Hi @steffiney, I had Acute Myeloid Leukemia and a subsequent bone marrow transplant 4 years ago. In fact I just celebrated my 4th rebirth day June 28th and feeling 99% back to my old self. Which is quite miraculous considering my odds at diagnosis were not very encouraging. Thank you for saying so, I do quite honestly feel like a fierce warrior but unfortunately, I’m not occupying the impressive body of Wonder Woman. 😂 But pretty proud of how this old bag of bones overcame the continual challenges I deflected with my super powers. Joking aside, it’s vitally important to remain positive, keeping a sense of humor and always looking forward!

The Vitamin D for your MS symptoms is really interesting! I’m glad to hear it’s helping with your symptoms. There are so many new discoveries about the possible causes for MS along with research and treatments. It’s really positive now to have options.
Do you see a hematologist for the MGUS?

Hi steffiney, I am a 56 year old white female myeloma patient, so not the most common demographic, which is male, black, and most importantly around 70 years old-and probably with some organ damage due to age and disease by then. I am young enough and in good enough health not to have kidney damage- and I was not shedding much calcium into my blood yet, as my bones were under attack, but are not such old bones. So your doctor may not have first thought of myeloma, as I gather you are around my age.

I almost didn't reply because I can't be sure to be a faithful correspondent, and you are on a very emotional journey through diagnosis -and then treatment!- right now- and you may write a question or express a feeling, and not hear back: I don't want to promise a dialogue, as I am on my own medical path, and the better I feel, the less likely I'll be on my phone reading and writing on Connect, to be honest: there are a lot of things I need to get done while I'm feeling healthy! So please don't be hurt if I leave you hanging in the future, as it is highly likely, if I have the energy to work and see my new grandchild etc..
That said, I had to write, to say, please get that bone marrow biopsy asap: I too had weakness and tingling in one leg, that came and went. There were a few days where I was literally dragging it up the stairs with me. Then it would seem better. Also, when I had an MRI and then PETscan three months later, it showed a brain lesion- as well as multiple lesions, small still, in spine and ribs. This is what myeloma does. It can affect the nerves a lot. It needs to be treated and stopped in its tracks. So the sooner it is diagnosed, the better the prognosis. And the bone marrow biopsy for me showed that I had very developed myeloma. The only other sign of it, other than rib pain, was in my Mprotein, which was unignorably significant- and moderate anemia which was rapidly worsening with no explanation.

The biopsy allowed the doctor to determine that I needed treatment for myeloma to begin immediately, and I went to a myeloma specialist then.( If you Do end up having MM, that is the best and most important thing you can do to fight it: see a specialist, who will be up to date on treatments, which are evolving rapidly these days, and can actually offer some patients a much better prognosis than one sees on the web, as those statistics are not up to date, being taken from studies that don't include the last five years of research, often - so don't get overly frightened. Though it is a serious beast, and a battle lies ahead).
It's been ten months of treatment thus far, and I feel better than I have for maybe the past two years. I had an autologous stem cell transplant two months ago. My numbers are looking good now, and I have hope of a few years remission. Meanwhile, new myeloma treatments are being studied and approved. It is a truly new era for MM, which is heading towards having a "functional cure" in the next decade, if doctor scientists keep up this extraordinary pace of research.

I hope you Don't have this rather unlikely disease, but if you do, the sooner you know, the better. So get that biopsy done!

I wish you the best of luck with whatever is coming next. Take it one step at a time, and try not to get overwhelmed. Whatever is up with your health, it can only be dealt with gradually, and with care. Value yourself enough to do that, and choose your caretaker doctor as carefully as you can: then relax and follow their lead, while knowing that you will have unique responses and side effects, that only you can note. If you don't communicate, they can't adjust. And there are options for treatment, to some extent. So be brave, and ask for what you need.

Good luck on your journey!