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Diagnosed with SMM, SPB, or MGUS?

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Covid Vaccination, Nerve Pain, MGUS?

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Thank you kindly for sharing this important and valuable information. Last year, immediately following my 2nd Moderna Covid vaccination my CBC blood test revealed elevated gamma levels in my red blood cells and iron anemia.

Multiple Myeloma First Line Treatment

My Primary Care Physician  told me to ignore as a mere anomaly because all my prior labs including one merely a few weeks before were ALWAYS normal.

Long story short, I persisted, obtained further labs from another MD and ended up seeing a Hematologist for interpretation and diagnosis.

The hematologist immediate diagnosis was Monoclonal Gammopathy of Undetermined Significance aka MGUS. Since then follow-up every 2-3 weeks with repeat labs and have done bone morrow biopsy, scans, etc.

I have been told to just watch and wait because there is NO treatment for MGUS.

However, my neuropathy ‘type” pain, discomfort, sleepless nights, and plain and simple “agony” (especially at nights) is above 12 on a scale of 1-10.

male all joints pain in blue

By the way, I also ended up seeing a Neurologist because of this peripheral pain, which is now all body. The neurologist cannot understand why I am showing neuropathy diagnosis when my A1C is always normal (not even pre-diabetic). I was prescribed Gamabantin. This RX merely drugs me up and does nothing to lesson the pain.

My question, and plead/asking, to you is for HELP to find a way through this never ending nightmare, because my traditional Healthcare providers and specialists are NOT helpful.

Needing answers and help!! In Pain!


Dear In Pain!

I am sorry for all of it- your MGUS, nerve pain, frustration with conventional medicine, all of it. Several issues to consider. As a general comment, much of my info results from research, some from my personal experience, some from anecdotal info from various online groups.

As the first study linked and excerpted below indicates, covid vaccination can cause various peripheral neuropathies. That much is known.

Let me list additional issues.

First and foremost, all stages of pre-myeloma (SPB, MGUS and SMM) are considered by conventional oncology to be “blood disorders” and not cancer. Therefore little research and no therapies are provided by conventional oncology.

Secondly, since the beginning of Covid vaccination, a relatively small group of both myeloma and pre-myeloma (mgus, smm) patients have talked about a vaccination causing increases in either immunoglobulins (IGG,IGA, IGM) or Freelight chains (kappa, lambda). The anecdotal relationship between vaccines and blood markers has been occasional and has returned to baseline- at least according to various people.

Thirdly, there is a documented relationship between MGUS and nerve pain. As you know, MGUS is said to be “asymptomatic.” But many pre-mm patients experience a variety of symptoms- regardless of vaccination status.

Lastly, as I discuss above, I know of vaccinations and possible increases in blood markers and I know of a connection between MGUS and nerve pain but the study below is the first time I have read about documented cases of covid vaccinations causing neuropathies.

Just because I cannot establish a relationship here does not mean that no relationship exists. I’m simply trying to reply to your question methodically.

There are a number of therapies shown to reduce and or eliminate nerve pain- at least for the side effect called Chemotherapy-induced peripheral neuropathy aka CIPN. Less is known about nerve pain as a symptoms of MGUS. As you know, gabapentin is the therapy prescribed by conventional oncology for nerve pain.

If you would like to learn more about non-conventional nerve pain therapies we can do so during your consultation.

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

I have researched and written about nerve pain as it relates to pre-myeloma many times over the years.


Neuropathic symptoms with SARS-CoV-2 vaccination

“Background and Objectives:

Various peripheral neuropathies, particularly those with sensory and autonomic dysfunction may occur during or shortly after acute COVID-19 illnesses. These appear most likely to reflect immune dysregulation. If similar manifestations can occur with the vaccination remains unknown…

Results:

In an observational study, we studied 23 patients  reporting new neuropathic symptoms beginning within 1 month after SARS-CoV-2 vaccination. 100% reported sensory symptoms comprising severe face and/or limb paresthesias, and 61% had orthostasis, heat intolerance and palpitations…

Together,

  • 52% (12/23) of patients had objective evidence of small-fiber peripheral neuropathy.
  • 58% patients (7/12) treated with oral corticosteroids had complete or near-complete improvement after two weeks as compared to
  • 9% (1/11) of patients who did not receive immunotherapy having full recovery at 12 weeks.
  • At 5–9 months post-symptom onset, 3 non-recovering patients received intravenous immunoglobulin with symptom resolution within two weeks…

Conclusions:

This observational study suggests that a variety of neuropathic symptoms may manifest after SARS-CoV-2 vaccinations and in some patients might be an immune-mediated process…”

Gabapentin Side Effects

Commonly reported side effects of gabapentin include: ataxia, dizziness, drowsiness, fatigue, fever, nystagmus disorder, sedated state, and viral infection. Other side effects include: blurred vision, diplopia, peripheral edema, tremor, amblyopia, irritability, and xerostomia. Continue reading for a comprehensive list of adverse effects…”

Peripheral neuropathy and monoclonal gammopathy of undetermined significance:

“Monoclonal gammopathy of undetermined significance (MGUS) is a common benign precursor condition of multiple myeloma (MM) and related disorders.1,2 MGUS is considered asymptomatic but has been shown to be associated with peripheral neuropathy (PN).3 …

We therefore conducted a large population-based study of MGUS and PN. We found PN to be truly associated with MGUS and under-recognized in clinical practice. Furthermore, PN was associated with a 2.9-fold risk of a light-chain amyloidosis (AL)…

 

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1 comment
Michael Cook says last month

Thank you kindly for this thorough reply to my problem(s), as stated above. I am now in the process of going through your very informative, educational, and helpful pre-myeloma program and to be followed shortly by a consultation with you. I am most thankful for finding someone with your experiential knowledge after feeling hopeless and lost. Again thank you kindly.

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