WAITING

[indy22]

I have developed pain in my upper left back, very sore feet at night when I go to bed also numbness in my legs along with all the usual symptoms that go along with MF! As you know I haven't been started on any medication and was diagnosed in June. I am getting worried now that maybe leaving things to late, been hearing a lot about to late with cancer patients. My next appointment is 5th October with haematologist, in the meantime I am sitting waiting for a call back from GP which has took me ages to get through to ! Really this is getting beyond a joke now .

[shiela23]

How did you become diagnosed mf? I have et and we have same symptoms.

[indy22 in reply to shiela23]

I got a BMB result was my ET had mutated into MF

[shiela23 in reply to indy22]

What is your treatment? What platelet counts are you now?

[indy22 in reply to shiela23]

Haven't started treatment, I had a scan on my spleen and liver will get results when I go back for my appointment on the 5th then see of I get any treatment!

[indy22 in reply to shiela23]

Sorry I don't know my platelet count I will try and remember this time to get my haematologist to write it down because I forget everything these days 🙄

[EmeraldA]

Could you maybe try for an appointment sooner that the 6th October?

[indy22 in reply to EmeraldA]

No I am lucky to get this appointment 🙄

[YBSx]

HelloI have ET & jak2 positive.

I experienced a lot of upper left back pain. This pain was just under my scapula it was never seen as a side affect of my condition and it was treated as indigestion, however on reflection I do feel it was a side effect because Since I’ve started treatment of Hydroxycarbamide the pain in my back has gone.

I do get pain my hand and feet and I also get numbness and pin and needles in my feet and legs. My Hematologist doesn’t seem concerned when I tell him about this which isn’t helpful.

Good luck hope you get this sorted out soon

Yvonne

[Runner999 in reply to YBSx]

The haemotologists just seem to try to get people's blood levels under control.They do not seem to deal with any symptoms, other than possibly trying different meds in extreme circumstances or after a certain time.............

[MaggieSylvie in reply to YBSx]

It probably isn't connected to MF. I had something similar and was given physiotherapy. Four years later, it has been diagnosed as a compression fracture (caused after I fell hard on my bottom) and it is angulated and too late to correct it. A physiotherapist arranged an MRI that showed four fractures in my spine. We have to be aware of what problems our symptoms are showing us and act quickly. I'm not saying what you have is more than a sprain or indigestion but we get shuttled off to a gym for anything we report. I don't think GPs have the time to care in their caring job.

[hunter5582]

Sorry to hear you are having such a rough go of it. I must say I am a bit baffled that you received a MF diagnosis and the hematologist did not initiate a clear treatment plan in June when you were diagnosed. Delaying your treatment plan four months is an unacceptable level of care.

Given what you have described, I would expect your diagnostics would have included imaging of your spleen and liver. Were you positive for splenomegaly and/or hepatomegaly? Does the pain in your feet appear to be microvascular (e.g. erythromelalgia-like) or neuropathic (e.g. peripheral neuropathy)? There are potential solutions depending on the cause of the pain. These are key questions to get answered ASAP. It is not OK to be in pain. It is not acceptable for a system of care to fail to respond in a timely fashion to your situation.

Assertive patients receive higher quality care. Passive patients do not. We have to be willing to advocate for ourselves and require the systems of care to provide appropriate care. Inadequate care can only continue when it is tolerated. It sounds like the time for tolerance is long past being over. It is time to push the system for a more appropriate response. This may involve calling the ombudsman/patient advocate in your system. It my involve filing a formal complaint. Do whatever it takes to receive the care you need.

Your care team should involve a MPN Specialist, not just a regular hematologist. If this is not already arranged, suggest setting up a consult with a MPN-expert doc ASAP. Here is a list. mpnforum.com/list-hem./ .

All the best.

[Hidden]

Hi Indy l can relate, waiting for feedback and appointments after a recent diagnosis is very challenging but you know the thing about waiting for ages for a bus then 3 come along at once. Take care and good luck.Adiewon