Autoimmune something

Posted by devonsnana @devonsnana, Aug 18 9:21pm

I know this will be a long read but please bear with me.
In 2014 I suddenly was stricken with extreme fatigue, my body racked with severe pain and strange swelling in the right arm. After fighting doctors until 2018, I was finally sent to orthopedics. Orthopedics, did the initial evaluation and found my tendons and muscles were crystalizing as well as full disc degeneration from C3 to the coccyx. He ordered an ANA panel which came back with a titer of 1:1250 with a nucleolar pattern. He diagnosed me with systemic sclerosis. I was then sent to rheumatology where he reran the ANA panel using a different method which costed me 3800 because the method he chose was not covered by insurance. It came back with dual 1:1250 nucleolar pattern and 1:80 speckled pattern. He said it was fibromyalgia and outright called me a liar and that I was drug seeking. At this point I had not been prescribed anything. He put me on gabapentin 600 mg nightly and said he would see me in a year. Even though it relieved the pain at night, the swelling and loss of use of my right arm continued. In the meantime, my kidney functions decreased and breathing issues started. I also started having blood pressure issues and through all the testing found I had latent TB. I was sent to nephrology, cardiology, pulmonology and infectious disease. Even though I have told all my physicians of the diagnosis, showed them the labs and many scans I am being treated with skepticism. Pulmonology does annual scans which show interstitial lung disease but says that since I am a smoker it is the smoking and cannot be scleroderma. Cardiology which I just fired says it is just all the drugs they have me on and the harden arteries are from smoking. I have a new rheumatologist who is trying but says it is unspecified systemic connective tissue disorder and probably rheumatoid arthritis because of my age. I also have been diagnosed with Hashimoto Disease, peripheral vascular disease, ground glass in my lungs, severe asthma and COPD. I realize I need to quit smoking but at this point, I am allowed nothing for pain and as much as I hate it the nicotine does ease the pain. My medications are many. I am lost to what my next move should be or what direction I should be going or if I should just throw in the towel. There is no quality of life and I need a new direction.

Sounds like first doctor diagnosed it right. Ssc- can cause interstitial lung disease with ground glass. Also pain, fatigue, kidney function. I would get in touch with a good rheumatologist. Healthy diet and walking or just getting your lungs working is always a good thing. Keep positive -keep moving. Don’t throw the towel in. It’s hard to help yourself when you feel like crap – but you are worth it.

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This is exactly how it started for me. I’ve been told almost everything under the sun. It’s sickening what these doctors do. I will NOT take gabapentin although it really does help you sleep it will cause severe issues to other organs you really don’t need now so try another sleeping alternative. I have swelling in my lower left leg down to my toes. They look like sausages. I have lost all mobility in my wrists and to turn a page in a book I just find some days I cannot move my fingers. I have had these tests ran also. I am in the same boat you are. I was also told in the ER ( I went because my breathing was so bad it felt like my lungs were stuck together and the pain throughout my body was way beyond their stupid pain level of 10 chart) anyway I see a psychiatrist who has prescribed me klonopin and vistaril for my many mental illnesses on top of all this. I can so relate to you. I also have COPD as I am a smoker also but the nicotine or some toxic chemicals in those cigs really do help the pain. I can’t drive anymore, my vision went from 21/20 to 21/-131 in just a few months. I have severe cataracts. I have osteoarthritis in my spine from my c3 vertebrae in my neck to the middle of my spine where a 3 cm mass was found. I also have been to every specialist and nobody will help me. The findings are there! As with you also. I have decided to just go on until I can’t anymore. I cry everyday. Almost all day. Horrible excruciating pain day and night. I cannot write well anymore nor lift much. I am a farmer so this really put a damper on my life. What is odd is that it came on so fast! I was doing Zumba and my right foot bunion area started to hurt. Thought I did too much of a workout so I tried to continue but I couldn’t from the pain. From day 1 of onset of pain and to where my condition is now has worsened drastically in 11 months. I’m told no matter what I do, what meds someone may prescribe I only have maybe 10 more years to live. I’m in agony. I understand your situation. It’s so bad. These doctors are awful! By the way since we are on the Mayo Clinic site don’t they treat rheumatoid arthritis? I’ll check it out because I’ll seek Mayo out as my next facility. Thank you for your story. Finally I know I’m not the only person who feels like they have the flu 24/7, fatigue, swelling, off the chain pain in EVERY JOINT AND BONE.

