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Questions about possible RA

So I'm not sure where I should begin. Back in 2013 I began having some unusal symptoms. I began experiencing numbness in my right arm if I looked down for more than 5 seconds. I also had a CT of my head after I sustained a fall which came back pretty normal other than "Chronic Periventicular White Matter Disease" I was having the numbness in my right arm and I was also having some minor aches and pains that I shrugged off for some time. My Primary Dr sent me to a Neuro who ran a whole battery of tests. He believed what I was suffering from was the onset of MS. I was placed on some medications to see if my symptoms would improve. One of the blood tests he ran was an inflammatory blood test which came back with very high results. Before anymore tests could be ran I ended up moving back to my home state. I had 6 refills on meds he prescribed so I was good to go for a while after moving back to my home state. Fast forward to 2015. I was seeing a new GP and she believed that the diagnosis of MS was incorrect. At the time no other diagnosis was made as my symptoms weren't there anymore. In September of 2015 after a few months of feeling particularly under the weather a day came where I knew if I wasn't taken to the hospital ASAP that something awful was going to happen. During that hospital stay it was discovered that I had Autoimmune Induced Addison's Disease. My life changed greatly after that. I was put on 30mg of hydrocortisone daily to manage the Addison's since my adrenal glands quit working completely. It's been rough going ever since. I have been hospitalized 22 times in 36 months. My Endo and all the Drs that I have seen say I have one of the most difficult cases of Addison's Disease that they have ever seen. My body can deplete over 300mg of steroids a day while I'm in the hospital. They say they've never seen anything like it. Fast forward to 2018. I was pregnant with my now 4 month old son when I fell ill and it was discovered that I had a systemic infection. I had Sepsis and was told that I had to be on 2 months of IV antibiotics and stay in the hospital. During that hospital stay I began noticing that I was beginning to ache all over. It was the worst in the mornings when I would try to get out of the bed to go to the bathroom. As soon as my feet hit the floor the pain would almost make me fall over. It took me the longest time to walk to the bathroom because my feet hurt, my legs were stiff and I was extremely breathless. At 7 months I was informed that I was suffering from Pre-eclampsia. I had never had it with any of my other children so this was all new to me. After delivering my son nearly 2 months early my pre-eclampsia got A LOT worse. The day after I delivered my son my entire body swelled up. My legs were so swollen that I couldn't even bend them. The pain that I had from the infection still hadn't left me. I figured that I was just suffering from post sepsis syndrom as well as dealing with pregnancy weight and swelling. Labs were ran on me and it showed that my SED rate was 80 and my CRP was at 10. They said they weren't sure why it was so high but they assumed that it had to do with my Addison's. It was also discovered that my hemoglobin was at a dangerously low 6.3 so I got a blood transfusion. 2 days after I was discharged from giving birth I was rushed to the hospital because my blood pressure was 220/134 and I had the worst headache of my life. They thought I was having a stroke. Thank God it showed that wasn't the case but it was discovered that the original infection that I had in March had not been taken care of and was wreaking havoc on my body. The 2nd day I was there when the Resp Therapist came in to do my Nebulizer treatment and it was discovered that my O2 was only 84%. It remained that way even of the day of my discharge 6 weeks later. Nobody could figure out why my lungs just weren't working properly anymore. I should also mention that I have heart issues as well going back a few years. I have rhythm disorders. I have A-Fib, V-Tach and tricuspid innsuff. So here we are and its the middle of September and I've been on oxygen since May 13th. The pain that I had has also not gone away. I thought I was still suffering from post sepsis syndrome or simply from being