MGUS diagnosis but could it be coincidental?

[LittleMermaid]

I have been diagnosed with MGUS IGG lambda peripheral neuropathy.  However, I am quite confused as I read everyone's symptoms some fit in but others do not.  For example, it seems everyone complains about his or her feet.  I have NO SYMPTOMS with my FEET.  Mine are:

Muscle weakness in legs-legs buckle at knees (predominantly right leg) and I limp constantly, sometimes I can't walk.

Dizziness, lightheadedness and double vision-it is as if you were trying to cross your eyes

Headaches-which seem to show up prior to severe flare-ups

Leg cramps - especially in the lower front and side leg muscles, thighs occasionally

Muscle tightness - lower legs predominantly

Stabbing pains - legs and arms, sometimes behind left eye.

Freezing constantly - even in 100 degree weather I wear sweatpants and long sleeve shirts. I will sweat but not hot.

Numbness and tingling - in upper thighs and arms only.

Feeling of chills - in legs, which radiates from my ankles up.

Mental confusion (brain fog) - can't think, use wrong words.

Ankles and left hip just give way and I nearly fall - was given Gabapentin and this has stopped that from happening, however, the left hip is beginning to do it again now.  

Family history MS, Narcolepsy, Cataplexy, and Lupus.


Could it be that the MGUS is just coincidental and it is something else?

They stopped testing after serun immunofixation. No Mri of brain,lumbar puncture, lyme test.  Should this not be ruled out?

Seems syptoms (symptoms) worsened after each Hep A vaccines.

Should I have more testing done?

Ang

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.  You should definitely have more testing done.  MGUS stands for Monoclonal Gammopathy of Unknown Significance, thus we don't really know what these proteins are doing.  It is know that they can cause a peripheral neuropathy (usually associated with buring pain in the legs/feet, imbalance and sometimes weakness).  This cannot explain all the symptoms that you are describing. MGUS could potentially explain the "chills" that go form your feet up, the weakness in your legs, falls and numbness/tingling.  It cannot explain your mental confusion, double vision, headaches and dizziness.  I would recommend an MRI of the brain and spine with contrast.  A lumbar puncture would also be albe to test for inflammation in the spinal fluid.  There is a syndrome that can develop after vaccines (called ADEM acute demyelinating encephalo-myelitis) that could explain all of your symptoms and could be assessed by LP and MRI.  I would also recomend that you have a full work up for the MGUS including skeletal survey, and you should discuss a bone marrow biopsy with a heme-onc specialist to rule out multiple myeloma.  I hope this has been helpful.

[LittleMermaid]

I am 44 yrs old, only health problems before this are HBP since age 16, PCOS(1986), lichen planus on ankles since 1989.  

I do live in the woods and used to love to forage can't anymore because I can't walk long distances (still try though).  I have been bitten by ticks many times each spring but doctors say no bulls eye rash - no way lyme disease.

They have only done serum and urine immunofixation, serum and urine electrophorisis, CBC, ANA, ESR, bone scan, lumbar MRI, CT head no contrast, T4, TSH, Comprehensive Metabolic Panel, Creatine, Vit D, Immunoglobulin GAM, Hgb A1C, ASO titer, RA, Uric acid and B12.

All normal except for those`below:
Only the serum immuno. showed monoclonal IGG lambda, the immunoglobulin GAM showed M at 30 mg, ASO titer 434.

Just wondering if maybe they need to look elsewhere and the MGUS is coincidental.

Ang

[Kalio1]

Have you been tested for viral hepatitis? Many of your symptoms are also symptoms of Hep C. Lichen Planus for one. It can be very hard to diagose without an actual hep c test...dont just go by liver function testing as you can have "normal" liver function tests and have Hep. Symptoms often dont show up until it has advanced. I'd test for both hep b and c if I were you.