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@susandenise

This is exactly how it started for me. I’ve been told almost everything under the sun. It’s sickening what these doctors do. I will NOT take gabapentin although it really does help you sleep it will cause severe issues to other organs you really don’t need now so try another sleeping alternative. I have swelling in my lower left leg down to my toes. They look like sausages. I have lost all mobility in my wrists and to turn a page in a book I just find some days I cannot move my fingers. I have had these tests ran also. I am in the same boat you are. I was also told in the ER ( I went because my breathing was so bad it felt like my lungs were stuck together and the pain throughout my body was way beyond their stupid pain level of 10 chart) anyway I see a psychiatrist who has prescribed me klonopin and vistaril for my many mental illnesses on top of all this. I can so relate to you. I also have COPD as I am a smoker also but the nicotine or some toxic chemicals in those cigs really do help the pain. I can’t drive anymore, my vision went from 21/20 to 21/-131 in just a few months. I have severe cataracts. I have osteoarthritis in my spine from my c3 vertebrae in my neck to the middle of my spine where a 3 cm mass was found. I also have been to every specialist and nobody will help me. The findings are there! As with you also. I have decided to just go on until I can’t anymore. I cry everyday. Almost all day. Horrible excruciating pain day and night. I cannot write well anymore nor lift much. I am a farmer so this really put a damper on my life. What is odd is that it came on so fast! I was doing Zumba and my right foot bunion area started to hurt. Thought I did too much of a workout so I tried to continue but I couldn’t from the pain. From day 1 of onset of pain and to where my condition is now has worsened drastically in 11 months. I’m told no matter what I do, what meds someone may prescribe I only have maybe 10 more years to live. I’m in agony. I understand your situation. It’s so bad. These doctors are awful! By the way since we are on the Mayo Clinic site don’t they treat rheumatoid arthritis? I’ll check it out because I’ll seek Mayo out as my next facility. Thank you for your story. Finally I know I’m not the only person who feels like they have the flu 24/7, fatigue, swelling, off the chain pain in EVERY JOINT AND BONE.

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One treatment for rheumatoid arthritis is weekly shots of methotrexate. Which did help but I also have psoriatic arthritis. BUT: The methotrexate will damage your kidneys as is what happened to mine. I stopped the methotrexate but am now consumed with horrible pain throughout the body and the psoriatic arthritis has my finger nails falling off (agony) and the rest of my body responding to pain as well. Damned if you do and damned if you don't. It is easy to give up now but what keeps me going is my cat and dog. They are old as I am (83) they are 14 years of age. They need me to help them with their passing then my turn will come. But, I still smile (when I can). As hard as it is. Good luck to all of us. Peach

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@devonsanna Welcome to Mayo Connect. Here you will find a community of fellow patients, caregivers, and family members who share their personal experiences, like you have. We support each other, but cannot and will not do medical advice or give diagnoses.

It has to be frustrating to have people doubting you, especially when you are in so much pain! Are you near one of the campuses of Mayo Clinic that you could go there, or a large teaching hospital? Having an autoimmune condition or three, it is often a "guessing game", as your body reacts differently at different times. I know that is how it is for me. I wish I had more answers for you, but I hope that others will step in and give their input.

Please come back and let us know how things are going for you.
Ginger

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Hello @devonsnana, I would like to add my welcome to Mayo Clinic Connect along with @fracturedd, @susandenise @peach414144 and other members. Sorry to hear you haven't been able to find a treatment that helps you yet. There are some other discussions you may find helpful.

Nonspecific interstitial thickening with groundglass opacities:
https://connect.mayoclinic.org/discussion/nonspecific-interstitial-thickening-with-groundglass-opacities/
Hashimoto's Thyroiditis and IVIG Treatment?:
https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/
Anyone here who has COPD and TB and was treated at the Mayo Clinic?:
https://connect.mayoclinic.org/discussion/is-there-anyone-on-here-who-has-tb-and-was-treated-at-the-mayo-clinic/

You mentioned a strange swelling in your right arm. Is the swelling in the upper or lower part of the arm? Has your doctor suggested any treatment to help with the swelling?

