Author Topic: Not diagnosed but suspicious  (Read 326 times)


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Not diagnosed but suspicious
« on: March 21, 2021, 01:33:09 pm »
I have had numerous tests and blood tests CT scans head and abdomen and kidneys
I have had numerous blood tests and Bence Jones which showed nothing I think apart from a tiny amount of protein. They were mainly looking for myeloma.
I had gastritis  last week and previously cellulitis. Even the doctors think I’m a hypochondriac.
I have a follow up haematologist meeting but don’t think he did light chains test.

Would amloidisis show up in CT scans or in endoscopy biopsy?
I have had head and sinus CT scan and abdomen spleen and kidney scan and endoscopy biopsy .would any of this show amyloid activity?
I am so worried today as I’ve noticed swollen shoulders and enlarged tongue.
My husband is fed up with me as more months I have been thinking I had all different illness.
I have had carpal tunnel and tingling as well.
I’m so worried and don’t know how to deal with the doctors
« Last Edit: March 21, 2021, 08:40:11 pm by Miriam Vered »

Miriam Vered

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Re: Not diagnosed but suspicious
« Reply #1 on: March 21, 2021, 08:37:14 pm »
I'm sorry to hear you're so worried about your health.
Amyloidosis is a very rare disease, and it is unlikely that you have AL amyloidosis if your blood and urine tests are normal. It is reassuring that amyloidosis was not seen in the endoscopy biopsy. Gastritis and cellulitis are not linked to amyloidosis. CT scans are not diagnostic for amyloidosis, but it is reassuring that these were normal.
Carpal tunnel syndrome is common, and occurs far more commonly in people without amyloidosis.
I recommend that you ask the haematologist about your concerns, including your swollen shoulders and enlarged tongue. If the haematologist thinks that amyloidosis should be ruled out then they can contact the NAC doctors to consult about your case, or refer you to the NAC.
I hope that you find the answers you are looking for about your health concerns.