Hello everyone, it’s Mefly495. Thank you for accepting me into the group. I have been dealing with this for the last 5+ years. I have been to four different Rheumo docs and have been diagnosnosed in their opinion as, connective tissue dissease, mixed connectives tissue disease, psoriatic arthritis, and now thinking it may be SS. I have had every blood test, or so it feels at least. All blood tests come back negative. However, from the top of my head to my toes I have had a host of problems. I have been diagnosed with Seborrheic dermatitis, dry eye. I have a dry mouth and use a prescription toothpaste but no real dental problems with my teeth. Muscle pains that come and go and certainly affect different parts of the body. Problems with nerves that seem to affect primarily my left side. My lower back causing pain running down my left leg and my neck causing pins and needs down my arm. My big toe at times seems to be affected by numbness and my thumb and first finger now have a almost constant feeling of Being numb. Currently in physical therapy and doing excerises at home hoping to get relief. My lower back problems been on and off for years and the neck just started about a month ago. I have had all kinds of GI problems and will be seeing the GI doc yet again next month. It is sad as I have about 12 doctors and only 54 years old which some days feel much older than that. At times I am feel so so tired but still carry on with doing my job and everyday things. My Internest can’t seem to pinpoint what is going on but is thoroughly convinced it is an autoimmune disease and the Rheumo docs don’t know what exactly it is too since the tests come back negative.
I feel like I live a life of Doctor, chiropractic appointments, PT. I just wish I could feel better. The Rheumo doc wants to put my on humira which I just am not a fan of. She has placed me on methotextrate and hydroxychloroquine before but I didn’t do well with the methotextrate and the other one didn’t seem to help me either. Has anyone been placed on Humira? Has it helped. I really want to feel better and haven’t even listed all the different issues as trying to just put down the basic things that are happening. Sorry for the long post but hoping some of you can relate to the frustration I feel. Thanks
Hi Mefly,
I'm new here too, recently diagnosed with Sjogrens (SSB positive) with ANA and other tests negative. My first appointment with the rheumy was a couple of weeks ago, and more blood test were ordered, with pretty much the same results, with the addition of slightly elevated Creatine Kinase levels, and vitamin D up to 37 from 25 in March (I've been supplementing since). Wickedly dry, bloodshot eyes going back 8 years, with GI problems and reflux. So far, I'm managing with multiple vitamin and herbal supplements, with my next rheumy appointment scheduled next week. The increased fatigue, brain fog, dry skin, dental issues and throat hoarseness is what drove me to request the test from my primary in May. I'm sticking my neck out on the line and had my first appointment for acupuncture last Saturday. At this point, I'm willing to try just about anything. I have a long history with chiropractors, so acupuncture seemed to be the logical next step.
I feel your frustration, but at least I have something to work with now and will continue to seek out alternative treatments until I throw in the white towel or my medical team comes up with a plan. I just turned 54, so we share a similar journey so far.
Bailey,
Wow we do share similarities. I think many of my problems started many many years ago. In 1998 it was discovered I had stage IV endometriosis. The surgeon who did my surgery said it was the worse he had ever seen. Thankfully I didn’t need a bowel resection with it. it was a couple years after that surgery that things seemed to Ho right downhill for me again. Tests when my eye issues started, thyroid, GI, muscle aches and pains, dry mouth, sinus issues, very dry skin, low vit D levels,etc. such a frustrating thing. Recently experiencing confusion, and extreme fatigue and now nerve problem with my left arm. A friend of mine swears Sjogren’s is what I have, my primary thinks so too. But my blood tests all come back negative for the antibodies. The Rheumo docs agree there is some type of problem but they are not sure what it is but definetly rheumatological things going on. Meanwhile I get frustrated as I have so many things going on and all treated by different doctors, which none of them truly communicate. It by no means is fun. Let me know if the acupuncture helps you. Good luck, I hope it does.
It is possible to have “normal” blood work and be diagnosed. That’s me as well. I have been diagnosed with psoriatic arthritis and Sjögren’s, and have had Raynauds since I was little. It sounds like your doctor is treating you appropriately.
Most of the people on this support site who are on biologics are like me, and have multiple diagnoses. For some reason many doctors appear not to use biologics if the only diagnosis is Sjögren’s. I have been using Enbrel for two plus years, as well as leflunomide. Before that aI was on plaquenil, then plaquenil plus methotrexate then switched to leflunomide.
I will have to ask her about your meds. Mine doc wants to put me on humira and I just don’t want to go on that. Thanks Stoney. I feel like I just get bounced around by doctors. Feel like a ping pong ball.
I think a lot of us are familiar with the frustration that comes with being diagnosed then finding a treatment path that works for us. You are definitely among people who get it.
I tested negative on all of the standard tests also. it was only when my opthamologist took a chance and tried the test that looks for antibodies specific to Sjogren's. Its so hit or miss for us. And the symptoms that pop up can be totally bizarre. Know that you can vent anytime. We are here.
Thank you I appreciate it. I am so glad I found this group. There is a group in Chicago area but they only meet like once every three months. Feel like there are not many people such as my family, friends or co workers that really understand, so I very rarely share anything with them. Thanks again.