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@peach414144

One treatment for rheumatoid arthritis is weekly shots of methotrexate. Which did help but I also have psoriatic arthritis. BUT: The methotrexate will damage your kidneys as is what happened to mine. I stopped the methotrexate but am now consumed with horrible pain throughout the body and the psoriatic arthritis has my finger nails falling off (agony) and the rest of my body responding to pain as well. Damned if you do and damned if you don't. It is easy to give up now but what keeps me going is my cat and dog. They are old as I am (83) they are 14 years of age. They need me to help them with their passing then my turn will come. But, I still smile (when I can). As hard as it is. Good luck to all of us. Peach

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I used to take weekly shots of methotrexate for RA. I didn't know it could harm the kidneys; I just knew it could harm the liver. Anyway, my rheumatologist died and I quit the methotrexate since there was no other rheumatologist in the area (Montana). I was sent to a rheumatologist in Duluth where I now live when my sed rate was found to be very high (normal crp, though). He started me on a low dose of methotrexate tablets and then the COVID came along after a month and I quit the meds since I didn't want to face a pandemic with a suppressed immune system. I don't want to try biologics since they can make one susceptible to lymphoma. What I would like to try is medical cannabis since it apparently has anti-inflammatory effects. After I get a COVID vaccine I may ask for medical cannabis. He could throw me out on my ear, although so far he has been a nice man. Inflammation is dangerous, too. If I could just get my sed rate down I would be happy–the RA is just something I live with and tolerate pretty well. I also have Hashimoto's for what it's worth.

Liked by devonsnana

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@ellens

I used to take weekly shots of methotrexate for RA. I didn't know it could harm the kidneys; I just knew it could harm the liver. Anyway, my rheumatologist died and I quit the methotrexate since there was no other rheumatologist in the area (Montana). I was sent to a rheumatologist in Duluth where I now live when my sed rate was found to be very high (normal crp, though). He started me on a low dose of methotrexate tablets and then the COVID came along after a month and I quit the meds since I didn't want to face a pandemic with a suppressed immune system. I don't want to try biologics since they can make one susceptible to lymphoma. What I would like to try is medical cannabis since it apparently has anti-inflammatory effects. After I get a COVID vaccine I may ask for medical cannabis. He could throw me out on my ear, although so far he has been a nice man. Inflammation is dangerous, too. If I could just get my sed rate down I would be happy–the RA is just something I live with and tolerate pretty well. I also have Hashimoto's for what it's worth.

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Cannabis will do nothing to slow or stop the disease.

Liked by devonsnana

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@susandenise

This is exactly how it started for me. I’ve been told almost everything under the sun. It’s sickening what these doctors do. I will NOT take gabapentin although it really does help you sleep it will cause severe issues to other organs you really don’t need now so try another sleeping alternative. I have swelling in my lower left leg down to my toes. They look like sausages. I have lost all mobility in my wrists and to turn a page in a book I just find some days I cannot move my fingers. I have had these tests ran also. I am in the same boat you are. I was also told in the ER ( I went because my breathing was so bad it felt like my lungs were stuck together and the pain throughout my body was way beyond their stupid pain level of 10 chart) anyway I see a psychiatrist who has prescribed me klonopin and vistaril for my many mental illnesses on top of all this. I can so relate to you. I also have COPD as I am a smoker also but the nicotine or some toxic chemicals in those cigs really do help the pain. I can’t drive anymore, my vision went from 21/20 to 21/-131 in just a few months. I have severe cataracts. I have osteoarthritis in my spine from my c3 vertebrae in my neck to the middle of my spine where a 3 cm mass was found. I also have been to every specialist and nobody will help me. The findings are there! As with you also. I have decided to just go on until I can’t anymore. I cry everyday. Almost all day. Horrible excruciating pain day and night. I cannot write well anymore nor lift much. I am a farmer so this really put a damper on my life. What is odd is that it came on so fast! I was doing Zumba and my right foot bunion area started to hurt. Thought I did too much of a workout so I tried to continue but I couldn’t from the pain. From day 1 of onset of pain and to where my condition is now has worsened drastically in 11 months. I’m told no matter what I do, what meds someone may prescribe I only have maybe 10 more years to live. I’m in agony. I understand your situation. It’s so bad. These doctors are awful! By the way since we are on the Mayo Clinic site don’t they treat rheumatoid arthritis? I’ll check it out because I’ll seek Mayo out as my next facility. Thank you for your story. Finally I know I’m not the only person who feels like they have the flu 24/7, fatigue, swelling, off the chain pain in EVERY JOINT AND BONE.

