm/hot feet. All of my tests came back the same way, slightly elevated but I was not diagnosed with PV. Its been 7 years, and most most recent test was 6/8 months ago.
Oh my! Gwen, those are high counts!! I wonder if you don't have PV being made worse by secondary causes. Generally, they rule out secondary Polycythemia first by checking blood oxygen levels and environmental factors. But, there is a gene mutation involved with PV and that could be passed down through family members, so if they haven't done further testing I suppose you could still have PV.
I am so glad that the medicine and phlebotomies are helping! I can only imagine how miserable this has been for you.
Yes, my neurologist diagnosed me with small fiber peripheral neuropathy with paresthesia and EM. He's never treated EM so is looking for another specialist to send me to.
Gwen said:
Thanks for getting back to me. Yes, I'm feeling so much better. The burning & shooting pains have subsided. Still a few muscle cramps & I'm dealing with the swelling. The docs are testing for heavy metal poisoning. I'm 38 years around toxic fumes and mercury in the dental office. I'm also an ex-smoker. :(
Yes, the phlebotomies help. I've had 4 so far in the past couple of months. HCT was 53.4 - now 45.3. HGB was 18.3 - now 15.5. I really notice I don't have the fatique, depression, confusion etc. Possibly helping is the fact that I'm also getting some sleep.
I'm also wondering if there is something heredity... I had idiopathic Thrombocytopenic Purpura at 14 y.o. My 16 y.o. granddaughter suffers a rare blood disorder also. The bone marrow seems to be whacko for both of us... She was DX w/ ITTP last year, & now wears a medic alert for anemia & Pancytopenia. Her Hemo. has her receiving IVIG infusions every 3 wks. Her levels are critical.
Have you had any MD diagnose your problems, other than just eliminating PV?
Thank you for sharing your experience with me, Heidi! After 7 years, perhaps it's safe to say you aren't developing PV. That is a comfort, but I hope your doctor continues to monitor your blood.
Do you have primary EM, or has your doctor identified a secondary cause?
Heidi said:
Although I can offer no medical explanation, I can share with you my insight. In my search for answers I requested numerous times over a 5 year period to be tested fo PV because, my uncle had it so severily his blood had to be drained once a month. No other family members on either side have/had any redness or warm/hot feet. All of my tests came back the same way, slightly elevated but I was not diagnosed with PV. Its been 7 years, and most most recent test was 6/8 months ago.
My Hemo. agreed w/ my GP on the Polycythemia. My GP is the one (God bless his Soul) who listened to me & first ordered the phle. & referred me to the specialist. After my 4th phle. and the specialist not knowing what EM was I went back to my GP on my own. He is the one who put me on Lyrica & ordered the heavy metal testing. The first test will be blood, then hair for metal poisoning. He said then I could test for the gene.
I'm just thankful I'm coming out of this 2 year fog (nightmare) and beginning to get some answers....
Has your neurologist or primary physician considered sending you to a vascular specialist for your neuropathy??
Sounds like you are blessed to have a great GP! I am also thankful that you are surfacing from the fog :)
I see my primary care physician on Valentine's Day and plan to ask about vascular issues. I haven't seen her since my ordeal first began last Spring. I definitely have circulation issues, with either icy hands and feet, or burning hot and red hands and feet. Icy is less painful, but still not pleasant.
I didn't grow up with my mother and am not in contact with her, but I do remember her taking nitro glycerin pills for her heart.
It's sounding that it might be highly likely that some of your issues are vascular & w/ the obvious condition your mother had you might address your cardio risks also. Have you had a bone marrow biopsy or checked to see if your spleen is enlarged? You are young enough that you need to be aware of any systemic damage done will effect your quality of life later on. Please let me know your progress after you see your Dr. on 2/14. :)
You have such great advice! I will ask my Dr. to check my spleen; funny that the hematologist didn't do that, but all she did other than vitals was check my blood.
I just remembered that my mother had rheumatic fever as a child, so perhaps that's why she was on the nitroglycerin? Maybe there's no family risk on her side after all. I'll mention these things to my Dr. and will let you know how it goes.
HI, I know its been awhile since your post, but I am in the same situation.. I have learned that 3 baby asprin a day keeps the burning away.. my hands remind me when its take to take the just like a clock.. I also have PV and get phlabotomies every 2 weeks right now.. This is a new diagnosis but a pain I have been enduring for over a year now, its nice to have someplace to come and compair notes and stories so thanks!
I have also been tested for PV/Myeloproliferative disorder as my bloods showed some raised /larger than normal platelets now and then over the past 5 years. It was ruled out finally after having a bone marrow biopsy and that came back negative. I have had my spleen checked by ultrasound and by palpation several times but no problems there either.
I have tried aspirin but it did nothing to help with the symptoms and indeed caused a lot of bruising under the skin of my hands and swelling in my lower legs that made getting up in the morning very painful once my feet hit the floor. Only took a week of taking it to know it didn't agree with me.
I am 66 so well past menopause. My EM appeared gradually over the last few of years. At present it seems to be Primary rather than Secondary.
I am glad that the aspirin seems to be helping you. It is just very frustrating not finding the reasons behind the symptoms we suffer.
Tilly, I am so glad you responded to my post, I also had a bone marrow biopsy come back negative for the marker for PV but the doctors still believe with my other numbers ( a low epo), high hemocrat and thickness of my blood as being primary PV.. I;d like to think they are wrong.. they had blamed all the hands burning and feet burning on ranaulds till just a few days ago.. now I get this new word to explore.. thanks for the feedback.. have a great day
Thank you Tilly and cafriend for your posts! The hematologist doesn't think that I have PV, though I haven't gone as far as the bone marrow biopsy (though it was offered). After seeing a neurologist at Johns Hopkins, I've been diagnosed with autonomic neuropathy including postural orthostatic tachycardia (POTS). The Mestinon prescribed for that condition has done far more to help my EM than the aspirin did, and I have been able to wean myself from the aspirin entirely. My EM still flares (mostly feet, but sometimes hands) when I get too hot, and when I stay up too late or get really stressed. But, it's so much better than having daily, very persistent flares.
One thing I've noticed with the Mestinon is that I am sweating now. I would get very hot before, and it was a dry heat. Being able to sweat makes a world of difference. I guess that the autonomic nervous system controls sweating, as well as circulation.
Best wishes to both of you! I'm glad that the aspirin is helping you, cafriend.