Sorry it took so long to respond, I didn't realize people ever responded.
I do have a few updates, I guess.
My forgetfulness got really bad for a bit there. At one point I forgot who my wife was as I was talking to her, 1 foot from my face. It lasted about a minute but I came around. That was one of my worst days in the past 2+ years.
I saw a neurologist, who after a bunch of normal test results was convinced it was psychological. He gave me the option to do a lumbar puncture and I took it. That was the most disgusting, belly churning feeling of my life...and it came back normal.
They referred me to a different rheumatologist, who was much better than the first. He ran the same tests as before but my ANA and such were negative. He didn't write me off though, but prescribed Lyrica and gave me a week's worth of free samples while I waited for insurance to clear it. Insurance said I had to try gabapentin first. Lyrica really improved my sleep, but nothing else. Gabapentin threw me right back into terrible sleep. I went back after a month and he switched me to colchicine. I don't know why, but colchicine really helped a lot. It gave me good sleep, helped my joints, and I haven't been nearly as confused. I'm still tired and if I forget to take my medicine, I sure notice it, but I'm doing alright with just colchicine and atenolol (for my heart).
I don't have a diagnosis, and colchicine isn't normally used for this kind of stuff (it's actually gout medicine), but my life is moving forward again, SLOWLY.
I was medically retired from the Air Force this year due to all this stuff and my wife and I came up with a plan to convert a school bus into our home. We're going to travel the country when the bus is finished and she's out of the military.
Thank you so much for sharing your progress; I'm sure other Connect members will appreciate it too. And, your future plans of traveling around the country in a retrofitted school bus...WOW!
Here's some information from Mayo Clinic, about colchicine which may interest you: http://www.mayoclinic.org/drugs-supplements/colchicine-oral-route/description/drg-20067653
As you will see, it is prescribed mainly for treating gout, and is also used to treat a rare condition called familial Mediterranean fever (FMF). @aman_23_23 may I ask why your doctor has prescribed atenolol (beta blocker) for you? We're glad to know you're feeling better, and look forward to hearing back from you.
Thank you so much for sharing your progress; I'm sure other Connect members will appreciate it too. And, your future plans of traveling around the country in a retrofitted school bus...WOW!
Here's some information from Mayo Clinic, about colchicine which may interest you: http://www.mayoclinic.org/drugs-supplements/colchicine-oral-route/description/drg-20067653
As you will see, it is prescribed mainly for treating gout, and is also used to treat a rare condition called familial Mediterranean fever (FMF). @aman_23_23 may I ask why your doctor has prescribed atenolol (beta blocker) for you? We're glad to know you're feeling better, and look forward to hearing back from you.
My cardiologist prescribed atenolol close to the beginning of all this to lower my heart rate and take stress off my heart.
I didn't know colchicine was also used for Familial Mediterranean Fever, now I want to look into that. My mom's side of the family is from that part of the world.
Have you found out anything regarding your condition? My son has been dealing with not feeling well for about a year, and primary said it's all in his head even though he has positive ANA and same symptoms as you had
"Cognitive dysfunction, terrible muscle aches, extreme fatigue, awful sweats, joint pain and locking joints, two bouts with vertigo, insomnia, increased urination, dry skin,(didn't ask him about this one! lol) lack of sex drive "
We have an appt with a rhematologist on May 22nd, but are really frustraed with lack of knowledge. Any info would be appreciated.
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Apr 24, 2018
Welcome to Connect, @buckywebb. I can only imagine your frustration with the "primary said it's all in his head..." and I'm glad to know that your son will be seeing a rheumatologist soon.
Welcome to Connect, @debdeb. Thanks for joining the conversation. I appreciate the insight and advice @johnbishop provided to @aman_23_23 earlier. I'm also providing some information from Mayo Clinic on ANA - it includes different resources offered by Mayo as well as tips/advice for what you can expect during the test, following the test, etc. (http://mayocl.in/1gcCt8h). Even though you have gone through this before, I thought it would be an additional resource for you.
