Many symptoms of ET

[azaelea]

Hello all MPNers. I am wondering if anyone has had the various symptoms I've been suffering recently. I was diagnosed in March 2018 with ET JAK2+. At that time I had no symptoms just high-ish platelet count. Recently I've been suffering from Migraines visual and bad headaches, (I've always been a Migraine sufferer but these stopped after Menopause) I've also developed a very painful,burning little toe which spreads to all toes on one foot and also an extremely painful jaw when chewing food. Itching skin has also started and a few weeks ago I had a gastric bleed which cannot be investigated at hospital at the moment. GP stopped my Aspirin and I have re-started Hydroxy. Blood test showed platelets at 795 and I have another on Monday. I'd be interested to hear if anyone with ET has experienced these things and if anyone with platelets under the 1,000 has had gastrointestinal bleed. Are all these happening because my platelets have risen? It worries me that the visual disturbances are happening almost every day. Added to these troubles I cannot get access properly to our MPNVOICE forum so am unable to reply to posts or write one myself as I've always done. Admin have done their best but they've directed me to download the Healthunlocked app which is how I'm writing this but I do not like its layout and working one bit. Maybe someone out there could suggest something. It suddenly stopped working about 3 weeks ago. Regards to all. Fran

[Chaz1]

Hi, some of them do sound like ET symptoms although I don't think the pain when chewing is one so best vet that checked out. I'd discuss all your symptoms with both your Haemo & GP. The itching might benefit from you taking an antihistamine & the toe pain could possibly be gout which can be treated with medication or by consuming cherry concentrate every day (we get ours from Holland & Barrett) but I would definitely discuss it all & get it checked before you try to self medicate. You might find things improve when you have been on hydroxy for a little while but in the meantime please get them checked & then you can take the best meds to help. Stay safe x

[azaelea in reply to Chaz1]

Thanks for your reply. I will be talking to both GP and Haematologist next week by phone after blood test when I'll list my symptoms.

[clubdino]

Hi. Visual disturbances are a common symptom of ET. I have them occasionally. I saw an opthamalogist and they didn't find anything.

The burning toe sounds like erythromelalgia...also a common symptom.

Hopefully your doctor can advise you further on these symptoms. If your doctor is not a MPN specialist it may be time to seek one out As far as the website maybe try making a different account?

[azaelea in reply to clubdino]

Thanks for your reply. I'm sure it's erythromelalgia in my toe. I'll be talking to GP and Haematologist next week after a blood test when I'll hopefully get sorted out.

[Mazcd Partner MPNVoice]

hi Fran, so sorry that you are having these symptoms, I hope they get sorted out soon. Just a thought about you not being able to get onto the forum easily, have you tried using a different internet browser, sometimes that can help, so if you usually use Google then try a different one like Firefox. Best wishes, Maz

[azaelea in reply to Mazcd]

Thanks for reply Maz. I have been getting my posts through email, I presume from Google which I get alright but can't Reply or Write a message on . Just suddenly happened. I'll try your suggestion. In meantime the App works alright.

[Bridie123]

Hi Fran, the head/visual thing is my weakness too,on what is considered very low plateletcount. Had to come off asprin because of stomach and now take clopidriol. Also have bouts of itching. ET calr

[azaelea in reply to Bridie123]

Hi Bridie, sorry you suffer with head/visual things too. I may be put on Clopidogril too. I'm talking on phone to GP and Haemo next week after blood test so will hope they put me right. Fran

[mhos61]

Is it possible to have a consultation with your CNS or haematologist? They’re the best to advise you.

You’re in a bit of a dilemma. Aspirin is obviously very questionable with your current health issues, so totally understandable why your GP has stopped it. However, it is possible that your migraines and toe related issues are connected to the cessation of aspirin. Hopefully, hydrea will give you some additional benefit, but, I do think you need to discuss your new symptoms with your haematologist.

[azaelea in reply to mhos61]

Thank you for your thoughts. I'll be talking on phone to GP and Haemo next week after blood test and will hope they can help. Fran

[socrates_8]

Hi Fran...

Sorry to hear that you are feeling a tad anxious... However, given the environment we are all living in these days, it's hardly surprising really, is it?

Yes, it does sound like 'rising platelets' might be causing some of the symptoms that you are reporting... ( I do say might, because I am not a doctor, just another MPN patient, like you).

Fran, which is your 'Driver mutation - JAK2, CALR (?)

The reason I ask is CALR can often have more of an issue w/ higher platelet regimes, (I know this because I too am CALR+ Type2).

I am also curious to learn if your are taking 'Enteric-coated' Aspirin? It can have an profoundly different effect upon one's stomach, and potentially internal bleeds etc...

Worthwhile you checking that out at least...

I cannot assist you from here w/ your issues logging into MPN Voice, but maybe Maz could offer some help (?)

With the symptoms that you are reporting Fran, I would be contacting my specialist, just to be safe...

Hope this helps a tad...

Best wishes Fran, stay safe & well...

Steve

(Sydney)

[azaelea in reply to socrates_8]

Hi Steve, thank you for your thoughts on my situation. I've been on enteric coated aspirin all the time and I have ET JAK 2+ . Had to ring the Dr. today as the pain in my little toe became excruciating last night. I mentioned erythromelalgia being an ET symptom but he didn't seem to take much notice. I'm sure it is Uric acid . The result is he is treating it as gout and has prescribed Prednisolone 15mg for 5 days as well as antibiotics in case it's an infection, so here goes, more tablets! I have a scheduled blood test on Monday and will be speaking to Haematologist later in the week. As you have said, we have to take responsibility for our own bodies!

I'm pleased to say Healthunlocked team have just managed to sort out my problem yesterday with writing and replying to posts, for which I am truly grateful. Keep safe and well. I will report again in due course. Best wishes, Fran

[socrates_8 in reply to azaelea]

Cool...

At least, one small problem being resolved will help reduce some of the stress... Try to stay calm and focused, and make sure that your Haematologist fully understands your problem...

I have experienced, to some degree, similar symptoms at varying moments of this journey... Thankfully, more in my earlier stages. My MPN turned 4 this May... (well the diagnosis, in any event). If I had a wish to spare, I'd wish it to you...

Stay safe, positive, & well... & keep smiling...

Steve

[LRH1977]

I haven't had a bleed while on aspirin, but found that even taking the enteric coated one was causing really awful acid reflux. My haematologist agreed to swap me to clopidogrel, and things are markedly better with my stomach. I wonder whether an alternative might suit you? Just a thought...

All the best

Lucy

[Belltech1275]

Yes neuropathy affects the lower limbs. It's a burning tingling sensation. Usually doctors will prescribe Lyrica. I refuse to take it because of the many lawsuits of this drug Having been diagnosed 12 years ago I have had Neary every gamut of side effects from this blood cancer. I have huge ulcers form on my ancle bones , painfully as hell similar to Zona..And my plateliets

are in the 450 - 500 range. Headaches, dizzyness , achy bones, extreme sweating , fuzzy vision, but the worst is tinnitus and fatigue. I have both the JAC2 and CALR mutation.

Good luck.