Need advice, PV symptoms?: Hi everyone, I’m new... - MPN Voice

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Need advice, PV symptoms?

Sick_and_tired247
Sick_and_tired247

Hi everyone, I’m new here but hoping I may bother you for some advice and hopefully talk me off the ledge of hypochondria? My doctor is on vacation and I feel like I may finally be putting together the puzzle of my health issues over the last few years.

It all started a couple years ago with increasingly worse PVC’s so I start a beta blocker which stopped them but then I start having super high heart rate and shortness of breath walking up inclines or stairs. That turned into high heart rate just with standing. I pass my echo and stress test so I’m thinking I have POTS. Doctors just shrug their shoulders. Some say I’m too old at 48 for POTS. (Postural Orthostatic Tachycardia Syndrome)

Then last December I wake up with pelvic pain and discomfort under left rib. I’m wrongly diagnosed with kidney stone. Still not feeling well in February so I have a CT scan which showed multiple ovarian cysts and a ruptured breast implant. Ok so maybe my body is having an autoimmune response to the implant rupture? I’m fatigued with joint pain but autoimmune testing neg. Started birth control pill to help shrink ovarian cysts. Maybe cysts and possible adhesions from past surgeries causing left abdominal pain? Had implant replaced and feel almost 100% better! For 3 months I feel great then while in Italy on vacation the fatigue and left rib pain returns. Over the next few months new symptoms show up with increasing fatigue. Squiggly flashes in right eye, headaches waking me from sleep, handful of sweaty nights, ears ringing, increased bone/joint pain.

So last weekend I get a liter of fluid with vitamins and a shot of Toradol to give me some pep. I have the MTHFR mutation which supposedly causes vitamin B12/folate deficiency so this should make me better, right? Nope, the extra fluid must have been too much for my body. A couple days later I’m in the ER with chest heaviness, high BP (170/110), headache, lightheadedness. High d dimer test, hematocrit just barely over high, clear CT and chest x ray so I go home but I keep trying to figure out why did I feel better after surgery? I notice on my blood work over the years that it has slowly crept up. Is it possible the blood loss from surgery is why I felt better? This leads me to thinking rising blood numbers and left rib pain caused by an MPN so I take a look at my DNA data from 23andme and see that I have JAK2 mutations. My B12 level from last March was high at 1400.

Most people don’t seem to have symptoms until their H & H is super high and I’m having symptoms with a hematocrit just barely over normal so I’m really hoping I’m completely off the mark thinking I have PV. Could the IV fluids show my H & H to be lower than they actually are? Oh and one other weird thing. I have an app I use to check my heart rate and it also measures blood viscosity which I always ignored until it began warning me my blood is too viscous.

Thank you so much for your time and advice!

16 Replies
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Hi, so sorry to hear you are not feeling great. I’m afraid I’m not a medic so can’t help with a diagnosis, only your doc can do this. I think you should ask for a referral to a haematologist to get answers to your blood related questions. It’s important you insist on this, I’ve become a lot more assertive since my diagnosis.

You can get trustworthy medical info about PV and other MPNs at the MPN Voice website. Some of things you can do to help your symptoms are: drink plenty of fluids, eat as healthy as possible. I find pasta, nuts, etc help with fatigue, exercise when you can and rest when you have to. Above all,it’s really important you get checked out by a haematologist and anyone else who specialises in the issues you are having.

In the meantime, I’m sure you are not a hypochondriac, just someone who’s having to cope with a load of horrible and worrying symptoms. You do need to get answers soon as worrying makes your health worse. Sending you E hugs and to let you know there is someone thinking about you at this difficult time. Keep strong, insist on the expert medical advice you need. Kindest regards Aime xx😺😺

Thank you Aime for your time and kind words. I have set up an appointment with a hematologist and will hopefully soon get to the root of my health issues.

That’s good. Write down your questions before you go so you get all the answers you need and want. If you can, take someone with you - an extra voice and set of ears are very handy as it’s easy to be uptight and miss or not hear things correctly. Let us know how you get on. As you have seen already, you’ve got friends here. Kindest regards Aime xx😺😺

Wow I am sorry I am new here but totally agree with Aime. an is when I found out my blood was too thick..Sending you hugs and prayers and love and strength

Thank you, I really appreciate your kindness and prayers.

You are so welcome

Wow I think with all you’ve been through someone would have picked up on your bloods. Why were you not told about your Jak 2 mutation?

I think you need to arm yourself with a list of questions and try to be calm when you put them to your GP. Then ask for a referral to a heamotoligist.

Good luck

Positive for JAK2 mutation is a pretty clear indicator for PV - along with high HCT levels. Fatigue, headaches, visual disturbances etc etc all sound run of the mill symptoms. It’s good you have an appointment with a haematologist. If it is pointing to an MPN just ensure they have specialist knowledge of the condition (sometimes easier said than done!). PV may not be responsible for all your ills - you sound like you have a lot going on - but if you have a confirmed diagnosis then it’s really important to get it properly managed. Let us know how you get on.

My goodness you have been through a lot in this journey. If you have the JAK2 mutation, it is indicative of PV. I have found that it is important to have a MPN Specialist/ Hematologist take a look at you and confirm the diagnosis. I am thinking of you and wishing you well.

Stay strong and continue to pursue a proper diagnosis. You are not loosing it. You are going through what a lot of us have been through with this condition. I believe you are on the right track now with your upcoming appointment with the Hematologist.

If you have Jak2. You probably have an MPN. Or PV. Confirm with a hematologist. Also you should talk to them about being on the pill. Both will cause blood clots. I've had many of the symptoms you've had and more. I'd like to find out what app you're using for the blood viscosity. I will see a hematologist as soon as possible. I'm surprised 23andMe tells you about the Jak 2.

I have stopped the pill and started daily baby aspirin. The app is called icarehealthmonitor but it may no longer be available due to liability because it uses pulse wave to give a blood pressure reading which isn’t always accurate. So not sure how accurate the blood viscosity is but it’s interesting that a year ago it was always in the normal rage and now it isn’t.

I picked up the JAK2 mutations by running my 23andMe raw data through Promethease. I’m a retired RN so I have some medical knowledge but never dealt with MPN’s. I’m trying to understand the significance of the mutation. Does just having the mutation mean that a person will have some sort of MPN or that the person is at risk for the mutation being activated?

Thanks again for everyone’s support!

Sick and tired 247. You can have the JAK2 mutation without having an MPN.

Good to know! Thank you!

Believe the mutation is an Mon. It has 3 forms and may/may not progress overtime to cancer. More and more people are being diagnosed. Doctors are new and learning. I have been to a few and symptoms are different for everyone. Best is to find a hemo. with knowledge or get a few opinions.

Thank you everyone for all your support! I feel less alone in this journey! I will keep you updated. ❤️

Hi. I think people have done a good job already giving you great advice. I just want to add that having abdominal surgery puts us at higher risk of bowel adhesions which are painful & might be the cause of your pain if it’s any place you have intestines. I’ve had this a few times. The adhesions can “unkink” themselves & the pain disappears or you can have total blockage & need hospitalization & possibly surgery (which I’ve had). Also wanted to mention that jak2+ isn’t only in PV but can also be in ET. Sure hope you get answers soon. And as Aime said, please let us know how things turn out. People here often know more than hematologists unless they specialize in MPNS. So if it turns out you have one feel free to ask for information. Some questions we can answer. Take Care. Katie

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