Anyone else in "limbo land" for years?

[fernie]

Hi everyone, I've been reading on and off for a number of years and not really knowing if I belong here. My platelets started to go up about 5 years ago, slowly, slowly, getting higher. but because I lost my spleen 42 years ago and apparently that can cause your platelets to go up, I was eventually told to just take aspirin. I was under a haemotologist for a year or so, and he just looked at me and went hmmmmmm most times. I had no symptoms to speak of. My platelets have sat around 800 for a few years now, but earlier this year i was prescribed Melatonin by my GP to help me sleep, and whamo my platelets are going up every month very slowly and I'm now sitting at 1050. I read that Drs use Meltonin to keep platelets higher in cancer patients. Has anyone else had this problem? My Dr has been in touch with the Haem again and I'm waiting for an appointment at the hospital. My gums are bleeding a bit when I clean my teeth, which is unusual, and I have a pain in my shin with a varicose vein forming, I think they call it phlebitis. I was getting quite tired in the afternoons, then I started to drink/eat grapefruit and that seems to have helped with that. it has a compound in it called naringen. Anyways, anyone else been in limbo for years like me. or in the same situation of not having a spleen? Cheers, Beth

[Rachelthepotter]

Hi fernie

Have you had a test to see if you have any of the mutations associated with MPNs? That might clarify things.

[fernie in reply to Rachelthepotter]

Yes, I am negative for JAK2 and CALR. My bloods are always quite strange because of the splenectomy. i have permanent lymphyocytosis, my hematocrit sits at about 47-48. My haemoglobun was quite high for years, but has gone down to about 155 now. I also have had some quite high iron levels a while back. still pretty high normal levels now. I used to give blood four times a year with not much effect on my iron or hemoglobin, but it made me feel more energetic. Can't donate anymore.

[ChelseaF]

I have been in limbo for years also. My platelets have been high for 12 years now that we know of, but I have only known about it for 2 1/2 years. I have been tested for many mutations and I’m negative for all. My biopsy was inconclusive but we’ve ruled out any secondary causes we can think of. I’m at the end of that road and all that’s left is to monitor me. The course of treatment is no different than if ET were confirmed.

I am symptomatic and pretty frustrated to have no official explanation. The doctors are working under the presumption that I have ET by process of elimination.

[fernie in reply to ChelseaF]

Nice to know I'm not alone Chelsea & sorry i missed your reply. I've now found out the pain in my leg is Erythromelalgia not varicose veins, so I'm symptomatic too. I've tried taking a mini aspirin twice a day and that seems to keep the pain at bay. I just had my appointment with the haemotologist and they are doing more tests, xrays and I'm awaiting an ultrasound. It was suggested i might be put on Hydroxyurea (sp??). But I'm not keen on doing that. They did take a pint of blood off at the hospital while I was there to see if they could drop my HCT a bit as it makes me tired when it gets up a bit. Other than the leg pain I'm not too bad. Hoping to get some blood results back soon. I have another appointment in 6 weeks with the Haem. I still haven't had a BM biopsy, and I'm happy with that as it sounds painful.