so immobile from all thats happened since March of this year. Every single morning when I awake and get out of bed to use the restroom the pain in my feet and lower body is horrible. I've just been telling myself that it will get better and my body just needs time to heal from everything I've gone through. I noticed as well ever since I came home mid-June that I can no longer sleep on my stomach. If I do I wake up in excruciating pain in my lower back and right hip like my back is about to break. I've also just put this off as my body getting over the pregnancy. Well last week something new began happening. I noticed that my ring finger began THROBBING in the middle by the knucle. I spent 2 days trying to figure out why in the world it felt like my finger had been slammed in a car door. In those 2 days it just hurt REALLY BADLY. On the 3rd day I noticed that my middle finger right next to it began doing the same thing. It would throb off and on all day. Nothing made it feel any better. I've had arthritis in my knees since I was 14 and the pain in my knees and the pain in my fingers were similar but the pain in my fingers was much worse. It was the same in the sense that it was a DEEP ache. My fingers had a deep ache but it was much more than just sore. Alls I could do was cry. Then on the 4th day the swelling began. First it was just the knuckles in both those fingers. Then it spread to the knuckles at the base of the fingers and the swelling went into half of my hand. The next day the same thing began happening to my right hand. By that night it was both my hands, a few fingers on each hand, both my ankles swelled, my shoulders were hurting and my breathing was getting a lot worse. I had to go up from 2 liters to 5 liters just to get my O2 to stay above 90. I stressed dosed with my steroids that I have to take daily for my Addison's and this seemed to help some but I'm still suffering from all these problems. I plan on contacting my Dr this week to schedule an appointment but after doing some research and reading I do believe I have figured out whats wrong. I do believe that I have RA. What has me more convinced than anything is the lung problems that can appear before the joint problems even do. I believe that when the Drs thought I had MS back in 2013 it was actually the beginning of RA and because I was placed onto steroids that they masked it for so long. I never had my joints swell like they have been the last week but as I stated I've been on steroids for many years because of the Addison's. I have never dealt with pain like this before. The way I feel when I wake up in the morning is bad but in this last week since everything began with my hands the pain in my feet has become much worse. I've been on pain meds because of my spine issues for 3 years and my meds don't even put a dent in the pain I've been experiencing this week. The swelling has gone done a little but not much. When I take about 60mg of my steroids it helps with the pain and swelling some but not much. It got so bad Friday night with everything being so swollen and the pain was nearly unbareable so I took a massive amount of my steroids and today the swelling has gone down about 75%. The pain is just as bad though. My question to you all is does this sound like this could be RA? Over the last 5 years all my labs have shown severe inflammation, SED rate being up to 120 at many times. I think because I've been on steroids for so long they've been keeping this at bay. Nothing else really seems to make sense. I convinced myself that all my symptoms were because of the infection that I had for months but it didn't really make sense. Now that everything has become much worse over the last week and all the swelling has been more than apparent I know it's more than just the previous infection. My hands, fingers, wrists, ankles, feet, knees and lungs didn't get messed up because of the infection. Once the swelling and pain began mirroring the opposite side of the body I figured it was RA. I guess I would just like your experience and input on the matter. I understand that you're not medical Drs, rather just giving me your input. Any input would be great. Thanks in advance. I have left a lot of things off just so I could try to post this as quickly as possible. Any questions you have please don't hesitate to ask.

