Light at end of tunnel …

[Anouchka]

A huge Thank You! shout out to all knowledgeable leads and help on this Forum. Esp the advice to advocate for myself. Arranging a second opinion didn’t go down too well with my heamo/oncologist but it certainly gave me more insight and some suggestions to have more looked at.

For one, a neurologist has found that the excruciating pains in legs, ankles and/or toes are not all a side effect of my PV!!! I’ve got carpal tunnel in both feet and some metatarsal inflammation between toes and will need orthopedic soles….

Don’t want to bore you with all the details, including some abdominal and pelvic anomalies …

Suffice to say it wasn’t all in my head after all. Thank you, again, for giving me that push and extra courage to keep pursuing.

Good health to you all - we stand united in our quest for continuing to live life as best we see fit and not giving up.

[hunter5582]

I am very happy to hear that you are getting the answers you need. You are proving that assertive patients receive higher quality care. Congratulations. Long may the success continue.

[Anouchka in reply to hunter5582]

Thank you for taking the time to reply Hunter. You’re a real inspiration to us all. Be well!

[Spanelmad]

Good for you!! You've inspired me to try and get an answer out of the neurologist, will ring his Secretary to do battle in the morning

[Anouchka in reply to Spanelmad]

Good! And good luck!

[Spanelmad in reply to Anouchka]

Still awaiting a response as had to leave a message on the answerphone. Following up with an email today.

[Anouchka in reply to Spanelmad]

Keep fingers crossed!

[lizzziep in reply to Spanelmad]

Isn’t it ridiculous that we have to battle to get information and help for our health!

[Anouchka in reply to lizzziep]

You said it - and they’re the “specialist(s)”! Sorry, my sarcasm is showing! 😂

[lizzziep in reply to Anouchka]

You’d think it was the secret service!

[Anouchka in reply to lizzziep]

😂😂😂👍🏽

[Exeter21]

well done we have all realised that without questioning Drs & our treatments & researching ourselves we could be left on the shelf . I am glad I pushed for MPN despite Haemotology were annoyed, I did & got the medication change that was so important to me . The change to Interferon completely improved the horrendous exhaustion & sickness caused completely by Hydroxy that my body would not tolerate. Well Done . 🤗

[Anouchka in reply to Exeter21]

You too!

[Mostew]

Well done . It feels good to have a say in our own health.

I know it's exhausting but worth it when we see benefits..

[Anouchka]

sure does Mostew now the “worst” is to make the decision of changing if to a more thorough oncologist/haemo since I’m not really dissatisfied with my present one but always feel he just keeps tabs on my stats and then writes out the prescription for the next period of my mes until we meet for the next appointment. The change means a 2hour drive getting thee and then back again, plus appointment but I’m beginning to lean heavily towards it to be in “better” hand hands. 🤞🏼🤞🏼

[Mostew]

Definatly worth the trip. Is there anywhere nice you can stop of for a treat afterwards ? !

[Anouchka in reply to Mostew]

🤣🤣 wonderful idea!