@sheker And what did they say was your autoimmune disease? Which form of Amyloidosis? Gelsolin? Alzheimer's? Crohn's? I have the same, except when I yawn my legs go numb and I fall. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" And all my organs are about 10% enlarged, and I have a white matter deposit in the cerebrum cortex, my corneas are going bad, and my teeth are breaking out. And some other stuff. SO, I think I have hereditary Gelsolin Amyloidosis. You?
23 year old male, 6'8", started at 214 lbs in July, now 263. Military lifestyle, married with a daughter, healthy diet, previously plenty of excercise, now absolutely none.
The first sign of anything was August of last year. I got very sick and it looked to be strep throat, had swab and cultures taken and was immediately given augmentin to treat without confirmation. After a couple days and my throat nearly shutting, I called for the results and the guy I spoke to said they came back negative. I went to the ER and they confirmed infectious mononucleosis so I was given a steroid shot and a one week pack and ceased the Augmentin.
[Turned out not to be negative but showed beta-hemolytic non-group A colonies. Could this turn into anything if untreated since I stopped taking the Augmentin?]
Two months and 30 pounds of weight GAIN later, I finally think I'm better and resume normal life. Not long after, I start having extreme cognitive dysfunction and go back to the doctor. I thought maybe I have a thyroid problem with all the weight gain. Thyroid tested fine but monocites were back up. Then it was another rapid decline from there. Cognitive dysfunction, terrible muscle aches, extreme fatigue, awful sweats, joint pain and locking joints, two bouts with vertigo, insomnia, increased urination, dry skin, lack of sex drive (which has come back recently but was gone for half a year), headaches, etc. I'm sure I'm forgetting something, as forgetfulness is another complaint.
After a couple months of this (some days better than others), I finally saw the infectious disease doc I was referred to. He ordered quite a few tests and all that came back abnormal was ANA at 1:180, and off the chart Epstein Barr titres. B12 was also slightly high (930) which to me is strange considering how exhausted I am, but I'm no doctor. Also found low vitamin D (19.7, have been on D2 for 5 weeks). He then ordered the confirmatory ANA tests and again ANA was positive at 1:203 as well as RNP at 2.2. Other titres were normal.
My infectious disease doc referred me then to a rheumatologist thinking Mixed Connective Tissue Disease. She heard a heart murmur so ordered an echo, some xrays of joints and my chest, she also tested for Marfan's, acromegaly, and redid the ANA and RNP as well as a bunch of other things.
Abnormalities with the echo were a dilated right atrium and ventricle, and regurgitation. I had an echo about five years ago that came back completely normal so why the change? Everything else was now normal.....including the ANA and RNP. As soon as I found this out I stomped over to my primary care manager and asked for him to redo the ANA since I've already had two positive ANAs and a positive RNP. Two weeks later I get the results of another high positive ANA, but my rheumy seems to think I'm crazy for thinking one false negative is more likely than three false positives.
I need help. I know it could just be me getting over mono, but it's been so long and I feel so bad and I feel like the symptoms just keep growing.
@aman_23_23 Sad to say, you are experiencing what most of us with an rare autoimmune disease experience. First, you probably have some for of Amyloidosis LiteChain. You have many of the symptoms, and probably many that you have not noticed yet. Here is my story, free for you to learn from. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" Mine is hereditary Gelsolin Amyloidosis. The best sources for learning about this are Mayo.org, Alnylam.Com, NIH.org, the University Hospital of Helsinki, Finland, Boston Amyloidosis center, City of Hope, etc. Contact Mayo, Boston, City of Hope, Anderson, Sloan Kettering, etc., 1-AAA clinics and hospitals. If it is not one of the half dozen clinics in the U.S., stay away until you get your diagnosis. But start today tracking your health just as I have. Read it and you will get the idea for yourself. Finally, you did ask why the change in ANA? Simple. This is a progressive disease. Every time a prion clones, it changes something about you just a little. It may add an attack on a hand tendon, or a cornea, or a testicle. Doesn't matter. It just progresses, and it is up to you and the doc to find the change.
@sheker And what did they say was your autoimmune disease? Which form of Amyloidosis? Gelsolin? Alzheimer's? Crohn's? I have the same, except when I yawn my legs go numb and I fall. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" And all my organs are about 10% enlarged, and I have a white matter deposit in the cerebrum cortex, my corneas are going bad, and my teeth are breaking out. And some other stuff. SO, I think I have hereditary Gelsolin Amyloidosis. You?
Doctor's still doing investigation. ANA came +ve and there's a patchy nodule (2.2 cm X 2.4 cm) in the lungs.Currently I am on Antibiotics (Levoflaxacin).some tests to be repeated after 6 weeks.
23 year old male, 6'8", started at 214 lbs in July, now 263. Military lifestyle, married with a daughter, healthy diet, previously plenty of excercise, now absolutely none.
The first sign of anything was August of last year. I got very sick and it looked to be strep throat, had swab and cultures taken and was immediately given augmentin to treat without confirmation. After a couple days and my throat nearly shutting, I called for the results and the guy I spoke to said they came back negative. I went to the ER and they confirmed infectious mononucleosis so I was given a steroid shot and a one week pack and ceased the Augmentin.
[Turned out not to be negative but showed beta-hemolytic non-group A colonies. Could this turn into anything if untreated since I stopped taking the Augmentin?]