Do you have a solid support system or hobbies that you're able to participate in? Keep your spirits up!
I feel your pain. I have to cancel appointments with friends all the time. I force myself to get out because mentally it’s better for us. I’m a couch potatoe too...almost 18 months.
Welcome to Connect, @debdeb. Thanks for joining the conversation. I appreciate the insight and advice @johnbishop provided to @aman_23_23 earlier. I'm also providing some information from Mayo Clinic on ANA - it includes different resources offered by Mayo as well as tips/advice for what you can expect during the test, following the test, etc. (http://mayocl.in/1gcCt8h). Even though you have gone through this before, I thought it would be an additional resource for you.
Do you have a solid support system or hobbies that you're able to participate in? Keep your spirits up!
I'm a little late to the game here. I also have been experiencing very similar symptoms and my blood work came back for the first time with a positive ANA a little over a year ago. Doctors were stumped, I moved, and have just been managing my symptoms day by day. A few weeks ago I stumbled on an article (I tried to find it to share but couldn't find it - I'll keep searching) on Lyme disease sometimes mimicking autoimmune diseases - causing a positive ANA and displaying symptoms similar to the RA & Sjogren's. After digging a little bit more into Lyme disease I found myself identifying with a lot of the common symptoms. For those of you also on this crazy medical journey, have you been tested for Lyme disease OR have your doctors discussed it with you?
I'm a little late to the game here. I also have been experiencing very similar symptoms and my blood work came back for the first time with a positive ANA a little over a year ago. Doctors were stumped, I moved, and have just been managing my symptoms day by day. A few weeks ago I stumbled on an article (I tried to find it to share but couldn't find it - I'll keep searching) on Lyme disease sometimes mimicking autoimmune diseases - causing a positive ANA and displaying symptoms similar to the RA & Sjogren's. After digging a little bit more into Lyme disease I found myself identifying with a lot of the common symptoms. For those of you also on this crazy medical journey, have you been tested for Lyme disease OR have your doctors discussed it with you?
Hello @adrianna23, welcome to Connect. I did some searching for you and am wondering if one of the following articles may be the one you are referring to:
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.
what was the diagnosis in your case? I've ANA +ve and found nodule in the lungs. My symptoms are muscle pains, ribs pain,sleep problem and dry eyes.
When I breathe, yawning, sneezing it hurts my back. also frequent burping. ANA was negative 10 months ago and now came positive.
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Sorry it took so long to respond, I didn't realize people ever responded.
I do have a few updates, I guess.
My forgetfulness got really bad for a bit there. At one point I forgot who my wife was as I was talking to her, 1 foot from my face. It lasted about a minute but I came around. That was one of my worst days in the past 2+ years.
I saw a neurologist, who after a bunch of normal test results was convinced it was psychological. He gave me the option to do a lumbar puncture and I took it. That was the most disgusting, belly churning feeling of my life...and it came back normal.
They referred me to a different rheumatologist, who was much better than the first. He ran the same tests as before but my ANA and such were negative. He didn't write me off though, but prescribed Lyrica and gave me a week's worth of free samples while I waited for insurance to clear it. Insurance said I had to try gabapentin first. Lyrica really improved my sleep, but nothing else. Gabapentin threw me right back into terrible sleep. I went back after a month and he switched me to colchicine. I don't know why, but colchicine really helped a lot. It gave me good sleep, helped my joints, and I haven't been nearly as confused. I'm still tired and if I forget to take my medicine, I sure notice it, but I'm doing alright with just colchicine and atenolol (for my heart).
I don't have a diagnosis, and colchicine isn't normally used for this kind of stuff (it's actually gout medicine), but my life is moving forward again, SLOWLY.
I was medically retired from the Air Force this year due to all this stuff and my wife and I came up with a plan to convert a school bus into our home. We're going to travel the country when the bus is finished and she's out of the military.
For anyone who finds this interesting, you can see our progress here:
http://Www.facebook.com/mscoddiwomple
I hope you all find answers or at least get to where I'm at!
