[christophe]

Male, 37 years old, MGUS Iga kappa

by christophe on Wed Apr 22, 2015 2:54 pm

Hi All,

I am new to this forum. I am 37 years old and I was recently diagnosed with MGUS, IgA (0.7 g/dL).

In October 2014 I started having pressure headache all over my skull with muscle twitches in my calves. After 6 months, the headaches seems to have resolved, but the muscle twitches, numbness / tingling feeling has expanded. I also feel dizzy often and randomly get palpitations, chest pain and muscle pain in my forearms .

I have done many tests to understand what's going on:

• Brain CT scan / MRI : Normal
• CBC: Normal except platelet on the lower side (130-140)
• Lumbar puncture: CSF protein elevated : 55. Presence of 1 oligoclonal band
• EMG/NVS: Normal (at least that's what I was told; I haven't seen any report)
• Abdominal ultrasound: Mildly enlarged spleen
• Electrophoresis: IgA Kappa, 0.7g/dl; light chain ratio in normal range.

In addition I have an history of blood-related issues. When I was 7 years old, I had an ITP [idiopathic thrombocytopenic purpura]. My platelets were very low, and I was bruising easily; no other symptom. It resolved by itself. At 16 years old, out of the blue, I got a blood clot in my left forearm. No other symptom, but I needed surgery,

I am very scared that this could be all connected.

1. I read on a lot of medical resources that MGUS is asymptomatic, but I had all the symptoms. (Maybe they are all unrelated?) and I read multiple stories from people having similar symptoms with MGUS. Do you have symptoms with MGUS, and what helps you to feel better?
2. Is there a connection between the monoclonal gammopathy and the oligoclonal band in the CSF?

Appreciate any of your feedback / input. I am scheduled for a bone marrow biopsy on Monday and hope the results will be ok.

Best,
Christophe

[Dr. Prashant Kapoor]

Re: Male, 37 years old, MGUS Iga kappa

by Dr. Prashant Kapoor on Thu Apr 23, 2015 12:18 am

Hello Christophe,

I am sorry to know about your medical issues.

Oligoclonal bands in the CSF can occur in many diseases, including multiple sclerosis (MS), lymphoproliferative disorders, Lyme disease, autoimmune disorders, etc. Therefore, they are not specific for any one disease. If clinical suspicion for MS is high but results show only a single band on isoelectric focusing, repeat testing of CSF is usually recommended. There have been reports of MS coexisting with MGUS.

I certainly agree with performing a marrow biopsy. The presence of MGUS and CSF band could be related. It would be best to be evaluated by an expert hematologist and a neurologist to sort these issues out.

[christophe]

Re: Male, 37 years old, MGUS Iga kappa

by christophe on Mon Jun 29, 2015 3:27 pm

Thanks doctor.

Here is the result of my BMB:

A male karyotype without detectable abnormality was revealed in 19 of 20 meta­phase cells and the remaining cell showed non-clonal loss of the Y chromo­some. Inter­phase FISH analysis showed a normal result with no evidence of FGFR3/IGH, CCND1/IGH and IGH/MAF gene re­ar­range­ments, gain / ampli­fi­ca­tion of 1q21(CKS1B), deletion of 13q(DLEU1) / monosomy 13, or deletion of 17p(TP53), in 200 cells examined with each probe set.

Correlation with other laboratory and clinical findings is recommended.

Neurologists I saw don't think I have MS or ALS.

I also did a FAT pad biopsy to rule out amyloidosis

Headaches are gone but my twitching is getting worst. Legs never stop and get crampy from time to time. Could this be a symptom of the MGUS IgA kappa? Anything I can do to reduce / stop them?

[flamingokaren]

Re: Male, 37 years old, MGUS Iga kappa

by flamingokaren on Thu Aug 06, 2015 3:04 pm

Hey Darlin'

I am also IgA kappa, post Lyme and anticardiolipin - an autoimmune condition with clotting problems. I have done very well over several years. Good luck!