Burning sensation

Feels as if my body is on a slow burn apologise l just lost a quite detailed post about how lm feeling right now probably for the best anyway anyone have suggestions about how to manage the painful symptom of ET.

Most Grateful

Adiewon

[Mazcd Partner MPNVoice]

hi Adiewon2, so sorry that you are experiencing this, it might be a good idea to contact your haematology nurse specialist for some advice on this.

You said you had a lost a detailed post about how you feel, is it this one:

healthunlocked.com/mpnvoice....

Best wishes, Maz

[Hidden in reply to Mazcd]

Hi Maz not that one, but the same theme, l was trying to post it early around 6am this morning. I have a poor relationship with specialist nurse so going it alone with 6 weekly checks from various hemotogists. Anyway someone on my side l had a call three hours ago with a consultation date with Clare Harrison and on my birth day too,just a month away. Thank you Maz many 🙌 blessingsAdiewon

[SarahPV in reply to Hidden]

Exciting news about Clare Harrison. I’ve yet to meet my consultant but so far not too keen after telephone consultations! Thinking about whether to try and get on her waiting list… hope you’re feeling a bit better today x

[Hidden in reply to SarahPV]

Hi Sarah l find telephone consultations a waste of time and feel so diempowered after them. I asked my consultant how he would feel about me referring myself to Doctor Clare he seemed ok about it but l have to say l haven't spoken to him since just it her random professionals asking me the same old academic questions. I've waited almost a year for my consultation date because of lockdown l know,l chased it up myself and told there was a need for another formal referral letter. Apparently they received this other letter(instigated by me) and as such are able to see me next month.🙏🎉

[SarahPV in reply to Hidden]

So disempowered. I was only diagnosed at Christmas with jak2 pv and just getting to grips with the condition. I had a list of questions for my consultant (just before the results confirmed jsk2) but as soon as he started speaking I knew there was hardly any point asking him. I was 51 at the time (52 now 😊) and he thought it unlikely I had an mpn. He thought I was probably dehydrated at my first blood test. Two months of worrying and now the top man was suggesting I needed to up my water intake. Anyway. I know some people have great team and I’m so glad I just wish I had a consultant I had complete faith in! Fortunately I am lucky with my team of nurses. Feel quite shaky mentally and vulnerable and unsupported. I feel grateful to have found this forum. X

[cmc_ufl in reply to SarahPV]

If you don’t mind me asking, why did he think it was unlikely you had a MPN? What were your platelets at?

[SarahPV in reply to cmc_ufl]

Not at all. I really don’t know why he was so dismissive. I had my appt with him in Oct 21. Bloods taken in August. Platelets 812. Haematocrit 0.53. I asked gp for another blood count after dehydration raised and platelets 813. Called in for venesection and that has been my treatment so far. Trying to get to grips with the condition. I hope you get some answers soon. Sarah

[hunter5582]

Mazcd is definitely on track with contacting your hematologist. Hopefully that doc is a MPN specialist as many regular hematologists will not be aware of how MPNs can manifest in the kind of symptoms you are experiencing.

There are variety of MPN symptoms that may be what you are experiencing: erythema, erythromelalgia, paresthesia, fevers, etc. There are also side effects we can experience from the medications used to treat: rigors, myalgia, etc. When talking to your doc, it is helpful to be clear in describing what you are experiencing. This will aid in diagnosing the issue and implementing appropriate treatment.

Hope you find relief soon.

[Dillyv50 in reply to hunter5582]

Hi Hunter, I've just read your reply to Adiewon 2 and you mention parasthesia as a symptom of ET and wonder if you can advise. I have been trying to establish whether there is a link between my ET and the burning, tingling, pricking and pains I experience in my legs, feet, hands and occasionally elsewhere. Information is thin on the ground. I would appreciate any thoughts you may have. Gill

[hunter5582 in reply to Dillyv50]

Paresthesia and erythromelalgia are both known to be associated with ET and the other MPNs. There are also more subtle microvascular symptoms that are associated with MPNs. The symptoms can be similar but they have a different underlying cause. Paresthesia is neurological. Erythromelalgia is related to how the blood cells behave/interact with the vascular endothelium.

Here is a good explanation of the numbness/tingling issues.

mympnteam.com/resources/num....

Specific to paresthesia.

"Patients with essential thrombocythemia often complain of various subjective neurological symptoms. ... and includes headaches, vertigo, and paresthesia."

ncbi.nlm.nih.gov/pmc/articl...

"Essential thrombocythemia (ET) is a myeloproliferative neoplasm characterized by an increased platelet count, megakaryocytic hyperplasia, and a hemorrhagic or microvascular thrombotic tendency. Symptoms and signs may include weakness, headaches, paresthesias, bleeding, and erythromelalgia with digital ischemia."

merckmanuals.com/profession...

Hope that helps to answer your question.

[Dillyv50 in reply to hunter5582]

Thank you .

[Hidden]

Thank you Hunter will do began today writing a daily blog it will no doubt help me stay focused when l meet up with Clare Harrison next month.🙏

[hunter5582 in reply to Hidden]

Great plan!! 👍👍

[IrishHiker]

Yes, nerve pain is oft described as “burning pain”. Speak with your doctor. Neurontin or some antidepressants are used to treat it…discuss that with them. Good luck!

[Hidden]

This whole business is so depressing l started on antidepressant (sertraline)but after 3 weeks side effects had me crawling up the walls, so decided on a short course of CBT. Has not helped at all with burning pain but did help me manage my moods. Thank you so much for your feedback most helpful.Adiewon

[SoledadBarcelona]

This is your nervous system that is affected. You must take care of your diet, stress, exercise, microbiote, good sleep, drink water, no toxics, etc to calm down it. Scenar and manual massages are good for it. But, the most important is to know the roof cause or the weak point in your body. It can be digestive, intolerances, etc and pay a proper attention on it. It will helps to you body to look for the balance or homeostasis. Being patient is very important.

[Hidden in reply to SoledadBarcelona]

What you said,it sounds as if we may be on the same page.

🙏 Adiewon