I too have many symptoms. I have severe peripheral neuropathy from the knees down, and it is starting in my fingers. I suffer from dizziness. I walk with a cane. I have hyperparathyroidism, low vitamin D, osteoporosis, and diabetes.
The Mayo clinic told me 7 out of 10 people with MGUS will develop neuropathy. MGUS does have symptoms, but some hematologist don't know that. Try to see a myeloma specialist, not just a hematologist/oncologist.
Forums
Re: MGUS with lots of symptoms - is that normal?
I was diagnosed with MGUS in 2008 after a cascade of symptoms that you all have described – numbness and tingling in my hands and feet, headaches, dizziness, tremors, muscle twitching, ringing in my ears, debilitating fatigue, vibrations in my legs, etc.
My M protein then was 0.45 g/dL (4.5 g/L) and is now 0.77 g/dL, IgG kappa. I have a lytic lesion in my skull, and there was one in my femur and in my T4, but they are now undetectable on MRI. That seems strange to me that they could just heal or go away. My bone marrow biopsy (BMB) was the most hopeful test, at 0.3% plasma cells. So my onc says I'm still MGUS and after 9 years of 3/6/9 month testing, I'm now tested once a year.
This disease is truly mysterious, but I am certain without a doubt that it absolutely does cause symptoms. They wax and wane, but I always feel something. Ugh.
Wishing the best of health to everyone! Lily
My M protein then was 0.45 g/dL (4.5 g/L) and is now 0.77 g/dL, IgG kappa. I have a lytic lesion in my skull, and there was one in my femur and in my T4, but they are now undetectable on MRI. That seems strange to me that they could just heal or go away. My bone marrow biopsy (BMB) was the most hopeful test, at 0.3% plasma cells. So my onc says I'm still MGUS and after 9 years of 3/6/9 month testing, I'm now tested once a year.
This disease is truly mysterious, but I am certain without a doubt that it absolutely does cause symptoms. They wax and wane, but I always feel something. Ugh.
Wishing the best of health to everyone! Lily
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Ruzalily
Re: MGUS with lots of symptoms - is that normal?
I was diagnosed with MGUS 5 years ago. My hematologist continues to say that my M-protein level is low enough that it should not be causing symptoms. It is 1.0 g/dL. My neurologist disagrees.
I now have Hashimotos, numbness, tingling and fullness in my head, arms and legs. I have blurry vision, essential tremor, and I vibrate while resting. I wake up drenched. I am allergic to everything. My tongue swells, I get hives with intense itching. I can't be intimate with my husband because I swell and itch. In a recent bone density test, we discovered that I am losing bone mass. I feel like I have the flu all the time. If I overexert, it takes hours for my body to recover.
I am on an autoimmune paleo diet, I take Synthroid and GTA-Forte II for the Hashimotos. I also take Klonopin (clonazepam) to sleep.
This stuff is making me crazy. Am I the only one?
I now have Hashimotos, numbness, tingling and fullness in my head, arms and legs. I have blurry vision, essential tremor, and I vibrate while resting. I wake up drenched. I am allergic to everything. My tongue swells, I get hives with intense itching. I can't be intimate with my husband because I swell and itch. In a recent bone density test, we discovered that I am losing bone mass. I feel like I have the flu all the time. If I overexert, it takes hours for my body to recover.
I am on an autoimmune paleo diet, I take Synthroid and GTA-Forte II for the Hashimotos. I also take Klonopin (clonazepam) to sleep.
This stuff is making me crazy. Am I the only one?
Re: MGUS with lots of symptoms - is that normal?
Hi TA41574,
Sorry to hear you are suffering so much.
Have you ever had a bone marrow biopsy and/or been tested for amyloidosis by biopsying another part of your body? A swollen tongue accompanied by an M-spike can possibly be a sign of this disease. Amyloidosis presents with many of the same features as MGUS, multiple myeloma, etc., but can also present with various combinations of unique symptoms such as a swollen tongue, tingling, purple coloration around the eyelids, bruising easily, abnormal heart or kidney function, fatigue, etc.
