myamylostory

A Strange Voyage called MM&AL

Georgia

A Strange Voyage called MM&AL

Id like to start my story with note :” Sorry for my English – Not native one”; I live in the one beautiful old country, located at the intersection of Eastern Europe and Western Asia. It is a part of the Caucasus region, bounded to the west by the Black Sea. My country has old , rich, interesting history, culture, traditions, unique types of wines and delicious cuisine.
Since childhood I grew up as a sports child, without chronic diseases and other modern bad habits… as they say , everything is within the bounds of decency and law. After a series of stressful situations associated with changing jobs amid a pandemic I found new interesting company, I was employed and in parallel with work I was involved in trainings and learning programs related to my new job . Exactly this period coincided with starting my medical investigation.
One Morning I looked at the mirror and found bright red little spots ( petechiae) in the inner part of my eyelids, simmetricly. It was strange but I did not pay attention on it and continue daily routine. In a few days the spots disappeared and I forgot about. But periodically these spots began to appear turning into a bruise. Can you imagine? New job, new colleagues and Im every morning with a bruise around the eyes😊 . When that took on a regular character I applied the Ophthalmologist . So started my journey…. A visit to the ophthalmologist gave nothing, I was redirected to Dermatologist, later I visited Angiologist, Rheumatologist, Hematologist.. conducting appropriate analyzes everywhere . Nobody of them saw suspicious. All blood test was/is perfect, Im fit , I have only cosmetic problem – appearing/ disappearing spots on my eyelids.. Oncologist ? – this specialist not even was in my thoughts. People around tell me – Don’t worry , that is not problem , this is vessels burst only related with physical activity, maybe age Im +50 and so on…But I was already under the stress of uncertainty, since six months passed but the reason of red spots is uknown. I did not know who apply for support and help.

I was told that in my country this desease is know only in theory, someone listened about Amyloidosis attending medical conference, no statistic date, no experience of treatment, patients management, social and medical support of patients.

I don’t know on what grounds, but I started to feel short of breath and visited Cardiologist and Restructive Cardiomyopathy (left ventricle – 18 mm) was found with suspicion of AL Amyloidos. I was told that in my country this desease is know only in theory, someone listened about Amyloidosis attending medical conference, no statistic date, no experience of treatment, patients management, social and medical support of patients. Cardiologist found in Google list of blood tests for Amylodos diagnostics (Serium and urine Immunoelectrophoresis, Fat Biopsy with Red Congo, Heart Biopsy), but I coud not find within my country labotratory and diagnostic center to do; With difficulties I reached one local blood clinic and got uncertain result; Finally I reached laboratory to send my blood in Germany. Under the pandemic restrictions the price of this service was double-high and took 3 weeks; Result was – Bence-Jones proteins in serium and urine , Lambda is very high and Ratio is 0.01. AL Amyloidos deposits found – suspected. Heart Biopsy is not doing in my country. And in this way I met Oncologist that after bone marror biobsy and full body MRI announced my diagnos – Multipile Myaloma, Need to start chemo and Im candidate for SCT. I did not trust , but started standart chemo treatment not realizing that Im ill. After the forth block I was put in remission and my Oncologist announced me that you are directing to SCT with Note – If you are not do it I not cure you, will not back to me. That stressed me As I know SCT is option and patient must to do decision, at least have time to think over details and plan next steps. Every next day my oncologist and doctor from SCT Hospital was calling me, write sms with inventation to visit to discuss SCT procedure. My Oncologist called me and inform if I not do SCT my mother will lost her son… One my friend recommended me good oncologist and I decidet to get second opinion new. New Doctor X. looked my case , took mobile phone and called to SCT Hospital and announced : The SCT for this patient is crime.. and later told me : Do you think they are directing you get SCT for your health? Could you imagine my conditions. I was involved in confrontation of medical personal. In two hours my oncologist called me hysterically with words – why did you go this stupid doctor… and never be back me for treatment. In two weeks Doctor X. changed oipinion and recommended to get SCT. Awful situation… I really don’t know what to do – To be continued … ….OMG

A Strange Voyage called MM&AL – Levan – Georgia