Two months and 30 pounds of weight GAIN later, I finally think I'm better and resume normal life. Not long after, I start having extreme cognitive dysfunction and go back to the doctor. I thought maybe I have a thyroid problem with all the weight gain. Thyroid tested fine but monocites were back up. Then it was another rapid decline from there. Cognitive dysfunction, terrible muscle aches, extreme fatigue, awful sweats, joint pain and locking joints, two bouts with vertigo, insomnia, increased urination, dry skin, lack of sex drive (which has come back recently but was gone for half a year), headaches, etc. I'm sure I'm forgetting something, as forgetfulness is another complaint.
After a couple months of this (some days better than others), I finally saw the infectious disease doc I was referred to. He ordered quite a few tests and all that came back abnormal was ANA at 1:180, and off the chart Epstein Barr titres. B12 was also slightly high (930) which to me is strange considering how exhausted I am, but I'm no doctor. Also found low vitamin D (19.7, have been on D2 for 5 weeks). He then ordered the confirmatory ANA tests and again ANA was positive at 1:203 as well as RNP at 2.2. Other titres were normal.
My infectious disease doc referred me then to a rheumatologist thinking Mixed Connective Tissue Disease. She heard a heart murmur so ordered an echo, some xrays of joints and my chest, she also tested for Marfan's, acromegaly, and redid the ANA and RNP as well as a bunch of other things.
Abnormalities with the echo were a dilated right atrium and ventricle, and regurgitation. I had an echo about five years ago that came back completely normal so why the change? Everything else was now normal.....including the ANA and RNP. As soon as I found this out I stomped over to my primary care manager and asked for him to redo the ANA since I've already had two positive ANAs and a positive RNP. Two weeks later I get the results of another high positive ANA, but my rheumy seems to think I'm crazy for thinking one false negative is more likely than three false positives.
I need help. I know it could just be me getting over mono, but it's been so long and I feel so bad and I feel like the symptoms just keep growing.
Hi Alex, I would love an update about where you're at as of this year. I have almost identical symptoms, except only mild memory issues-like losing track of where I'm going in a conversation or what I was talking about (this might be because I'm totally exhausted though). I'm 36 yo male, 197 lbs, 6'3". I used to row in college, cross-country and tennis in high school. I'm barely able to exercise at all now. ANA 1:180, elevated results over several years and low (but w/in normal range) testosterone are the only biomarkers that my doctors can find. My symptoms are fatigue that lasts all day that has caused considerable issues with work, relationships, and social life, unrefreshing sleep, sleep disturbances, and low-to no libido. I'm getting an endoscopy to rule out celiac disease next month, also have a referral to see a second rheumatologist due to this last elevated blood test. I doubt they will find anything though, it's a total mystery. Life has been very hard these last 5 years. I've even gone to the CFS/ME clinic at Stanford and tried some of their protocol short of the anti-virals, which I'm guessing they'll prob give me at some point. Please provide and update on your health. Thanks-Nathan
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@sheker And what did they say was your autoimmune disease? Which form of Amyloidosis? Gelsolin? Alzheimer's? Crohn's? I have the same, except when I yawn my legs go numb and I fall. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" And all my organs are about 10% enlarged, and I have a white matter deposit in the cerebrum cortex, my corneas are going bad, and my teeth are breaking out. And some other stuff. SO, I think I have hereditary Gelsolin Amyloidosis. You?
@aman_23_23 Sad to say, you are experiencing what most of us with an rare autoimmune disease experience. First, you probably have some for of Amyloidosis LiteChain. You have many of the symptoms, and probably many that you have not noticed yet. Here is my story, free for you to learn from. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl" Mine is hereditary Gelsolin Amyloidosis. The best sources for learning about this are Mayo.org, Alnylam.Com, NIH.org, the University Hospital of Helsinki, Finland, Boston Amyloidosis center, City of Hope, etc. Contact Mayo, Boston, City of Hope, Anderson, Sloan Kettering, etc., 1-AAA clinics and hospitals. If it is not one of the half dozen clinics in the U.S., stay away until you get your diagnosis. But start today tracking your health just as I have. Read it and you will get the idea for yourself. Finally, you did ask why the change in ANA? Simple. This is a progressive disease. Every time a prion clones, it changes something about you just a little. It may add an attack on a hand tendon, or a cornea, or a testicle. Doesn't matter. It just progresses, and it is up to you and the doc to find the change.
Doctor's still doing investigation. ANA came +ve and there's a patchy nodule (2.2 cm X 2.4 cm) in the lungs.Currently I am on Antibiotics (Levoflaxacin).some tests to be repeated after 6 weeks.
Hi Alex, I would love an update about where you're at as of this year. I have almost identical symptoms, except only mild memory issues-like losing track of where I'm going in a conversation or what I was talking about (this might be because I'm totally exhausted though). I'm 36 yo male, 197 lbs, 6'3". I used to row in college, cross-country and tennis in high school. I'm barely able to exercise at all now. ANA 1:180, elevated results over several years and low (but w/in normal range) testosterone are the only biomarkers that my doctors can find. My symptoms are fatigue that lasts all day that has caused considerable issues with work, relationships, and social life, unrefreshing sleep, sleep disturbances, and low-to no libido. I'm getting an endoscopy to rule out celiac disease next month, also have a referral to see a second rheumatologist due to this last elevated blood test. I doubt they will find anything though, it's a total mystery. Life has been very hard these last 5 years. I've even gone to the CFS/ME clinic at Stanford and tried some of their protocol short of the anti-virals, which I'm guessing they'll prob give me at some point. Please provide and update on your health. Thanks-Nathan
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