Given all your symptoms, I might suggest seeking out a top myeloma specialist, if only to get a second opinion about your MGUS diagnosis and get to the root cause of your symptoms. If you let us know what city you are in, folks on this forum can make some recommendations on where to find these specialists.
Best of luck to you.
Sorry to hear you are suffering so much.
Have you ever had a bone marrow biopsy and/or been tested for amyloidosis by biopsying another part of your body? A swollen tongue accompanied by an M-spike can possibly be a sign of this disease. Amyloidosis presents with many of the same features as MGUS, multiple myeloma, etc., but can also present with various combinations of unique symptoms such as a swollen tongue, tingling, purple coloration around the eyelids, bruising easily, abnormal heart or kidney function, fatigue, etc.
Given all your symptoms, I might suggest seeking out a top myeloma specialist, if only to get a second opinion about your MGUS diagnosis and get to the root cause of your symptoms. If you let us know what city you are in, folks on this forum can make some recommendations on where to find these specialists.
Best of luck to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS with lots of symptoms - is that normal?
I, too, have significant symptoms with MGUS. Diagnosed in July with 0.3 g/dL M-spike, IgA 730, bone marrow 5/10% in two samples, but normal free chain ratio and no protein in urine, following symptoms of profound fatigue, muscle cramps, bone pain, essential tremor, vertigo, numbness in hands and feet, and insomnia. Essentially no change at 3 months (M-spike drop to 0.2 g/dL).
I am hypothyroid, struggle with migraine (both for years) and have crazy low vitamin D issues, but bones are healthy thus far based on imaging, MR, densitometry. They just don't feel very healthy! Seeing a myeloma specialist at Dana Farber, a local MT heme/onc, neurologist, internal medicine, and physiatrist, and an endocrinologist at Joslin Clinic. They ALL say my symptoms are not related to MGUS. I just think they don't know any better.
I'm in scientific research, not medicine, and I just don't buy the argument that all of these symptoms are random and unassociated. I have taken 50,000 units vitamin D under careful medical supervision to get my vitamin D back to 90 since July, but after dropping to a "maintenance" dose of 10,000 units daily, I am losing 1 mg/dL per day. Have dropped back to 56 in 30 days while taking 10x the accepted daily dose!!! Something ain't right!
I plan to add a specialist in vitamin D endocrinology and a naturopath to my team after the holidays. I'll say this ... getting my vitamin D above 70 really improved fatigue, cramps, and bone pain, and I hurt when it's dropping. Eating an anti-angiogenic diet and taking 8 g curcumin plus 4 g IP6 daily, along with lots of other vitamins. Trying to exercise, hydrate, and not dwell on this, but it feels pretty distracting at times. Running a small business which involves international travel, and am a research professor. What next? All insight welcome.
Wishing you all sunshine and grace this holiday season.
I am hypothyroid, struggle with migraine (both for years) and have crazy low vitamin D issues, but bones are healthy thus far based on imaging, MR, densitometry. They just don't feel very healthy! Seeing a myeloma specialist at Dana Farber, a local MT heme/onc, neurologist, internal medicine, and physiatrist, and an endocrinologist at Joslin Clinic. They ALL say my symptoms are not related to MGUS. I just think they don't know any better.
I'm in scientific research, not medicine, and I just don't buy the argument that all of these symptoms are random and unassociated. I have taken 50,000 units vitamin D under careful medical supervision to get my vitamin D back to 90 since July, but after dropping to a "maintenance" dose of 10,000 units daily, I am losing 1 mg/dL per day. Have dropped back to 56 in 30 days while taking 10x the accepted daily dose!!! Something ain't right!
I plan to add a specialist in vitamin D endocrinology and a naturopath to my team after the holidays. I'll say this ... getting my vitamin D above 70 really improved fatigue, cramps, and bone pain, and I hurt when it's dropping. Eating an anti-angiogenic diet and taking 8 g curcumin plus 4 g IP6 daily, along with lots of other vitamins. Trying to exercise, hydrate, and not dwell on this, but it feels pretty distracting at times. Running a small business which involves international travel, and am a research professor. What next? All insight welcome.
Wishing you all sunshine and grace this holiday season.
