Autoimmune Disease? ANA 1:1280, positive Anti-SSA
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I just met with my Rheumy and he offered no diagnosis and no path forward and I am both shocked and frustrated.
For the past 3 years I have been dealing with joint pains (fingers, hands, wrists, hips, knees, ankles, and elbows). Every morning I wake up feeling like I was hit by a bus. After about an hour or so, I am able to move around and my joints feel bruised. It is symmetrical. For example, both left and right pointer fingers hurt worse than all other fingers throughout the day. I have clear cognitive dysfunction. I forget what I am talking about mid sentence. I will forget what others tell me. I sometimes find myself in a stall mode where I am just staring at my computer screen at work. Its like my brain is refusing to work for me. I use and sometimes type the wrong words. So instead of saying “I drove the car” I would say/type “I used the bike”. These mix ups are so confusing, people around me think I am losing my ever loving mind. Concentration is becoming a huge issue as well. My overall body is achy and feels like a dull pain is covering my entire body. Fatigue is a huge issue as well. I describe it as a powering down of my systems. One minute I will be fine and then I will go through 5 days or so of intense fatigue. I also have sharp stabbing pains going through my left arm and hand throughout the day. It’s so painful that it keeps me up at night and will affect my concentration. My hands go numb when holding my phone or talking on the phone and at night when I sleep. About two years ago I started getting these debilitating back pains. I kept ignoring them until I finally went to the ER and found that I needed an emergency gallbladder removal. I thought everything would be better after that, but the back pains still persist. These pains have the intensity of a contraction. It sounds similar to pancreatitis pains, my my blood tests don’t show any issues with my liver or pancreas. I also have a red rash that showed a little over a year ago. I have just gotten pregnant and assumed it was related to hormones/acne . It is still here and looks similar to a Malar Rash. When the color is more defined I know I am about to get extreme fatigued followed by the back pain and intensification of the above mentioned symptoms. I also get mouth ulcers about 2-3 times a month.
As for blood work, I have a positive ANA with a titer of 1:1280. I have speckled pattern. I have a positive Anti-SSA (149 strong positive). I have a positive RH Factor (54). I also have an equivocal saccharomyces cerevisiar AB (IGA) at 21.2.
During the appointment I had Friday, my Rheumy looked at my hands and said the fingers didn’t bend correctly. He asked if I could open jars and I let him know opening jars, taking my charger out of my phone in the morning is impossible and opening water bottles is impossible in the mornings as well. He proceeded to tell me he thinks I have osteoarthritis even though I am 40 and young for that diagnosis. He asked if my mother had issues opening jars and when I confirmed she did, he said it’s genetics and not Rheumatoid Arthritis. I later saw a table with the differences between the two and found that my symptoms more fit with RA. It is symmetrical pain, it came on suddenly, I have a high ANA and a positive RH factor, etc. He then pushed a couple muscles and when I flinched he said my muscle pain is from not getting enough sleep and possible fibromyalgia, but that he couldn’t help me with that. He then went over all my blood work and said the only thing he sees is that I might be at risk for Sjogren’s. I did ask about SLE, he said if I had SLE then I would have 4 out of the criteria list he gave me. He said the Malar Rash has to be diagnosed by a dermatologist. I don’t have arthritis (which I thought he just said I did and I clearly have all symptoms pointing to it). He agreed with mouth ulcers and positive high titer ANA so I only had two.
He ended the appointment saying there was nothing he could do for me. I don’t have dry mouth or dry eyes so he can’t make a Sjogren’s diagnosis. He told me to go get a second opinion. I have been shocked since Friday. I clearly have something going on so I am baffled why he is done searching for answers. My first appointment I was five minutes late and he seemed annoyed by me. I overheard him dictating my patient record and he said that he didn’t think I had any issues and that the blood work would most likely reveal nothing. I called him after that appointment and asked him why he felt that my blood work we just sent in wouldn’t show anything. He explained to me that he has been doing this for years and he just knew. He was apparently wrong.
Am I going crazy here, or is this doctor blowing me off? I feel like all my symptoms point to some sort of autoimmune issue. It took 3 months to get into this doctor and get all the blood work results back. I feel like I wasted 3 months and still have no answers. Any advice on where I should go next?
0 likes, 8 replies
Nu2this jennifer41849
Posted
Hi Jennifer,
It seems like he is blowing you off. I would definitely seek a second opinion but before doing so research the Rheumotologist. I don't know where you are from but my Rheumy wanted me to get a second opinion just as a confirmation to his diagnosis which he himself ruled out eventually. He had sent me to John Hopkins and a few in NY. I was told Colombia had a great Rheumotology Dept. I also had done online research to what i thought i had and a few foundations popped up. They were able to give me a list of Rheumotologist in my area specializing in my disorder. I was diagnosed 3 mths ago with RA and your symptoms sound alot like mine. Both pointers feel like they have lost some function. They are very weak. Mu knuckles are beginning to feel alittle better but most of my pain is in the morning and gradually fades through the day...never completely though. Even switching side in bed or throwing the comforter over me can hurt sometimes and yes it feels as uf i got hit by a bus. Although it may be RA, scleroderma mimics the same symptoms as alot of autoimmune diseases. I think my doctor is not fully convinced as to what i have but is observing me month to month through xrays and bloodwork. You can also see a dermatologist. They are great at diagnosing skin disorders which can be helpful with your diagnosis. My son had a lesion biopsied which they thought was Lupus so dermatologist can be of much use. Do your research, log your symptoms, ask questions and be persistent especially since you are pregnant. Honestly, it doesn't seem like your hormones are on overload but i am not a doctor. I had 28 tubes of blood drawn for multiple autoimmune in one shot and about 17 prior to that so my Rheumy is crossing every ts. Best of luck with your pregnancy. Hopefully you won't have any of these horrid diseases but if you do, hope you get diagnosed quickly. My prayers for you and God bless.
pmorgan7 jennifer41849
Posted
Jennifer, Just a quick suggestion; have you been tested for sleep apnea? If not insist on a test. It's overnight. The tech will wire you up, nothing painful, just a bit clunky. Then you'll sleep in their bed (the testing center). Very often the results are so obvious that half way through, they will bring you a CPAP machine to try for the rest of the night. That may not/probably isn't the cause of the pain, but could explain the fiddle headed brain functions. (It took us a bunch of specialists - who were supposed to be looking for/at other things - and telling each one the litany of symptoms Drs included GP, Cardio, Endo, Ortho, and others. Finally a neurologist connected the dots and said what I wrote at beginning. It's a different world now.) Good luck and keep pushing for a Dr who can help &/or will listen.
