AL Amyloidosis maybe?

Posted by blackscarecrow @blackscarecrow, Mar 9, 2023

Hello. I need help/advice...36 M
For the last 6 months I am having these health issues. To be more specific, I think it all started somewhere in April last year, i was having these problems of dizziness sometimes, upon standing or idk exactly...and my left leg hurt sometimes like from the back of the knee and goes to foot, it still occurs sometimes just like the dizziness as well. Then in October sudden iron deficiency anemia, high cholesterol and tryglicerides and i never had problems with these until now, sudden weight loss, and i cant get any kilos back... Dry flaky skin on my knees and over the heel, soft and vertically ridged nails, arthralgia/crepitus sounds in my knees, occasional bone pain but always same spot (upper arm), and most lately tingling in my fingers of left hand. And I think my tongue is a bit enlarged ,it looks scalloped like. I visited gastroenterologist, endocrinologist, immunologist, and a few more internists. We did like all sort of tests: CBC normal except hemoglobin and hematocrit low, 3x abdomen ultrasound clear, TSH t3 t4 OK, all hormones ok...colonoscopy ok, gastroscopy ok, MSCT of abdomen and torax OK, all ANA/ENA and RF ok. The only thing left is MR of small intestine. Echocardiogram is ok too. They are saying that I am fine and that i need a pscychiatrist. And now this immunologist is saying i am making symptoms up, didnt even wanted to look at my tongue and shes saying i have IBD and she is treating me with mesalazine without any proof I have IBD or Crohns on small bowel. Here is latest SPEP... Idk what to do next...im desperate. Pls help

IGG 14.27 g/l normal 7.00-16.00
IGA 4.74 g/l normal 0.70 - 4.00
IGM 0.81 g/l normal 0.40 - 2.30

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Have you seen a hematologist and had a bone marrow biopsy? That is how my AL Amyloidosis was diagnosed. It is a rare plasma cell disorder that is a "cousin" to Multiple Myeloma. There are other discussions about AL Amyloidosis and you can find them by doing a search of "Amyloidosis" in this Blood Cancers and Disorders category. Going to a large center with experienced specialists in the field of Amy/MM may be your best bet. Hope this helps!

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@countrygirlusa

Have you seen a hematologist and had a bone marrow biopsy? That is how my AL Amyloidosis was diagnosed. It is a rare plasma cell disorder that is a "cousin" to Multiple Myeloma. There are other discussions about AL Amyloidosis and you can find them by doing a search of "Amyloidosis" in this Blood Cancers and Disorders category. Going to a large center with experienced specialists in the field of Amy/MM may be your best bet. Hope this helps!

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Havent seen Hematologist yet... Its kinda hard to get one here where I am from (Europe)... Been waiting for one since November, but soon now im heading to one in April...
Can u @countrygirlusa write some of your symptoms before you got diagnosed pls?

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@blackscarecrow

Havent seen Hematologist yet... Its kinda hard to get one here where I am from (Europe)... Been waiting for one since November, but soon now im heading to one in April...
Can u @countrygirlusa write some of your symptoms before you got diagnosed pls?

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I had no symptoms. Amyloid was an incidental finding in a polyp removed during a colonoscopy. That led to further testing and the diagnosis. Many people have vague symptoms and go to various doctors trying to find out what is wrong with them. Since it is a systemic disease it can cause many different problems. If you google search "Mayo Clinic - Amyloidosis" you will find a good overview of this disease.

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Hi, I made IFE and FLC test... Those are the results..
Ok, results came... Idk what to think...

FLC Kappa 5.80mg/l, normal is 1.4-8.3
FLC lambda 3.70mg/l, normal is 0.64-3.00
FLC ratio is 1.57, normal is 0.99-6.25

With IFE and SPEP no M protein found in any...

Why is then elevated lambda 0.7??

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Hi, what is the difference between turbodimetry and nephelometry in FLC test and why are here ref. intervals different? what does it mean? I read all over that k/l ratio is 0.26 - 1.65 and here is 0.99-6.25...thnx

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