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[Coco1965]

Hello all! I need to vent........I live in Las Vegas, NV and medical here is the worse I've ever seen. I have PV diagnosed about 5 years ago. I also have Hemochromatosis which is basically too much iron. With PV the iron is like fertilizer so we attempt to keep my iron as low as possible. Last time I was in to see my doc he said go ahead and eat some iron, you'll be getting phlebotomies anyway and I'll see you in 3 months. Something happened at the office and it closed for the day. I was called 1/2 hr before I was to leave telling me my 3 month appt was cancelled. They called me back 2 days later after me leaving a msg and told me that my doc said I could wait another month! I feel like hell, exhausted, body aches, headache and having weird nerve pain. According to my doc I shouldn't be tired when my levels are normal but I'm fatigued all the time. I'm tired of fighting the medical system here. So much so, I want to stop all treatment. I don't have family to help, no advocate to help. I'm exhausted and just don't have the energy. I work full time because I have to. I'm looking for a new doc, but in Clark County you are just a number. Does anyone else experience fatigue when in normal range? Nerve pain?

[Aime]

Hi Coco, so sorry to hear you have PV which I have too. There have been studies done and it has been proven that our symptoms, including fatigue does not always correlate with blood counts and that is my experience too.

I live in the UK so don't know much about medics in the USA, however if you Google "Patientpower MPN" you should find the USA website which I hope can help you with which medics are better to see. Judging by what you said, I would be looking for someone else who was more sympathetic.

Things which help my fatigue are: lots of fluids, particularly water, rest when I need to (I sometimes have to give in and lie down), eating as healthy as possible, but have treats too - you deserve them. I find foods like bananas, nuts and pasta help my energy level but enjoy my chocolate too.

I can't help you with the nerve pain because I have widespread osteoarthritis which causes lots of different pains including nerve pain.

You will reach a point that you will feel you have some control over your disease and symptoms but you need knowledge and a good medical team to achieve this. Apart from the patient power website, MPN Voice website is trustworthy and the posts on this forum are closely scrutinised so that the information is correct and not harmful.

I hope the information helps you. Be assured you are not alone but you must get a haematologist and team that you can rely on and who have sympathy for your PV. Keep in touch and I and probably other forum members will help as much as we can because we understand exactly what you are going through.

Kindest regards Aime x😺😺

[Rachelthepotter]

Hi Coco

I have a different MPN but I too find that my tiredness and susceptibility to infection don't bear much relationship to the numbers on my blood count. For example, right now all my counts are in normal ranges, but I 'm staggering through life ( a ceramics course I'd been looking forward to for ages) barely coping and with bad nose bleeds and a sinus infection ( and on antibiotics). So tho my blood picture looks normal, clearly my clotting mechanisms are not working very well, the white blood cells aren't doing their job and whatever makes us so very tired is workng overtime.

I'm working up the courage to contact the haematology team in London ( itself a major hassle) to see if I need a different antibiotic or what. I find the muddle headedness that comes with the territory makes it all worse.

The people on this site do understand, and I'd agree very much with the suggestion to use the MPN USA site to see if you can find a doctor who knows more, and is more patient friendly. And who you feel is on your side.

Keep in touch.

Best regards

[katiewalsh]

Hi Coco,

Have you called the office and told them you cannot wait another month? Explain how severe your symptoms are and don't take no for an answer. Is your doc a hematologist? Is there any teaching university (with a medical school) within driving distance? They might be your best bet for an MPN expert. Sorry you're going through all of this. Feeling awful is bad enough, you shouldn't have to battle to get good medical care. Is it possible that your docs office staff is putting up the roadblock and not telling the doctor all the info you're leaving for him/her? Let us know what happens. Hang in there. Katie

[katiewalsh]

Hi again,

Coco, i searched a little online for you and in Reno it appears the medical school has doctors who may know about your two medical isssues. Once you link up with the right one, that doc can coordinate caring for you with a local hematologist. That's what I do in Florida. My local hematologist in Sarasota I see on a regular basis for blood work, etc. and the specialist I see is in Tampa, at Moffitt hospital. And it's quite possible that the specialists at the medical school in Reno already know 1 or 2 hematologist they'd recommend in Vegas. And I just call my specialist in Tampa about any problems which arise between appointments. I only have to see that specialist every 6 months but I think my ET is easier to manage. You might need more frequent appointments. Good luck, hope that helps a little. Please let us know how you make out

Katie

[Coco1965 in reply to katiewalsh]

Katie, thanks so much for the advice. I really never thought about using a specialist in another city. I feel like I'm so close obviously but I'm not thinking outside the box to get perspective. Great advice, thank you!!

[katiewalsh in reply to Coco1965]

Hi Coco, I just googled the distance between you & Reno and it looks like San Francisco and other places would be closer. (Had no idea) So you could probably get a good expert in a few different cities and have him/her coordinate your care with your local doc. Sorry to hear you also have Fibromyalgia, that really is a double whammy. Hang in there! Katie

[zvinkovic]

Hi Coco,

Here is a link to a patient recommended list of MPN specialists so you can browse and see who is closest to you

mpnforum.com/list-hem/

Unfortunately, there are no specialists in Nevada but if you would be willing to travel and if you insurance will cover it I remember people speaking very highly of Mayo Clinic in Scottsdale, Arizona, dr. Mesa, one of the worlds leading MPN experts works there.

As for your question regarding fatigue, it happens to me even when counts are normal, I believe it is connected to medications, interferon in my case. Also it happens when I don't drink enough water, because I sweat a lot and when I become dehydrated the fatigue overwhelms me like I haven't slept or had rest for days.

Wishing you all the best and if you have more questions or need a shoulder to cry on, please feel free to contact me.

[Coco1965 in reply to zvinkovic]

Thank you so much! I've been so down in the dumps. My regular physician put me on meds for depression and anxiety. See how I am in 4 weeks and adjust if necessary. I also have fibromyalgia which is playing into this as well. Thank you for listening and reaching out when I was having a very horrible time! Hugs

[Coco1965]

Aime, Thank you so much for the support and kind words. Update, I saw my regular physician on Friday and he kinda opened my eyes. I also have fibromyalgia which also causes fatigue and nerve pain. He put me on meds for my depression and anxiety that I'm experiencing. I go back in 4 weeks to see if I'm feeling better emotionally, if not adjustments will be made. I think between the PV and Fibromyalgia it's been a double whammy physically and mentally.