Strokes, ET, treatment options

[sandor13]

Dear All,

I’m a 37-year-old male. Two and a half years ago, I suffered a stroke. At that time, in the emergency room, my platelet counts were 844, 698, and 737. The doctors did not pay any attention to those values.

MRI scans show that I had quite a few silent strokes in the past, around ten.

After five days, I was released from the hospital. A year ago, on a nephrology-related blood test, I accidentally noticed that my platelet count had risen to 1475. I did not know what that meant, so I asked my nephrologist. She suggested that I turn to a hematologist. I live in California, in the Bay Area, on Medi-Cal. Finding care here is quite complicated and slow, so for an additional four months, I was untreated. Finally, in September, I was diagnosed with ET (JAK2 V617F). I got Hydrea, 2x500 mg/day.

In October, I collapsed. I did not know the reason at that time. I was taken to the same hospital. The platelet counts further increased to 1075. There was no new stroke, fortunately. I was released from the hospital.

The hematologist increased the Hydrea doses somewhat. The platelet count decreased slightly to around 800. The hematologist further increased the Hydrea doses to one pill each day and two pills on Wednesday, Saturday, and Sunday. About ten days ago, I collapsed again. I was taken to the emergency room in a small city in California. On my second day in the emergency room, I collapsed again. This time, the nurses recognized that I had a seizure. I did not get a new stroke, fortunately. They tried to transfer me to UC Davis and UCSF, but those hospitals were overcrowded and could not accept me. The Hydrea doses were further increased, decreasing the platelet count to 650. I was released from that small hospital. Unfortunately, the platelet count rose again to over 800.

I’m trying to see a hematologist and neurologist ASAP, but I got an appointment just for October. That concerns me. I do not know what causes the seizures. I’m afraid of a new stroke as well.

I would be very grateful if you could suggest which hospital I should visit in the US for those who are experienced in MPN. I’m also an EU citizen in case there is no treatment option for me in the US.

Any help will be appreciated.

[rebeccaxxx]

I am so sorry to hear about what you have been going through. I am sure others will be along soon with some good advice. In the meantime here is the list mpnforum.com/list-hem./

[cata]

The best hospital from the world for blood issues îs în Israel “Hadassah Hospital”. Regards

Cătălin

[KLCTJC]

too bad you can’t take a field trip to Texas! MD Anderson sees people from all over the world and they could at least get you on a better path. I worry about hydrea and you being so young. I don’t know anything about California. But we are friendly here in Texas!😊. Hope you get some help soon.

[light in reply to KLCTJC]

Great idea, thank you for suggesting. MD Anderson, the best doc's there is Dr Verstovsek, Professor Messa too. If you can get to them you will get the best help you need in the US. Wishing you well

[KLCTJC in reply to light]

Dr V was awesome! Was my doctor until he went to work for a drug company.😢. I am now seeing Dr. Marassova (sp?). She is who he wanted me to see. I have only seen her once and she seems nice. Of course, I was super grateful to see him when we decided on Besremi. I see her in 1mo.

[sandor13]

Thank you for the pieces of advice so far.

I know MD Anderson but not Rebecca's list and Hadassah Hospital.

CA provided me with two hematologists, but my main concern is the seizures I got. I probably need integrated help from neurologists and MPN specialists. So far, when I got the seizures, the platelet levels were high. Hopefully, this week, I will learn when I can see a neurologist at least, hoping that I will get help faster than with the MPN doctors.

[hunter5582]

Get yourself to a MPN Specialist ASAP. You have a complex highly symptomatic case that needs urgent attention. There are other treatment options for ET, but you need expert input on which options are best for you. You already have one link to MPN experts, here is another. pvreporter.com/mpn-speciali...

[sandor13 in reply to hunter5582]

Thank you, hunter. Nothing is easy, though, here in California. The emergency doctors put me on Keppra to avoid new seizures. Seizures are just the symptoms I think.

[light]

MD Anderson, the best doc's there is Dr Verstovsek and Professor Messa too. If you can get to them you will get the best help you need in the US. Wishing you well

[sandor13 in reply to light]

Because of my health plan, I will first try to find an MPN specialist here in California, but I will not wait long if the process is slow.

[light in reply to sandor13]

I understand however, you cannot afford to wait. Wishing you well.

[Mostew]

Unfortunately we have to be very assertive to get best careNot easy but please get in touch with MPN specialist stressing you need to be seen.

Best wishes to you .

[gdpone]

Hey man as someone your same age I’m sorry you’ve had it so much rougher than me. Were your strokes a result of blood clots? If so I wonder if all your silent strokes have caused the siezures. I worry if I’ve had the same but have no symptoms but it’s scary.

I’m not very well versed in this area but I would assume once you see a neuro they could put you on anti seizure meds. I would also assume no other underlying pathology for the seizures, the meds should stop them.

Wish there was more I can do but wish you the best outcome hope it gets sorted ASAP.

[sandor13 in reply to gdpone]

HI,

I do not know exactly what caused my strokes. Unfortunately, I have never been treated. E.g., when I got a stroke, I was hospitalized. The doctors did three blood tests. My platelet count was high (over 800), but the doctors did not comment. I did not know anything about platelets and ET then; they just released me without any comments. About one and a half years later, a family member noticed that I had a high platelet count in a CBC ordered by a nephrologist. We did not know what that meant; I had never heard about MPN. That kidney doctor suggested asking a hematologist. Everything is slow in California, and it took months to see one.

A couple of months later, I collapsed. I was taken to the same hospital. They did not realize that I had a seizure. Soon, the hematologist diagnosed the Jak2 ET, and I got Hydrea. I tried to see an MPN specialist but could not; my request was ignored. About two weeks ago, I collapsed again at home. I was taken to a small city's emergency where I moved to. On the second day in the hospital, I collapsed again, and finally, a nurse realized that I had a seizure.

The emergency doctors tried to transfer me to UC Davies or UCSF, but they could not accept me, saying they had no vacations. Another hematologist increased the Hydrea doses to 3,000 mg/day. I'm getting that at the moment, and it concerns me. I was also put on Keddra anti-seizure that I'm taking.

Finally, I could schedule an appointment with an MPN specialist at UC Davies but just for October...

I'm desperately trying to find an MPN specialist and a neurologist to figure out what is the real reason behind these symptoms instead of just playing with Hydrea doses that have not worked so far.

Still, I do not know how to handle the bureaucracy in California. If I keep failing, I will try Texas, but in that case, I might lose my health insurance, which is Medi-Cal.

[Cassandra61]

Hi from the UK. Sounds like you need an MPN specialist asap. Really hope this works out for you. Let us know how you are doing as knowledge is power and we all benefit when people share their experiences. Take care

[sandor13]

This morning, I had a blood test. My platelet count was 667, down from 800++ a couple of days ago. However, I was put on 3,000 mg of Hydrea.

Do any of you have any experience with such a high dose?

The hematologist tried 2,000 mg per day, but the platelet count spiked to 800-900, and I got a seizure (actually two in two days).

I'm taking Keppra against seizures too.

[PrinceA]

Hi Sandor, I see MPN specialist at USC Norris Hospital in Los Angeles, her name is Casey Oconnell. Please check and see if you can get there. Good luck.

[sandor13 in reply to PrinceA]

Thank you so much...

I was promised to see one in the Bay Area, which is closer to my place. If it does not work out, I will try that doctor too.