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MTMGUS
Re: MGUS with lots of symptoms - is that normal?
Reading the replies of others who have symptoms similar to mine makes me wonder. Part of the diagnosis of MGUS is that it is asymptomatic. Like others of you, I have horrible symptoms.
In a ten-month period I have had:
Does anyone know of a specialist in the Los Angeles / Orange County area? I want to go outside of Kaiser for a second opinion.
In a ten-month period I have had:
- Multiple spinal compression fractures (two from a sneeze and one from lifting a laundry basket), which led to a 2 inch loss in height, which led to serious G.I. troubles,
- Multiple infections (bed-ridden with bronchitis twice, 3rd incidence of shingles, multiple UTIs,)
- Skin cancer,
- Peripheral neuropathy,
- Fatigue
- and debilitating lower back pain
Does anyone know of a specialist in the Los Angeles / Orange County area? I want to go outside of Kaiser for a second opinion.
Re: MGUS with lots of symptoms - is that normal?
Welcome to the forum, Sarah123. Sorry about the problems you're having getting a correct diagnosis.
There have been lots of discussions here in the forum about specialists in the various parts of California. You can search the forum for "california" or "angeles" to come up with some of these discussions, which I think will probably help the most:
"Myeloma specialists in Los Angeles / San Francisco areas?" (started June 24, 2014)
"Stem cell transplant in California" (started July 15, 2014)
"Thoughts on stem cell transplant centers in California?" (started April 27, 2014)
I'm including links about stem cell transplant centers since many (but not necessarily all) myeloma specialists are located at such centers.
Best of luck.
There have been lots of discussions here in the forum about specialists in the various parts of California. You can search the forum for "california" or "angeles" to come up with some of these discussions, which I think will probably help the most:
"Myeloma specialists in Los Angeles / San Francisco areas?" (started June 24, 2014)
"Stem cell transplant in California" (started July 15, 2014)
"Thoughts on stem cell transplant centers in California?" (started April 27, 2014)
I'm including links about stem cell transplant centers since many (but not necessarily all) myeloma specialists are located at such centers.
Best of luck.
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Jonah
Re: MGUS with lots of symptoms - is that normal?
Thank you Jonah -- that was a very helpful response. I am leaning toward City of Hope.
Re: MGUS with lots of symptoms - is that normal?
Hi Sarah123,
I would also recommend Dr. Berenson in West Hollywood, who is my specialist.
If you are experiencing a lot of infections and have had bone issues that can be linked back to multiple myeloma, then it sounds like you could very well be beyond MGUS. Note that the CRAB criteria for determining symptomatic multiple myeloma is also sometimes referred to as the CRABI criteria ("I" for infection), if repeated infections are part of the diagnostic picture.
I would also recommend Dr. Berenson in West Hollywood, who is my specialist.
If you are experiencing a lot of infections and have had bone issues that can be linked back to multiple myeloma, then it sounds like you could very well be beyond MGUS. Note that the CRAB criteria for determining symptomatic multiple myeloma is also sometimes referred to as the CRABI criteria ("I" for infection), if repeated infections are part of the diagnostic picture.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS with lots of symptoms - is that normal?
I was diagnosed with MGUS about 4 years ago and had multiple symptoms at the time. The doctor told me it should be monitored but did not have any symptoms. I have been having neuropathy in my legs since that time and it is getting worse. In the last year, it is increasing and really disrupting my sleep.
About 9 months ago I saw an older internist in same office and he seemed more knowledgeable of MGUS and problems. He said he had a close friend that had MGUS, than the neuropathy and died of multiple myeloma. He wasn't saying that all MGUS ended in myeloma but rather he understood the problems.
I have been trying to stay off of too many meds but do need to push farther for help since I can't function with the lack of sleep.
Sharon MT
About 9 months ago I saw an older internist in same office and he seemed more knowledgeable of MGUS and problems. He said he had a close friend that had MGUS, than the neuropathy and died of multiple myeloma. He wasn't saying that all MGUS ended in myeloma but rather he understood the problems.
I have been trying to stay off of too many meds but do need to push farther for help since I can't function with the lack of sleep.
Sharon MT
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SharonMT
21 posts
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