Alley77 jennifer41849
Posted
I share your frustration I have left many doctors in tears I am wondering if your going to the right type of doctor The cognitive symptoms might be a big clue that that is being over looked I have suffered in pain for many reasons but the pain has gotten worse and m hands don't work at all My daughter who is a MD who also happens to have Lupas has said for years because of memory problems and some other random symptoms believes I have Parkinsons My Psych Dr agrees He also has a degree in Neurology I did not know it can cause physical pain Just a thought For several years and multiple ER visits where I was treated with no respect I feel like perhaps I might have an answer Trembling can be subtle and sometimes goes unnoticed Please find another Doctor My daughter told me sometimes Drs are lazy as well as an ego that won't allow themselves to be honest with patients and say *I don't know Let's see what direction we should go* Instead you get Oh well your blood is fine Your fine which ends up causing more stress to the patient She finds it disgusting My advice is to speak with GP about a Neurologist Keep me updated Good luck
judy1947 jennifer41849
Posted
margaret22116 jennifer41849
Posted
Your symptoms and blood work are really pointing to Lupus. I would see a different doctor and forget about this one who doesn't seem to understand the area well enough. There are a lot if bad practiotioners out there. Good luck.
Chiku29 jennifer41849
Posted
Hi Jennifer, I am now approaching 42 and since my last pregnancy which was when I was 28 my health started taking a downward spiral periodically.
I was diagnosed with osteoarthritis when I was 33 and after a few years on the medication my health was deteriorating more so which was when my GP sent me private as he couldn't get me tested sooner via NHS.That was when I had been told I had Sjogrens Syndrome aswell as osteoarthritis. Around a year later I was told besides me having those conditions I also had Rheumatoid Disease.
Each day is a battle and at times I just wish I never had any of it as there have been times when who knows which condition gave me terrible tremors my youngest would spoon feed me plus give a running comical commentary whilst feeding me.
What I hate, (yes I know hate is harsh term which I mean) is that I was the type that loved walking many miles from one side of greater London to the other as well as carry out what I now refer to as Wonder Woman super hero chores.
I also have a shadow on my frontal right lobe of brain which deals with short and longterm memory which is now a complete mishmash, which is worrying plus forgetting how I had fallen and also forgetting how to open up phone to retrieve shopping list whilst in shop despite having a shopping list on paper too.
My sleep is also affected as there are times I am unable to get up out of bed to not getting any sleep whatsoever.
Last week I had been sent for blood tests for thyroid which I hope to find out results next week from my GP.
Depression is another issue which I am under the local mental health team for which I can say for sure is mainly due to current and previous government (UK) changes after L party were outvoted.
I wish I was able to work as my mind wants to work but my body is in constant battle against it and refusing to do what it once had as I loved working and had a number of jobs at same time.
In recent years I have reinstated my old pastimes such as arts and crafts plus writing poetry. Its not much but its where I am able to express myself without having to explain myself constantly on how I am in a number of ways.
Tumtum1963 jennifer41849
Posted
Well I would say Sjögren’s would be a good fit from my experience and is just as serious as Lupus or RA if less we’ll understood by the medical profession. I didn’t have a particularly dry mouth or eyes when I was diagnosed with RA seven years ago. But, despite all other antibodies being negative my hands showed very apparent synovitis and I had high ESR and CRP.
Then I relocated 3 years ago and saw a chap like the one you describe who was very focussed on signs and symptoms matching. My only symptom by this stage was neuropathy and dizziness and my only signs were high inflammation because I’d been on RA meds for five years. So he undiagnosed me with everything including secondary Sjögren’s. My eyes and mouth weren’t dry enough.
I moved again and by this time my synovitis has returned and my ANA was clear positive and I had elevated Creatinine, IgG and IgA. Due to the small fibre neuropathy everywhere and my bloods the next rheumatologist suggested I have a lip biopsy - which the dental school did although they were sure, from lack of inflammation in my parotids, that it would be negative. In fact it was 100% positive!
It can take years to get a diagnosis but if you are anti Ro (SSA) positive and have bulateral joint pain and early osteoarthritis then Sjögren’s could still be your autoimmune disease whatever this man says.
If you are in UK then you could contact BSSA for local Sjögren’s rheumatologists or if you are in US then you should contact the SSF.
jayamuruga83081 jennifer41849
Posted
got your points and am the one pretty much 100% same issues as like you and suffered for 15yrs,
Now its all ends up we people have our solutions and you can't get a solution from any doctors around the world,
After 15yrs back Am not just recovered I just ran successfully in 8km mini marathon in Bahrain , .
So for got everything, you don't need any kind of doctors or medications,
I can promise here by if you believe me I will make you runaway not only from your apartment, you will see as like me ,,,,, pls follow me and get well as like me , without spending single
Dollar you will be rocking,,,,
I don't know how to educate and bring awareness around the people in world who suffers as like.
Count your days you will be on your mark on human race to excel,,,