  1. Did they run a full Rheumatology panel on you? Was any of it positive? Was your ANA positive? Was there a pattern?

    I didn't see any of this, but it makes me think they ran it and it was negative except the ANA. This is what led them to MS. They initially thought I had MS too. Then Addison's, but my cortisol rebounds by itself by the afternoon. You are correct that RA can go to your lungs. Mine did. I was initially positive for lupus for about a year and a half. Now I'm not. There is something called sero-negative RA where you have RA, but your bloodwork doesn't show it. I started off with that. Eventually I turned positive. You can have any autoimmune disease and be sero-negative, at least that is my understanding. I'm no doctor, but I have not heard of anybody else saying adrenal problems go with RA. It doesn't mean they don't go with other autoimmune diseases or that you could have more than one thing going on. I do.

    Have you been to a university hospital to see specialist? I had to go several places to get a diagnosis and treatment. Turns out I also have something called Dysautonomia that affects my adrenals and other things like BP, heart rate, gastroparesis, thyroid and I faint. If you don't get some quick answers, I would encourage you to go to a major University Hospital. I drive 6 1/2 hours twice a year to see Specialists.

    I hope you get answers soon.

    1. No they didn't run a RA panel. The reason they believed it to be MS initially was because of what a CT showed on my brain. "Chronic Periventicular White Matter Disease" which is widely known for MS. I had a neuro preform an EMG study which showed some nerve issues but before they were able to do all the testing they wanted to my husband decided to move us back to florida. The only blood tests the originally did were basic CBC,CMP and inflammation markers. My SED rate was 80, CRP was 10 and my Western something was elevated. Also my IGe was at 302.
      I unfortunately was diagnosed with Addisons during a crisis which nearly killed me. I am being followed by the Endocrinology team at Shands in Gainesville which is a HUGE University hospital. Unfortunately every time I go and see them there something more pressing thats going on at the time that they focus on. I get A LOT of GI infections which have caused me to go into an adrenal crisis almost every time. The Endos cannot figure out what is causing my body to deplete the steroids so quickly. As I stated I've been hospitalized 22 times in 36 months. For weeks/months at a time where my body goes through over 300mg of hydrocortisone in a 24 hour period. I was diagnosed with Gastroparesis in 2013 and have had several instances where my stomach will COMPLETELY shut down for WEEKS at a time backed by a gastric emptying study that shows 100% retention during these times. When I first started having the stiffness and soreness issues I chalked it up to being in a hospital bed from basically March-June 18th. I figured my heart was acting up again because I just dealt with an infection for months. My lungs though the Drs are still confused about. I have pulmonary nodules but they didn't think they would cause the near overnight issues I have. My O2 cant go above 84% on room air which literally happened almost overnight. Ive had back issues for quite a while, Facet Hypertrophy with chronic bony overgrowth in many of my facets which I attributed my back pain but the Drs said that it shouldn't have started bothering me so servely all at once. Last week when the finger pain started I couldn't figure out why and as stated the next day it was 2 fingers and within a few days it had spread to the other hand, then my wrists, then my elbows, then my feet/toes where the toes begin, then ankles, knees, shoulders. Not all the joints were red and inflammed, some where just inflammed. My fingers, toes, ankles and one elbow were both red and inflammed. My right foot has been doing this thing the past few days where I get a burning hot sensation for about 15 seconds, non painful just noticeable. My joints are all still pretty sore but the throbbing is only still going on in my fingers, wrists, my right hip and my left knee. My father had RA before he died and my aunt on my mothers side has it currently. I'm scheduled to see my Dr next Wednesday and I will be bringing all of this up to him but I thought I would ask all of you your input. I definitely DON'T want to add yet another medical issue to my plate so I'm hoping my Addisons is causing some systemic inflammation for some reason other than RA. Like I stated I've had Arthritis in my knee since I was a teenager along with an extra boney material in that knee from the age of 14. I just want to know whats going on because this new throbbing pain is unbelievable. My pain medication doesn't come close to touching it. My hands are still pretty swollen and it's painful to try to apply pressure to the knuckles/joints.

  2. I'm in Orlando. Where are you, if you don't mind saying? Shands is ok, but you may be better off at Mayo in Jax, if they take your insurance.

    Have you ever heard of an autoimmune disease called sarcoidosis, which can lead to neurosarcoidosis? Have they ruled this out? Not saying you don't have RA, but like you said, so much other stuff is happening. I went to Mayo in Jax, then on to Vanderbilt and Medical University of South Carolina. Mayo stopped taking my insurance.

    I can see why they thought MS at first. I hope they run a full Rheumatology panel on you soon. Elevated IGE doesn't really fit, but who knows. Guillain-barre syndrome can fit with elevated IGE, but not sure about Periventricular White Matter disease. The problem is that many of us aren't text book cases.

    Were they able to put you on a compounded med for the gastroparesis? Have they discussed the pacemaker device or are you not a good candidate? I'm on the med and it is working for me, but I have constant functionality of 35%. I know that I am lucky.

    I hope you get some answers. Let me know if you need anything.


