I am a 70 year old woman. In November 2015, my whole face and mouth suddenly went numb and I started getting a variety of intermittent pains and aches in those areas. I have been seeing a neurologist and a rheumatologist who say that I have trigeminal neuropathy. An MRI showed that my trigeminal nerve is inflamed. They think that it is caused by an autoimmune disease, but I do not have enough symptoms to be diagnosed with any one disease. So, at the moment, they are calling it a connective tissue disease. A few months ago, my hands suddenly started swelling and my hand and wrist joints have enlarged and I have a lot of pain there and in my upper arms and back of one knee. The rheumatologist says it is polyarthritis/rheumatoid arthritis, even though my RA factor is only slightly elevated and my CCP test was negative. None of the treatments has given me any improvement other than being able to chew a little better. My sense of taste has gotten worse. Also, two weeks ago, I came down with my second episode of shingles (the first one was about 15 years ago). They think it was brought on by the physical and emotional stress of my disease(s), but I am wondering if it is related to a new medication (methotrexate) I had just started. Luckily, I started an antiviral right away and stopped the new medication, so caught it before it got really bad. Once the rash clears up, I am supposed to resume the methotrexate, so am worried. Does anyone else have bilateral facial numbess and mouth numbness with pains and difficulty chewing and speaking?
Have you been tested for Bells Palsy as yet? Has your face dropped on the side you are having pains?
No, I don’t have Bell’s Palsy, they say. I do have a slight droop, but my problem is that my face is numb on both sides because the trigeminal nerve in my brain is inflamed. My problem is sensory, not muscular. But, some muscles are affected because of the numbness, so they lose function because they can’t feel. Besides the droop, I have difficulty chewing and some difficulty speaking. Since both sides of my face and mouth are afflicted, I am a medical rarity. I would love to find another person with bilateral trigeminal neuropathy with whom to exchange experiences. But, so far, there hasn’t been anyone.
Pat - I had bilateral, but it turned out that my TGN was more a symptom than the cause. My neurologist recommended an immunologist who tested me for -
among some allergies - Streptococcus Pneumoniae IgG Ab. Turned out ALL 14 of my Serotypes were below the 2.0 threshold (eg., Serotype 1-5, 8, 9 (9N) etc.). He gave me the pneumonia vaccine, and my TGN symptoms went away, and stayed away for quite awhile.
About a year later they started to return… I went and had my blood tested and sure enough, 10 of the 14 markers had dropped under the 2.0 threshold. He gave me the vaccine again and viola, no more TGN symptoms.
Hope this helps.
Thank you! I have not seen an immunologist. I will ask my rheumatologist about that. Nobody has said anything about serotypes. I saw an allergist and was tested for allergies last year and the only results were some trees, grasses and dust mites. Was the test you were given for some specific allergies? I haven’t had the pneumonia vaccine because I think vaccines are creepy. Children definitely need them, but at this point in my life, I don’t want to add anything foreign to the mix of stuff wrong with me.
I don’t know the name of the test. But it was just a simple blood test to
identify the levels of the 14 serotypes (?) associated with Streptococcus
Pneumoniae IgG Ab. Quick - I was in and out in 5 min, results back in less
than a week. You want at least 10 of the 14 over 2.0
A little more than a year later my symptoms began returning - pressure on
both sides of my face along checks/temples, building in intensity, tingles
of pain along my three facial tri-geminal areas, (and I had a little
swelling in my neck which perhaps is unique to me). Got the blood test
again and sure enough, I had dropped back under the 2.0 threshold on most
of them. Got the vaccine again, and 3-4 weeks later the symptoms were gone.
Haven’t had a follow up blood test yet, but when I do I’m willing to bet my
numbers will be north of 2.0.
Now, I don’t know if this is a long term solution… Likely need to sit
down with my immunologist and figure out why this is happening to me.
But I was lucky enough to have a smart neurologist who, after crossing off
every other option, knew a smart immunologist who checked for this. I
suppose I hope you are in the same boat, which is a weird thing to wish for
someone, but it’s better than the symptoms!
PS. If your doc doesn’t know what I’m talking about, ping me again and I’ll
list out all 14, rather than the few I did above. But it’s the 14
associated with Streptococcus Pneumoniae IgG Ab.
This should help: https://education.questdiagnostics.com/faq/FAQ181
The first time, I was tested for the following:
Serotype 9 (9N)
Serotype 12 (12F)
Serotype 19 (19F)
Serotype 23 (23F)
Serotype 26 (6B)
Serotype 51 (7F)
Serotype 56 (18C)
Serotype 68 (9V)
IgG Subclasses Panel
IgG Subclass 1
IgG Subclass 2
IgG Subclass 3
IgG Subclass 4
Thanks, Rmazusa. Did you have any problems with your mouth? I have problems with chewing and my mouth tissue is ultrasensitive besides being numb () and swollen. I have to be very careful chewing because it is easy to bite the swollen tissue on the inside of my cheeks.
My rheumatoid disease symptoms in my hands and wrists (painful, stiff joints) are under control. The joints are still huge, but at least my hands are functional again. I take hydroxychloroquine tablets and self-inject methotrexate.
My latest diagnosis for my mystery disease is connective tissue disorder, which means that they have no idea what is really wrong with me. While my sudden onset rheumatoid disease is being controlled, my trigeminal neuropathy has not improved. Frankly, I don’t believe that trigeminal neuropathy is a real condition. There are only a couple of references to it when I search and almost every search result brings up trigeminal neuralgia instead. I can’t possibly be the only person in the world with “trigeminal neuropathy”. I think that my medics have given up trying to find out what is really wrong with me.
