2 questions: Dizzy at certain times, and disability insurance?

[elisabetwhite]

Hello! Recently diagnosed with ET jak2 mutation a month before a major surgery which I am currently recouping from. I am 52 Female, residing in California, and have only tried the Hydrea for 2 wks prior to surgery, which I did not react well too at all and in fact my platelets shot up 100 points. I too have fatigue almost all the time, dizzy and overall feeling yucky. Question though. I seem to have worse dizzy in the AM, better in the PM. Prior to diagnosis I had the dizzy but seemed to only be seasonal in the winter months (my theory is sunshine helps me). Does anyone else notice a certain time the dizzy happens? I work full time, and having a difficult time at work with fatigue concentration and dizzy. Also, is anyone able to collect long term or permanent disability with this disease thru social security admin? I have not seen that topic yet, and am wondering if I eventually have to go this route and appreciate anyone's experience in obtaining this or being denied it. Once healed from surgery, I will be trying another medicine (but a bit scared to for side effects). Thank you in advance as I slowly learn about this disease.

[Marossi]

Hi Elisabetwhite, I’m 56 and was diagnosed with PV + elevated platelets last October. Like you, I feel fatigued a lot of the time and generally a bit ‘yucky’ (dizzy and nauseous and difficulties with concentration). I was interested when you said you feel more dizzy in the morning as that has generally been my experience too. I definitely feel better as the day goes on. I’m on Pegasys 135 mcg weekly and also have regular venesections. It’s hard to know whether it’s the disease itself, the medication or anemia brought on by the treatment that is causing these symptoms. I did cut down on my teaching load after Christmas and am now at around 50%. Would find it difficult to cope with more than that at the moment to be honest. I don’t benefit from any long term disability benefit and this isn’t something my doctor has brought up. I feel fortunate I can reduce my work schedule without it causing too much of a financial strain.

[Peter18]

Dear Elisabetwhite,

I'm 64 and have been diagnosed with PV with raised platelets. I too generally feel better as the day progresses. The fatigue comes in relatively short but very noticeable waves. The dizziness/lack of focus/yuckiness is more lingersome. Best wishes, Peter

[Wyebird]

Hi, I’ve got ET Calr. 2 years on and my platelets still aren’t stable. I don’t know what your platelet count is but once they start reducing you’ll feel loads better. As for fatigue I’m afraid that goes along with MPNs. I think you’ll have to find ways of reducing your workload.

I was fortunate. I retired early but am still plagued with fatigue where as others aren’t.

Fingers crossed once your platelets are down and in normal range you will feel fine.

[Kerri2]

Try raking meds at night drink plenty of water

[Wyebird in reply to Kerri2]

Hi Kerri2,!was your suggestion meant for me?

Yes I do take meds at night and drink about 3/4 litre of water through night too plus plenty during day.

My fatigue is real I’m afraid. Especially if I have to deal with unplanned situations. So much so in the early days I’d end up in A and E and blood tests often revealed a raise in platelets. I think our bodies just deal with our MPN in different ways.

[Kerri2]

Not meant to negate your symptoms. I mainly had nausea and headaches some fatigue. Sometimes wonder if there is correlation between platelet counts and development degee symptoms. Ran into severe anemia - taking break fr HU

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