[Joanna-H]

Well that's unfortunate

by Joanna-H on Thu Aug 30, 2018 12:44 pm

Hi,

I'm Joanna. I'm 45, divorced with (almost) 10-year-old twin boys and a self employed funeral director in New Jersey. I love long walks on the beach, sunsets, and puppies. No I don't. I hate sand. I have some pent up snark, and I use humor as a defense mechanism. I do love puppies though. Who doesn't?

I found out I had MGUS by accident. I had been feeling poorly for well over a year; aches, pains, brain fog, tingling in my fingers and feet and across my back (bra strap area). Random joints would "flare up" and give out, sometimes for a few hours, sometimes for a few days.

I went to a rheumatologist and had blood work and x-rays. I was fine except for my M-spike, which came back at 0.7 g/dL (7 g/l). It's usually an indicator of cancer, he said. You should go to an oncologist. And he sent me on my way with a prescription for Lyrica. Needless to say, I never filled the script and I never went back.

I followed up with an oncologist-hematologist and was diagnosed with MGUS.

So, I count my blessings that it's "only" MGUS.

I go through periods of being fine to being depressed (in the clinical and emotional sense) by my lack of stamina and brain fog.

I'm reconciling the fact that at 45 I have "aged" rather quickly. Just 2 to 3 years ago, I could run a funeral, take care of my boys, mow the lawn, replace molding, do laundry, and get up and do it again the next day like it was nothing.

Two days ago, I put together a cast iron and wood industrial-style dining room table, and I am still recovering.

Again, I'm counting my blessings. I can still put a damn table together.

I am also struggling with looking like me on the outside, but no longer being me on the inside. I have a hard time getting people that are close with me to realize that I may look fine, but there are days I do not feel fine. I think that is the hardest part , being invisible sick. With the exception of major bruising and the random limp from a hip or knee, I look just fine. I'll look even better next week when I go and get my hair highlighted; that's a 5-hour ordeal and one I never looked forward to even when I was able to sit that long. Again with the blessings. At least I get to sit there. My poor hair dresser has to stand!

So, that's my story. I'm glad to be here. Not really, but you know what I mean.

In the time it took me to type this, my boys have fallen off the stools of the above-mentioned industrial-style dining room table 1.5 times each. One of them fell off twice. I stopped asking if they were ok after the second time, and with two boys it's easier to average injuries.

So, thanks for reading. I'm looking forward to soaking up the wealth of accumulated knowledge here, and maybe someday when I understand rates, ratios, kappa, creatinine and all the other words thrown at us, I will be able to contribute something back.

J -

[vicstir]

Re: Well that's unfortunate

by vicstir on Thu Aug 30, 2018 7:29 pm

Hi Joanne.

Your post struck many chords with me. We have much in common. Our age, 10-year-old children, for all outwards appearance healthy. With the annoyance of not quite healthy within.

Whilst the physical is challenged, I have found the mental at times intolerable. Persons outside of communities like this cannot put two and two together. In that how you look is sometimes far from how you feel. It's not their fault.

So know that you're not alone and you can call on this community for advice and support any time.

Take care,
Vic

[Mank]

Re: Well that's unfortunate

by Mank on Wed Sep 05, 2018 12:06 pm

Joanne,

Don't ever doubt it, humor shall be your savior, now and down the road! You need to maintain that "glass is half full" attitude. I can't stress how important these things are.

[lakehurstfarms]

Re: Well that's unfortunate

by lakehurstfarms on Sun Sep 09, 2018 4:37 pm

Hi and welcome to the forum!

I too have MGUS and a daughter who is just about to turn 9. I was diagnosed 3 years ago after falling ill with several different things. I also had a Bartonella infection that I have since healed from. Almost all of the symptoms you have are what I was experiencing. The only thing still hanging around is my IgG kappa MGUS. I have my 1-year check up in 2 weeks.

[bodumene]

Re: Well that's unfortunate

by bodumene on Mon Sep 10, 2018 9:37 pm

Hi Joanna,

I was sorry to read about the symptoms you are having. I had a couple of thoughts that might be helpful.

First, I had not heard that the symptoms you describe are typical of MGUS. I had MGUS for several years with no such symptoms. I was told that it was pretty much a benign condition, and required no treatment. The danger, of course, is that eventually it could turn into multiple myeloma, as mine eventually did. About 1 to 2 percent do each year, so that means you have a greater than 98% chance, each year, of it remaining insignificant.

In any case, the symptoms you are having may not be related to the MGUS. If you had said you were on the drugs that are commonly given for multiple myeloma, I could understand. But, unless I am misinformed, not MGUS. Therefore, perhaps it would be of value to consult a different doctor, maybe in a different specialty. You indicated you had blood work that showed you were fine, but obviously, you are not. Something is wrong, and I believe you deserve a more thorough look to find out what it is.

The standard blood panels do not tell everything. There are things, from nutritional deficiencies to gut flora, etc., that are ordinarily not tested for.

Another thing I wondered about is why you dismissed the doctor's recommendation of Lyrica. It is usually given when they suspect something like fibromyalgia or a neuropathy of some sort. It should calm your nerves down, and might be worth at least trying. Or perhaps a visit to a neurologist might be useful.

In any case, I hate to see you suffering from these symptoms without good medical help. Of course, I am not an expert, but I really doubt they can all be attributed to MGUS. Or simply "aging". Did your oncologist think they were MGUS related?

I myself suffered from some pretty awful symptoms (unrelated to the cancer), that were mis­diag­nosed or ignored by several doctors for years. I finally found a doctor who knew exactly what it was. It turned out to be a dopamine deficiency. A little tiny pill, with no discernible side-effects, took care of it the first day!

I wish you the best of luck, and remember, you really deserve to feel well!

bodumene