Alex
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4 ReactionsWelcome back, @aman_23_23,
Thank you so much for sharing your progress; I'm sure other Connect members will appreciate it too. And, your future plans of traveling around the country in a retrofitted school bus...WOW!
Here's some information from Mayo Clinic, about colchicine which may interest you: http://www.mayoclinic.org/drugs-supplements/colchicine-oral-route/description/drg-20067653
As you will see, it is prescribed mainly for treating gout, and is also used to treat a rare condition called familial Mediterranean fever (FMF). @aman_23_23 may I ask why your doctor has prescribed atenolol (beta blocker) for you? We're glad to know you're feeling better, and look forward to hearing back from you.
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Like -
Helpful -
Hug
3 ReactionsMy cardiologist prescribed atenolol close to the beginning of all this to lower my heart rate and take stress off my heart.
I didn't know colchicine was also used for Familial Mediterranean Fever, now I want to look into that. My mom's side of the family is from that part of the world.
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3 ReactionsHave you found out anything regarding your condition? My son has been dealing with not feeling well for about a year, and primary said it's all in his head even though he has positive ANA and same symptoms as you had
"Cognitive dysfunction, terrible muscle aches, extreme fatigue, awful sweats, joint pain and locking joints, two bouts with vertigo, insomnia, increased urination, dry skin,(didn't ask him about this one! lol) lack of sex drive "
We have an appt with a rhematologist on May 22nd, but are really frustraed with lack of knowledge. Any info would be appreciated.
Welcome to Connect, @buckywebb. I can only imagine your frustration with the "primary said it's all in his head..." and I'm glad to know that your son will be seeing a rheumatologist soon.
You may also wish to go through some of these discussions, where you will meet Connect members @robbinr @wesbig @cathyh @bobsconnect @jillnc @kyjeanne @gracie927 @tbeckys @atorset @taterjoy and many others who are familiar with the symptoms your son is experiencing:
– Autoimmune Diseases and Fatigue https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– Autoimmune diagnosing problem https://connect.mayoclinic.org/discussion/autoimmune-diagnosing-problem-21474a/
– Undiagnosed auto immune disease https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
@buckywebb, how has all this impacted your son's life? Has he found anything that could be identified as triggers for the onset of symptoms?
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1 ReactionI feel your pain. I have to cancel appointments with friends all the time. I force myself to get out because mentally it’s better for us. I’m a couch potatoe too...almost 18 months.
Hi,@mickie75 -- that is tough to have to cancel appointments with friends. Would you say that is mostly due to pain, fatigue or something else?
I'm a little late to the game here. I also have been experiencing very similar symptoms and my blood work came back for the first time with a positive ANA a little over a year ago. Doctors were stumped, I moved, and have just been managing my symptoms day by day. A few weeks ago I stumbled on an article (I tried to find it to share but couldn't find it - I'll keep searching) on Lyme disease sometimes mimicking autoimmune diseases - causing a positive ANA and displaying symptoms similar to the RA & Sjogren's. After digging a little bit more into Lyme disease I found myself identifying with a lot of the common symptoms. For those of you also on this crazy medical journey, have you been tested for Lyme disease OR have your doctors discussed it with you?
Hello @adrianna23, welcome to Connect. I did some searching for you and am wondering if one of the following articles may be the one you are referring to:
Misdiagnosing Lyme Disease - The Great Imitator
-- http://danielcameronmd.com/misdiagnosing-lyme-disease/
Science Daily - New test differentiates between Lyme disease, similar illness
-- https://www.sciencedaily.com/releases/2017/08/170816141840.htm
Can Lyme Disease Mimic or Cause Rheumatoid Arthritis?
-- https://www.healthline.com/health/lyme-and-ra
John
what was the diagnosis in your case? I've ANA +ve and found nodule in the lungs. My symptoms are muscle pains, ribs pain,sleep problem and dry eyes.
When I breathe, yawning, sneezing it hurts my back. also frequent burping. ANA was negative 10 months ago and now came positive.