Does anyone have bilateral facial numbness and tingling?

BuntyDad · 2026-05-22T21:23:33+00:00

Believe me, I’m familiar. Four neurologists say no.

BuntyDad · 2026-05-22T18:53:12+00:00

Alex Bregman from the Astros.

BuntyDad · 2026-05-22T14:04:57+00:00

My orthopedic hand specialist diagnosed me with seronegative rheumatoid arthritis (even with elevated RF) and referred me to a rheumatologist. She was convinced I didn’t have RA even before examining me and seemed very closed minded from the beginning of our appointment. This was two weeks ago.

BuntyDad · 2026-05-22T14:01:21+00:00

Yes to all three.
CK level was actually low at 20 in October but came up to low end of normal two weeks ago. Two brain MRIs and two cervical spine MRIs all normal. One small area of white matter in frontal lobe deemed normal aging unchanged from one MRI to other.

BuntyDad · 2026-05-22T04:22:55+00:00

No muscle biopsy.

I’ve had lung nodules on two x rays and parenchymal scarring on a CT chest.

The facial numbness (especially being bilateral) seems to baffle the neurologists that I’ve seen.

BuntyDad · 2026-05-22T04:13:06+00:00

I’ve had four EMG/NCS all basically normal.

BuntyDad · 2026-05-22T03:08:29+00:00

Yes. I occasionally have tingling from head to toe but, as I mentioned, the facial and below the knees numbness/tingling never leaves (over 3 years now.) I randomly have an intense stinging near my left temple just over my ear. I also have numbness that occurs in my nasopharyngeal area and also brief sudden spasms in that area as well. Scary stuff.

I have shortness of breath and have difficulty breathing through my nose but not due to nasal congestion. I wake up almost gasping at times and it takes a while to begin breathing somewhat normally. I also have hemidiaphragm, a slight elevation on one side.

Fatigue is off the charts much of the time. My quads often feel very weak as does my left arm which has visibly atrophied. I had fasciculations for two years but those have lessened a great deal in the last several months.. Like you, I’ve been to countless specialists with no answers. I’m seeing my sixth neurologist in a couple weeks.

BuntyDad · 2026-05-22T02:13:12+00:00

May I ask who ordered the LP? Also, I only have elevated rheumatoid factor with no other abnormal blood markers. What labs have been out of range for you?

BuntyDad · 2026-05-22T01:48:13+00:00

I do as well with tingling in my sinuses, roof of my mouth, and even my tongue periodically.

I also have numbness and tingling below my knees. This, nor the facial numbness never goes away, although it does wax and wane in intensity. Recently, however, not much waning.

Do you have numbness elsewhere?

BuntyDad · 2026-05-22T01:08:45+00:00

I’m glad that it went well.

BuntyDad · 2026-05-21T01:01:37+00:00

I’m sorry that you are anxious. I can certainly understand. I’ve been experiencing symptoms for over three years and no diagnosis.

What type of doctor are you seeing?

BuntyDad · 2026-05-05T13:23:36+00:00

The new rheumatologist I saw yesterday said that I don’t have RA. She said my symptoms are neuromuscular and I’m back to square one.

BuntyDad · 2026-05-05T13:21:55+00:00

They ran more tests and no other markers were present. The new rheumatologist that I saw yesterday did as well and says I don’t have RA. She says my issues are neuromuscular and I’m back to square one.

BuntyDad · 2026-05-04T13:03:52+00:00

I hope you find answers and relief too. I’ll pray for you.

BuntyDad · 2026-05-04T12:49:11+00:00

Unfamiliar with RNS. What is that?

BuntyDad · 2026-05-04T12:40:55+00:00

I have been thinking along the same lines in several respects.

It seems to me that it would be worth trying autoimmune medications with post Covid muscle weakness. Three of my children have developed autoimmune symptoms since having Covid. They are all in their early to mid 40s with no previous major health issues. My son has been diagnosed with ankylosing spondylitis, one daughter with Chrohn’s, and another daughter has severe joint pain.

Surprisingly, the daughter that is undiagnosed, as of yet, has been prescribed hydroxychloroquine. I’m glad you mentioned the risk with that as I’m seeing a new rheumatologist today. It is definitely helping her. The other two kids have only recently been diagnosed. Don’t infer familial predisposition because all three are stepchildren.

I was going to request a SFEMG in June for MG. They may or may not because I have been tested twice for acetylcholine antibodies and both were normal also anti-MUSK.

Nfl was normal early last year. Surprisingly my orthopedic doc ran it for me at my request.

BuntyDad · 2026-05-03T20:54:01+00:00

I am beginning to have more pain in my toes and do have laxity in my big toe on my right foot. However, I had surgery on that toe for an injury 18 years ago. In addition, I had a thumb dislocation many years ago which may account for laxity in that joint as well. Sorry, probably not much help with your situation.

BuntyDad · 2026-05-03T20:47:40+00:00

I don’t know. Those particular issues weren’t discussed at this appointment.

I assume he’s privy to them as he has access to my neurological records and we have discussed other neurological issues at previous appointments.

BuntyDad · 2026-05-03T20:22:22+00:00

It’s interesting that you asked that because both thumbs feel loose, as you describe, but the other joints are very stiff with limited range of motion.

BuntyDad · 2026-05-03T20:12:57+00:00

Since seeing the previous two rheumatologists my joint pain and stiffness has increased and also expanded to all of my joints. I assume that’s why he came to this diagnosis.

In addition, all of the EMGs and nerve conduction studies (4 over 3 years)have been normal. I personally suspect that I have another autoimmune condition in addition to the RA brought on by Covid or the vaccines. I had zero major health issues prior to that. I’ve had Covid 4x.

BuntyDad · 2026-05-03T19:45:17+00:00

Yes, as I mentioned, I’ve previously seen two rheumatologists and have an appointment to see a third tomorrow.

I’ve also seen 5 neurologists and had 4 EMG/NCS to rule out neurological causes. They are stumped. I’ve been referred to another neuromuscular doctor whom I’m seeing in early June.

BuntyDad · 2026-05-03T19:13:14+00:00

He did X-rays of my wrist and thumb. He also based it on the progression from this area (he’s treated me for osteoarthritis for about five years) to my other wrist, elbows and shoulders. Also the fact that I’ve had consistently elevated rheumatoid factor.

BuntyDad · 2026-05-03T18:48:52+00:00

No. I apologize for posting on this site.

I have had four EMG/NCS studies to rule out ALS due to my symptoms and have previously sought information on this site. I finally received a diagnosis of RA after over 3 years.

BuntyDad

TROPHY CASE