← Return to Anyone else have Symptomatic MGUS?

Discussion

Anyone else have Symptomatic MGUS?

Blood Cancers & Disorders | Last Active: Nov 28, 2023 | Replies (73)

Comment receiving replies
@flgirl

Just an update, sorry no new clinical findings. It's been a long rough week, and thankfully, it is almost over. I have had dealings with a few snarky office staff, but at the end of the day I feel as if I have some satisfaction with a referral and appointment next week, (amazingly), to a new haemotologist. I had bloodwork to re-check the low platelets/high MPV, and also to confirm what I believe is RA. Blood work at an ER visit did confirm the RA but the nurse said "she" can't refer me until the blood work is back. I tried to tell her, that it was confirmed at the ER, and she just kept talking over me. It is very hard to get your concerns addressed, and taken care of, when you come across staff that conducts themselves in such a manner. I try to treat people as I would like to be treated and when they treat me as she did, I treated her the same way. Maybe I was wrong, but this is my health, not hers, and I don't deserve to be treated like that. I am sick and tired, of being sick and tired, and I don't tolerate nasty attitudes at all. They say when people treat you poorly, it says a lot about them, and not yourself. I wrote a long letter to my GP doctor, also mentioning neuropathy, that has gone from my feet to my hands and arms now. Very frustrated, and know that this is progressing, and can cause many serious, long-term problems, if not treated. Glad I am a survivor, and ready to stand up for myself, at any point, no matter the road blocks. I am also thankful, and glad to have connected here. I am learning a lot, and have found some answers. Does anyone have a taste bud issue? Everything, even sweet things, give me that sour reaction you feel in your jaws. This is a new symptom, and through research, I think it may be related to Sjogrens Syndrome. That autoimmune disorder, also has swollen lymph nodes. I have had swollen lymph nodes in my throat, which I have been asking about, for at least 6 or 7 years now. It is nice that I have finally, maybe, figured out some of these symptoms. I am hopeful that I will get answers from the new hematologist, referrals, and finally treatment for the symptoms I have been reporting, I jokingly asked in my letter to the GP if I would get a discount, or no copay for self-diagnosing. It really takes a lot to remain optimistic, and to fight for care, but at least I know tomorrow is a brand new day, and I have so much to be thankful for. Take care all!

Jump to this post


Replies to "Just an update, sorry no new clinical findings. It's been a long rough week, and thankfully,..."

I’m really sorry, and very disappointed as well as exasperated to hear this is happening for you ❤️‍🩹
However, I am really wanting to high five your resilience 🙌🏻 through what for all intents and purposes what sounds like a perpetual quagmire of apathy and resistance to your needs 😮‍💨
I also have taste distortion which I’ve been told is in my imagination (haha, honestly!) and have also read it’s related to Sjogrens.
I really hope the new referral leads to some practical investigation and help 🙂🌺
A discount for all your leg work would be very nice! 😀
Please do let us know how you get on 🌺
I’m glad to be here with you guys - happy days we have each other to speak with 😊