Mystery case, Sjogren's?...and a bit of a long post

Posted , 3 users are following.

Sorry for the long post, but here goes. I have had Fibromyalgia since 1998, Hashimoto's Thyroiditis and more recently Raynauds. I've been doing well until April of 2020. I woke up one morning with no hearing in my right ear and numbness and tingling on the whole right side of my face. I was struggling to speak because of the numbness. I spent the night in the hospital being checked for stroke or TIA. Bell's Palsy was ruled out as was stroke and TIA. I was then sent to an ENT for a potential acoustic neuroma. All the symptoms fit. That wasn't it. Then I was sent to John's Hopkins Neurology and was again looked at for a brain tumour and vascular issues, nothing. My Neurologist had blood work done for giant cell arteritis and a few other things. In the mean time, I had my eyes checked (I seem to have a lot of dry and tired eyes, but can cry) And, also had my year old tooth implant re-examined to be sure that wasn't the cause. My dentist diagnosed me with dry mouth. Almost nothing coming out of my glands when she squeezed them manually. Lastly, a few weeks ago, my Neurologist recommended blood work for Sjogren's and Connective Tissue Disorder after see my labs from the past 3 years from my Rheumatologist. My blood work is just weird. My ANA is negative, but my ds-DNA is elevated, Scl-70 elevated, Jo-1 elevated and C3 is low. But nothing is dramatically elevated...except my Hashimotos (which has been stable for years). A few other things are off on my CBC (indicating mild anemia) My SS-A and SS-B are both in normal range. My face has been numb and tingling for a year now, my hearing has mostly returned, but I have tinnitus. I also feel sharp pains in my head occasionally, fullness behind my eye, itchiness from the tingling, pain around my ear and sometimes my lymph nodes or salivary glands feel tender, but not swollen. It frequently reaches into my neck on that side. On occasion the tingling has extended to the shoulder and hands. I now have a referral from both my Rheumatologist and my Neurologist to the Sjogren's Dept. at John's Hopkins. I'm waiting to hear back about a consult date. I'm on Lyrica for one month to see if it helps. So far it has done nothing for the nerve tingling. In looking back at my blood work for the past 20 years, there has always been a mild anemia and the symptoms of numbness and tingling in various parts of my body have been going on for almost 10 years. Any thoughts are appreciated! Oh, I forgot to mention that in February of 2020 I was having allergy like difficulty in breathing and heart palpitations (I've had them since 1984). I had a full cardiac work up and I have PVC's that I just happen to notice more than most people. Now once again this year around the same time, I'm having the same issues again.

0 likes, 1 reply

1 Reply

  • Edited

    What you have is advanced lyme disease and coinfections causing all this. Common Lyme tests are not reliable, test with a lyme competent doctor. You dont need to remember a tick bite to have Lyme. Mainstream doctors are unable to recognize Lyme even when the patient exhibits all the classic symptoms... a shame for the medicine.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.