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Please do try to get to Mayo! I think you would be assigned a team of Drs to work with you. Do you have health insurance? I think Mayo is not pricier than other places and it is the best.

Liked by devonsnana

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@fighter

Cannabis will do nothing to slow or stop the disease.

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Have you tried cannabis? What I am looking for is something to tamp down the inflammation.

Liked by devonsnana

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@ellens

I used to take weekly shots of methotrexate for RA. I didn't know it could harm the kidneys; I just knew it could harm the liver. Anyway, my rheumatologist died and I quit the methotrexate since there was no other rheumatologist in the area (Montana). I was sent to a rheumatologist in Duluth where I now live when my sed rate was found to be very high (normal crp, though). He started me on a low dose of methotrexate tablets and then the COVID came along after a month and I quit the meds since I didn't want to face a pandemic with a suppressed immune system. I don't want to try biologics since they can make one susceptible to lymphoma. What I would like to try is medical cannabis since it apparently has anti-inflammatory effects. After I get a COVID vaccine I may ask for medical cannabis. He could throw me out on my ear, although so far he has been a nice man. Inflammation is dangerous, too. If I could just get my sed rate down I would be happy–the RA is just something I live with and tolerate pretty well. I also have Hashimoto's for what it's worth.

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Ask your rheumatologist if colchicine would help. I had a terrible flare up once and I was treated with colchicine, for inflammation/etc —it was a last resort and worked!! You could always try taking tumeric- for a natural anti inflammatory.

Liked by devonsnana

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@peach414144

One treatment for rheumatoid arthritis is weekly shots of methotrexate. Which did help but I also have psoriatic arthritis. BUT: The methotrexate will damage your kidneys as is what happened to mine. I stopped the methotrexate but am now consumed with horrible pain throughout the body and the psoriatic arthritis has my finger nails falling off (agony) and the rest of my body responding to pain as well. Damned if you do and damned if you don't. It is easy to give up now but what keeps me going is my cat and dog. They are old as I am (83) they are 14 years of age. They need me to help them with their passing then my turn will come. But, I still smile (when I can). As hard as it is. Good luck to all of us. Peach

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Methotrexate gave me COPD after only a short usage time. It did nothing for my RA. Anyone thinking of using it should think twice as I have read of many negative experiences with this drug on this site. But then, it seems to be fine for others, so just be careful. The new biologic drugs seem to help many, but they are expensive and anyone who has had cancer should not take them.

Liked by devonsnana

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Thanks for the input. I took methotrexate in the early 2000s and it helped. I went off of everything but my rheumatologist said I should get right back t him if I started having pain again. I did and I was giving myself shots once a week but it didn't seem to help and then my rheumatologist died and I couldn't get another one anywhere near me in Montana. I've been off of it until one month before COVID kicked in and I went off of it on my own until there's a vaccine for COVID.

Liked by devonsnana

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@fracturedd

Ask your rheumatologist if colchicine would help. I had a terrible flare up once and I was treated with colchicine, for inflammation/etc —it was a last resort and worked!! You could always try taking tumeric- for a natural anti inflammatory.

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Thanks for the suggestion! I'll look up colchicine ASAP. I do take curcumin/turmeric three times a day.

Liked by devonsnana

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PS–A few years ago I did a bunch of research on marijuana and some pretty scientific people believed it to be an anti-inflammatory substance. I was on legal MJ in another state but I didn't stick with it because I don't like to smoke and didn't know how else to take it. I don't like getting stoned so there is a delicate balance there. I have figured out a way to take some by mouth and if I can stick with it I may get results–can't know if I don't try!

Liked by devonsnana

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@ellens

PS–A few years ago I did a bunch of research on marijuana and some pretty scientific people believed it to be an anti-inflammatory substance. I was on legal MJ in another state but I didn't stick with it because I don't like to smoke and didn't know how else to take it. I don't like getting stoned so there is a delicate balance there. I have figured out a way to take some by mouth and if I can stick with it I may get results–can't know if I don't try!

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Dr John Varga from northwestern in Chicago just did a great article on the benefits of medical marijuana for scleroderma patients. I’m sure you could google it.

Liked by devonsnana

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