Essential Thrombocythemia: Looking for information and support

@sdduan, I moved your message to this existing discussion where you can connect with many members living with essential thrombocythemia
- Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

As suggested by @eileen11108, you might also be interested in this related discussion:
- New to Pegasys for ET - advice please!
https://connect.mayoclinic.org/discussion/new-to-pegasus-advice-please/

What treatment options is your team suggesting for you at this point?

Sorry to hear you are suffering. Just a normal bar, we just bought a cheap one, in fact the first one he had was one of the small freebies he took from a hotel room! Hope it helps.

Hi @docoltun. I think @lynn22 is talking about a bar of soap. My grandma swore by that trick too. 🤷‍♀️ Whatever works, right?
This may have been discussed previously, but have you tried any magnesium supplements such as Magnesium Glycinate? Often this can relieve leg cramps.
With your routine bloodwork for ET, does your doctor check your magnesium level?

I was diagnosed with thrombocytopenia. Is this different from thrombocythemia? I have weird things going on physically. Diagosed with kidney disease and I have ostomy and much more. I would greatly appreciate it if I can be directed to helpful information. Thank you,Pamela Also the doctors don't explain and call me too complicated because of all the medical issues I have.

Hi @rubles, Both thrombocytopenia and thrombocythemia are conditions relating to platelet levels in the blood. One is too few platelets. The other is a condition where there are too many. Both have their own set of issues.

Here are the differences:
~Thrombocytopenia is a condition where you have a low blood platelet count.

https://www.verywellhealth.com/what-is-pancytopenia-2249143
~~~~~~
~Thrombocythemia is a disease where your marrow makes too many platelets.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/thrombocythemia

I know that you’re dealing with quite a few health issues at one time which can certainly complicate your treatments. Have you considered trying to get an appointment with a larger university or teaching hospital, or Mayo Clinic where doctors tend to work collaboratively in each specialty to find answers to your health problems?

Here’s a link to request an appointment with Mayo. http://mayocl.in/1mtmR63

Another option depending on where you live. Mayo Clinic has Care Network Members where they work with some clinics across the country who meet with the standards set by the Mayo Clinic. Here’s the map showing the facilities. See if there is one near you.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members

Is the Thrombocytopenia a new diagnosis? How are you doing with the kidney disease and your ostomy? How long ago did you have the ostomy surgery?

That makes a lot more sense! Thanks. Yes, magnesium is checked. Since it seems to happen only in sporadic cycles (several days running, perhaps a week) I've learned to live with the cramping though it's very annoying to those around me.

Similar story here! about to check in with Hemo and wondering if she will order BMB, NGS or any others to ascertain the diagnosis. living through anxiety, no medications, pain and wondering what the right nutrition plan would be for someone in my condition.

I have a similar diagnosis. At 49 yo I was diagnosed with ET. I am 69 now. So I have had it for 20 years. In the past few years I was found to be triple negative in gene mutations. I have been on hydroxuria for the past 10 years. The dose varies but mostly 1000-1500 mg per day. Platelets hover around 600,000 to 800,000. The docs seems comfortable with this. I take an aspirin 81 mg daily. My advice is keep moving, stay well hydrated, eat healthy, limit alcohol and see an expert in this rare condition. I occasionally go the Mayo in Arizona to see Jeanne Palmer MD. I get my blood drawn once a month and see a local oncologist every 6 months. Good Luck. I will send you an excellent resource.

I am interested in resources for ET. I am newly diagnosed with ET and PV. All info is appreciated.

Good morning, @taisaint. Welcome you to Mayo Connect. You’ve recently been diagnosed Essential thrombocythemia and Polycythemia vera.
Both of these are blood conditions where your bone marrow is producing too many of a specific blood cell. In the case of ET there are too many platelets which can cause clotting issues. With PV there are too many red blood cells which can also have its share of problems.

I’m posting links to a few articles below to get you started on information. The articles are from Healthline.com. They are well written and give a good overview of ET and PV without overloading you with more than necessary at this point.

https://www.healthline.com/health/primary-thrombocythemia
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https://www.healthline.com/health/polycythemia-vera
~~~

Both conditions of PV and ET may be indications that your bone marrow, which is the central blood manufacturing site of body, is compromised and not able to produce healthy blood cells. Both are symptoms of what is called Myeloproliferative neoplasms MPN. There can be changes taking place in the bone marrow which can alter the normal DNA division to allow for uncontrolled cell division.
Here’s more on this disorder and how it relates to PV and ET.
https://www.healthline.com/health/cancer/myeloproliferative-disorders

Do you mind sharing a bit more about how you were diagnosed? Have you had a bone marrow biopsy or blood work for possible mutations? Were you having symptoms or was this found with a routine cbc?