The first diagnosis I had was neuropathic pain in the trigeminal nerve.But I do not know what they think I have now.Doctors keep changing and each has a new name But no solution.
Wishing you a pain free new year.
Thank you for this information!
Which vaccine did you receive - the five year one (pneumococcal vaccine polyvalent) or the longer term one (pneumococcal 13-valent conjugate)?
Hope you have been well this year!
I believe it was the five year one. It wears off quickly for me … about a year. And when it wears off, my symptoms come back. Crazy. In fact, I have a note here to call my doc and ask for the blood test again to see where my markers are (for the 14 Streptococcus Pneumoniae IgG Ab antigens). You should have like 8-10 of the 14 over 2.0 … when I took the test the first time, I had zero.
Please confirm that you received this … or I will go into the website and add it in manually.
Yes, I received your helpful reply!! Thank you
I am one of those rare birds with bilateral TN 2, burning mouth syndrome and numb chin syndrome. I have had no procedures other than imaging, which for me showed a vein touching the trigeminal nerve on one side and an artery on the other side. I believe my condition resulted from a fall and hitting the back of my head. Yes, it is extremely difficult eating and talking. Food and liquids, including my saliva, escape my mouth, so I am never without a napkin. The irony is that I am a speech-language pathologist. And I sure have been working on treating myself, learning more than I really ever wanted to know. I hope you find help in some of the posts here in the Living with Facial Pain Assoc. website. Our pain is so bad that we continually search for solutions. This site presents the experiences of others in their quest for relief. I hope you are finding your way with living with facial pain.
I am glad that they saw something concrete on your MRI.
My condition remains the same. On my last MRIs, they have no longer seen inflammation of the trigeminal nerve that they saw originally. So, it appears that my trigeminal nerve is perhaps not the cause of my symptoms. I will have to check with my doctor to see if he wants to withdraw the diagnosis of trigeminal neuropathy. My most recent general diagnosis stands–connective tissue disorder. I am still a medical mystery. The last time I saw my rheumatologist, I told him there had still been no improvement. He responded that I should be happy that it hasn’t gotten worse. That really bugged my eyes out. It is scary to think that the condition could worsen. At least my horrible joint pains and stiffness are under control due to medical remission. I take methotrexate and hydroxychloroquine.
What is the next step in your treatment? Would surgery help?
I am writing to provide information on my personal condition in hopes it might help others. I came to this site because last July 2018, I started suffering from right-side facial numbness which started creeping over to my left-side upper lip. I was afraid I had a stroke or at best, Bell’s Palsy. Since I was out of town at the time, I went to a Family Practioner I had seen before.
The Family Practioner treated me with a series of
3 vitamin B12 shots as she suspected Bell’s Palsy also. Since that did not work, she had me see a neurologist (who is actually a neurosurgeon). His working diagnosis was Trigeminal Neuropathy (although a little stumped that the numbness was bilateral), put me on gabapentina and ordered a Head CT scan with contrast. That came back normal. I was getting ready to go back home (in Mexico) so decided to do the recommended MRI and nerve conduction studies there. Before I left, I did get the pneumonia shot as recommended here.
Once home, I saw another neurosurgeon who ordered the Head MRI. This showed four cranial lesions - one frontal bone, one right parietal, one left parietal and one in the sphenoid, this being the one suspected of causing the numbness as it might be pressing on the Trigeminal Nerve. From here, I was referred to an Internist who ordered many laboratory tests and a nuclear medicine bone scan. Those tests were unremarkable.
So, back to the neurosurgeon for a CT scan without contrast and then a biopsy of the frontal lesion of my cranium. After second level histochemical staining, our working diagnosis became Sarcoidosis. This was confirmed by a Chest CT scan with contrast. The cranial lesions were secondary to the lesions in my lung lymph nodes and vessels. Finally, after eight months, I am being treated with Prednisone and vitamin D.
As for the facial numbness, this may or may not go away. The neuropathy is either from the sarcoidosis (one of the symptoms) or it is, in fact, from the cranial lesion pressing on the Trigeminal Nerve. Time will tell.
There is a lot of information out there that can scare the heck out of you or misguide you. Find a really good doctor or a team of really good doctors you trust (like I did). The best advice I was given is to only read information published on the internet by Associations (ie American Lung Association) as they tend to be the most accurate.
Hopefully, my story will help someone else.
Are your entire face and mouth constantly numb? Since the fall of 2015, I have had permanent bilateral trigeminal neuropathy, which came on almost overnight. Scalp, eye area, face and inside of mouth are constantly numb, swollen and, oddly, some areas are hypersensitive. It is very difficult for me to chew because I bite the insides of my cheeks and my tongue. Also, my speech is affected. The original MRI showed inflammation of the trigeminal nerve. Since then, my MRIs have not shown any inflammation or other problem with the trigeminal nerve. My neurologist and rheumatologist think the neuropathy is caused by an autoimmune condition, but can’t diagnose me because I don’t have enough symptoms of any one autoimmune disease. They have basically given up on me.
Six months later, I was struck by rheumatoid disease. I am now on methotrexate and hydroxychloroquine and in medical remission for that, thank goodness. But, my doctors have no idea about my trigeminal neuropathy. They say they have never seen a patient like me.
There are very few people who have bilateral trigeminal neuropathy. It is a very lonely feeling. I am glad to hear about your case, though very sorry that you are suffering from this horrible condition. At least, since your MRI has shown actual problems with the nerve, there is hope for you.
I wish you the best and will follow your story.