    1. I'm not too far from you. I'm next door to you over in Brevard County. As far as the gastric pacemaker I was sent to Shands in July of 2017 after my stomach had been shut down for 6 weeks and the local hospital I was at didn't know what else to do for me. Upon my arrival at Shands after they performed a once over on me and noticed my left arm was very sore and swollen that in fact several veins were clotted off and the blood was backing up in my arm. Apparently I was in A-Fib and throwing clots and they lodged themselves in my arm. So now instead of them focusing on the gastric issue they were forced to address the more severe issue at hand. I was placed in ICU and wasn't stable enough to be operated on at the time. I went into an adrenal crisis and they couldn't operate until I was somewhat stable. After 2 1/2 weeks the vascular surgeons came in one night to check on me and said surgery couldn't be postponed any longer or I would lose my arm or my life. I guess the clots were backing all the way to where they were posing a threat to travel to my brain. They said it was going to be a simple 45 minute surgery and when I awoke I noticed it was nearly 6 hours later. They ended up having to remove half the veins in my left arm and my ulnar nerve sustained irreversible damage. I went into septic shock as well because the clots began to get infected. I was hospitalized from May- August in total for that. I was told that I would need to come back to get the pacer done. 2 months after my discharge I fell pregnant with my youngest son so surgery was out of the question. Surgery is ALWAYS a huge risk for someone with Addisons as our bodies don't respond to it well and it could be letal. Everything has to be perfect before they even consider surgery unless its a medical emergency like my arm. My stomach has shut down several times, sometimes its only for a few weeks, the longest has been a few months. I went from 250 pounds to 140 pounds in just over 3 months. I was losing around 1 pound a day. My organs sustained damage as well. They cannot figure out why it does it, other than the gastroparesis, but they cannot figure out why I have the gastroparesis. I don't have diabetes or any other illness that causes it. Every time we think we can plan for something my health decides that something else is more important. Me and the Drs kind of poke fun over the fact that we should never plan something because thats when my health takes a turn and makes plans of its own. As far as Mayo clinic they don't take my insurance but I know that all the genetic testing thats been ran on me gets processed at the Mayo Clinic. I would love to be able to go there but for now Shands is the only Specialty hospital I can go to. I had to deliever at Winnie Palmer though because my son was so early. I have never heard of the illness that you have mentioned and I don't know what all my Drs have tested for without my knowledge as I know MANY tests have been ran before they were able to diagnose many of my issues. I hate when something new begins to happen becsuse I don't want to tell my Dr because I don't want to be a bother. Every time I turn around its something else and I know if I'm tired of it he must be too. I wouldn't know what I would do if I woke up one day and everything was just fine with me. Because of all my hospital stays over the last 3 years I've gotten to the point where I don't want to go back, ever. I can't handle it anymore. I don't want to accept my health will never get better and I'm tired of Drs telling my husband I'm dying. I'm just so damn frustrated.

  3. I grew up in Brevard county, Titusville. Small world.

    I have a decent gastro in Orlando near the science center if you want to give him a shot. There are no Rheumatologists I would recommend in Orlando. My endocrinologist isn't interested in my adrenal issues, so they are being dealt with by my dysautonomia doctor in Charleston. You are right, Shands probably is your best bet.

    I know what you mean about surgery. I need surgery on my ankle, but can't find anyone to do it because of my adrenal issues. My insurance won't cover anything but out patient surgery, but I have trouble maintaining BP and staying conscious for a few days afterward even with prednisone. Now with my Interstitial lung disease, nobody will touch me. I also need brainstem decompression surgery, but I have a neurosurgeon in Charleston who is willing to do it. I'm not convinced it will solve much and I'm not sure I want to go through the recovery if there is no substantial gain.

    All I can tell you is that of everything possible, RA would be the least of your problems. Most of the treatment for the autoimmune diseases are very similar, so they may start you on one. I'm on methotrexate and Xeljanz. I will be stopping Xeljanz soon and starting IV Actemra because I developed lymphadenopathy.

    All of this with a new baby... I don't know how you are doing it.


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