Always run down with MGUS

Hi I’ve just seen your post Like you I’ve always been on top of cleaning and other things But I’ve been diagnosed for few years now and I’m not sure if it’s down the MGUS or the fact I have R/A and spinal issues But I get exhausted by lunchtime if I don’t sleep I can’t function for rest of the day I also get terrible Bone pain in my legs and arms I was diagnosed with MGUS before the other issues and the pain in legs seemed to get worse after diagnosis I worry a lot because my blood markers are at 8 and I’ve been told 10 is the limit to start treatment but what treatment chemo or Radiation and what happens next I really hope you feel better soon But I would say Yes there related Debs 62 UK

EASY HELP FOR VITAMIN B12 and also for COLD SORES: at least these work for me.

My PCP recommended Trader Joe’s sublingual vitamin B-12 1000mcg. A little dark red box 3” long by 1”square contains a small plastic bottle of 100 tablets. This works so well that three of these eighth inch tablets per week is excessive. I need only one tablet under the tongue weekly for my B-12 to test normal. Please note. Do not take the similar one with two kinds of B. Choose just the sublingual B-12.

For cold sores: first stick to an alkaline diet. Avoid foods containing sugar. In the past I sometimes got cold sores if I took an imbalanced B complex vitamin. I don’t use that anymore. Now here’s an easy cure-all for cold sores. It least it works for me. From Whole Foods get a small tube dispenser the size of chapstick of HOMEOPATHIC Sulphur 30. When you feel a coldsore starting to try to push up your skin and start a little fever blister on your lip, take 3 tiny balls of Sulphur 30 under the tongue. Follow the directions on the container. That makes the little blister reverse itself and backup as though it went in reverse to become flat then normal again.

Both of these are small over-the-counter remedies which work for me. I greatly help they will work for you. Wishing you well!

Yes, I will look up your MRE type this evening. And look at the Kidney article you referred to. How very special to meet you! I hope you are enjoying your holiday too. We just finished Christmas Eve dinner, prime rib. Yummy.

I will further research your condition. Autoimmune runs in my family too. When I told one of the Urgent Care doctors that I felt like after I turned seventy that I was falling apart, he said, “Your warranty is up.” I laughed and asked him I could get an extended warranty. We both had a chuckle.

I love to laugh and feel the joy of life. It hasn’t always been that way. After the kidney failure, which I recovered from, albeit a little damaged—my last GFR was much better. I now have about 29% function in that left kidney, and my right kidney does most of the work. But my life has taken on new meaning since that and I have seen everything in a better light. Now a new challenge, but I am happier than I have ever was when my body seemed OK.

Blessings to you. You are a trooper. And the weather here outside is wet and cold but as you say, “Sunny in my heart,” and in your heart as well, I expect.

Sincerely,

Nancy Benson

@nancy1900 Nancy, like you, I am a caucasian female, and have long been puzzled by different value ranges I see based on racial identity. Here is an article from the American Kidney Foundation about the differing ranges of eGFR, and I daresay it can be used as an explanation for other values.

Ah, so you are a zebra, also, having conditions that normally do not appear in women! I am also a CKD patient, now Stage 5 and on dialysis. It seems I have always flaunted the "norms", too! My MM is the mre rare type, the cause of my CKD is an ultra-rare autoimmune condition diagnosed less than 50 times worldwide, you get the picture.

Here's to a sunny [if nothing else, in your heart] holiday season to you. i look forward to interacting with you more.
https://www.kidney.org/atoz/content/race-and-egfr-what-controversy
Ginger

Hi again Ginger.

I just read the article on low WBC that you sent me. What I find interesting is that the article said that in black people they said that their WBC tends to run lower. And from what I have read MGUS and MM are more common in black men. I think it is also interesting that in chronic kidney disease there was a different GFR ratio for black people than caucasian. This resulted in poorly diagnosed CKD in black people. I think Scientists are rethinking how they interpret different tests and hope they perhaps rethink the, “WBC tend to be lower naturally in Black people.” statement. Maybe black people are also slowly diagnosed for this disease as they were for chronic kidney disease.

This is just a thought from someone who also has CKD, acquired due to a tennis ball sized cyst which blocked my kidney, and destroyed 2/3 of my left kidney function prior to surgical removal. Diagnosis eluded them as it was a thing that was more common in men then women, and my case was a rarity. It always worries me now when I see things like the aforementioned statement about black people. And I am caucasian. I hope they rethink their assessment that black people naturally have lower WBCs.

I treated the cold sore with Morgan’s lip balm and Tanac for pain plus ES Tylenol for facial nerve pain and other bodily discomfort associated with this virus.

My doctor will start me on B12 shots in three months if the oral B12 is ineffective. He will also check my leukopenia at that time. I have had a flow cytometry done. He has been right on this from the beginning. So far I really trust his judgement. I was diagnosed in October.

Have a wonderful holiday.

Sincerely,

Nancy Benson

@nancy1900 Welcome to Mayo Clinic Connect. It sounds like you have many things going on, and certainly a cold sore can be a symptom of all the stress you are under, as you deal with different conditions! What did you do for that cold sore, may I ask?

As you start your journey with MGUS, you'll read about the shared experiences here from members who are also going through this. The most of us do the watch-and-wait thing, getting bloodwork every three or six months, tracking our situation. That said, it seems like the majority of people go for years without any progression of the disease. My simple advice is to not focus on it, wondering if/when there will be problems. Live your life, eat a healthy diet, get moderate exercise, reduce your stress as best you can.

What questions do you have for me?
Here is what Mayo Clinic has to say about low white blood cell counts:
https://www.mayoclinic.org/symptoms/low-white-blood-cell-count/basics/definition/sym-20050615
Ginger

Maybe “abnormal” ? Did you ask the doctor?

You sound like me. I am newly diagnosed and have noticed a steady decline in my energy level. I won’t go into detail here because I am not that fluent in all the names of things yet. But In addition to MGUS I also got a diagnosis of leukopenia for which my Hematologist/oncologist is treating me with B12 for now and doing watchful waiting. I broke out with a cold sore on my lip yesterday and was feeling quite ill last night, extremely tired and chills, but no fever. I haven’t had a breakout cold sore for a long, long time. But I went through a lot of physical stress last week, sprained my ankle, inflammation of my spine due to my spondylolisthesis . So I chalked the breakout up to the physical stress. I admit in the back of my mind I wondered if MGUS had anything to do with it. I just don’t recover from day to day lime I used to.

Could be an error...I never had a biopsy...I did have pet scans and CT scans of my lungs.
Nothing was ever said about anything abdominal. Ill be sure to ask in February. Thank you!