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Could this be Amyloidosis?
I’m 57 years old and my health started to become problematic in my mid 40’s, but 9 years ago, things really picked up pace. I was diagnosed with Sjogren’s Syndrome after a blood test to determine why my arms and hands hurt so much. It was later confirmed via lip biopsy at OHSU. Then I started clotting heavily during my periods, so I have a hysterectomy. I then started having crushing chest pain, but know known heart issue. Then I developed horrible neuropathy and had punch biopsies from the top of my foot to my upper arm that were all positive for sever neuropathy and I was diagnosed with SFN-small fiber neuropathy, bi-lateral. Then I had a massive pulmonary embolism that they thought was perhaps connected to my hysterectomy. But, a year later, once off of my blood thinner, I had another. Then I developed pretty severe heart rhythm issues that kept me sending me to the ER. I finally had my heart shocked/restarted in the hospital because no drugs were helping. My rhythm would go close to 190 and drop to the 30’s. After heart meds, the shock and blood thinners, I still continued to have the same problem, so in January, I had a cardiac ablation. I also had carpal tunnel surgery in both wrists. During this time, I have been holding a ton of fluid in my feet, legs, and abdomen. 5 years ago, I started leaking thin, clear, salty fluid from my right nostril if I lean forward or lay face down, bend over to get into a cupboard, etc. now, it’s both sides, but primarily the right side. Recently, my cPAP hoses have been filling up with this watery substance and I have to get up and shake them out. I get headaches and vertigo, but I can work around it. Lastly, my shins are covered with bumpy, dry plaques that are tight and raised. I have a small number on my arms of random ones.
I feel like every single symptom leads me to Amyloidosis, but my blood test for ATTR was negative 9 years ago, so they brush it off. I FINALLY have a brain MRI on Monday of next week, so hope to find some answers. My former brain MRI’s showed quite a few white spots that the neurologist said were like tiny stroke spots that many older people have. I was in my mid 40’s at the time.
Am I off base to ask for doctors to prove to me that it’s not Amyloidosis?
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what happens after you have tested positive for amyloidosis and just had the bone marrow biopsy? Are they going to go over chemo treatments? Looks like I have AL Amyloidosis
Hi @ump2929, Welcome to Mayo Connect. It looks as though your doctor is concerned that you may have AL Amyloidosis and has ordered testing to confirm a diagnosis. It can take a week or so for all of the results to be returned on the bone marrow biopsy. So I would expect the next steps, once your doctor has results from all of your tests including labs, would be to have a consultation with you regarding the diagnosis and potential treatments.
Members in Connect aren’t able to diagnose or offer treatments but they can share their experiences with others.
I’ve done a search and found several conversations with members that you might want to look through to see if they are helpful for you.
Here is one such discussion on AL Amyloidosis:
~Recently diagnosed with AL Amyloidosis: Any advice?
https://connect.mayoclinic.org/discussion/al-amyloidosis-2/
This is a link to the results of my search where you’ll find several other discussions on AL Amyloidosis
https://connect.mayoclinic.org/search/
Also, below are a couple of informational links on AL Amyloidosis which may help you understand a little more about the condition and possible treatment options. Having a little more knowledge about what’s going on will help you when talking to your doctor. It can also be helpful to make a list of questions that you want to discuss with your doctor so you maximize the appointment. I tend to get sidetracked when chatting with my doctor, so a little list helps me stay on task. Doctors like that too!
From Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
From Cleveland Clinic:
https://my.clevelandclinic.org/health/diseases/15718-amyloidosis-al-amyloid-light-chain
What were your symptoms that lead to having all the tests for amyloidosis? Do you have a date for a consultation?
@loribmt
Thank you so much I do appreciate the advice and answers. I am so new to this as I was diagnosed just last week and had my Bone Marrow Biopsy this past Monday. A wonderful experience , UGH!!!
Ok I will be patient and shre my results next week thanx again
Bruce
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1 ReactionTo anyone, what does the next 3 - 6 months have in store for me and my Family ??? I think Chemo , what should I expect as I go forward ??? Thanx for everyone's help
I would advise anyone who is diagnosed or suspects they may have AL Amyloidosis to get to a "Center of Excellence" as this is a rare disease that most doctors know little about. I went to Mayo Clinic- Rochester as they have a team of doctors from various specialties that work together to treat this disease. After my diagnosis was confirmed at Mayo, they advised my local hematologist the chemo protocol to follow. For me, it was 2 cycles (8 weeks) of treatment, and then a return to Rochester for a stem cell transplant. I would suggest joining the private FB page "Amyloidosis Support Groups(AL-Light Chain- Primary)" as there is a wealth of knowledge shared by followers of this page. The Amyloidosis Foundation is another great source of information. https://amyloidosis.org/al/ Please be aware that many "Dr. Google" searches will give you outdated information. There have been wonderful advancements in the treatment of this insidious disease in the last 20 years. Good Luck and hope this information is helpful.
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4 Reactions@countrygirlusa
How long did it take to get an appointment at a center of excellence. I am lucky on the east coast , I have a few options between UPenn, Sloan or even Columbia all about an 60-90 minutes away
@ump2929
You are fortunate to have those 3 centers of excellence all close by. My appointment took about 6 weeks to get from the time I called. It was kind of a bad time of the year with the Thanksgiving and Christmas holidays, but my appointment was the first week of January 4 years ago.
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1 ReactionMy sister had amyloidosis. She had a lump in her leg which was biopsied. The doctor put her on chemo twice a month. She also had heart problems. She passed away a few months ago at the age of 72. The doctors are saying she had a heart attack. Good luck with your treatment
@lindak123
So Sorry About your Loss....Thanx for the info
@countrygirlusa
Thanx for the Info it will be helpful going forward with this journey
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