My fellow dopers, my mother is ill. She has experienced prolonged facial paralysis for about 4 years. It is bilateral, but it started more on her left side at first. She has endured many tests, including 2 spinal taps, multiple MRI’s, countless bloodtests, etc.
The diagnoses have been all over the map as far as possible treatments, yet all point to an auto-immune problem that is targeting her trigeminal. First she was treated for Lyme…then Lupus…she feels that the medications make her feel dopey, and she wants to be able to determine if she is feeling oddly because of the quasi-diagnosed condition, or if it is just the meds.
I will need to consult with her about what she is currently taking as far as meds and herbs, etc. I will post it later. But my question is more of a diagnostic one.
Those of you in the field, or who have experiences with something relevant, who have any suggestions for diagnostic procedures that she should ask about, please post to this thread.
I’d like to start from scratch and rule out those that she may have already have, as long as they are still valid.
Thankfully my mother has insurance and has been seeing specialists at Stanford on occasion. I would like to make sure there aren’t some diagnostic stones that are yet to be looked at so that Mom can at least feel confident that she knows what is wrong, and how best to treat it.
The numbness began between her left upper lip and her nose…these more deeply affected areas are also affected with poor muscle control as well as numbness.
Hair and weight loss, though no cancer has ever been detected. She feels that she started losing weight because chewing and eating became much more difficult, and her tongue is also numb so it affects her ability to taste and enjoy food. However, she has now adapted her eating habits and says that she eats enough easily chewed food “to kill a horse”. Yet she hasn’t shown any signs of gaining that weight back, even with a rich high calorie diet, so there may be something going on with her metabolism too.
Her teeth are moving and have become quite crooked in recent years, though her dentist and doctors do not think it is related.
She thinks that the symptoms may have been triggered or heightened by menopause. The beginning of the paralysis loosely coincided with that.
After spending my vacation with her recently, she told me that she is having trouble focusing her eyes on things, such as groceries on the shelves at the supermarket. She has to concentrate really hard. The periferal twinges of numbness are all the way into her hairline and scalp now, so it is possible that some eye-related nerves are being impacted, though again, her optometrist and doctors have not sounded any alarms and are aware of her other symptoms.
She has also complained of a “brain fog”, but as I mentioned, this may caused by her medications.
Is she experiencing any problems with temperature detection (apart from possible hot flashes due to the onset of menopause)? Like, does she have trouble feeling hot and cold in her extremities? Motor coordination issues?
if she hasn’t seen an ophthamologist, she probably should…optometrists (no offense to any of them) are basically trained to prescribe glasses…she needs to see a medically trained eye doctor
She hasn’t mentioned any hot flash issues for at least a couple of years, and as far as I know, she has noticed nothing strange about temperature perception in her extremeties. Would that be considered a lupus symptom? She hasn’t (as of yet) had any of the joint pain that many lupus sufferers endure.
Upfront, I need to say that I am NOT a doctor so this is all WAGs. I’m asking questions based on some things I learned while studying neurobiology in college. I asked the temperature sensation question to rule out something remote like syringomyelia or multiple-system degeneration. As far as I know, temperature sensation (or lack thereof) isn’t a lupus symptom.
I’m assuming that your mom has seen a neurologist or neurosurgeon at Stanford. If not, that’s something I would insist on because something’s obviously wrong with the facial nerve. Even though the docs seem to think it’s more an auto-immune issue, I wouldn’t rule out something neurological. My first thought was something like trigeminal neuralgia combined with something else, but patients experience more facial tics and pointed pains, though persistent aches & paralysis can also occur. For what it’s worth, these symptoms also appear in multiple sclerosis and Bell’s Palsy patients. Something related is myasthenia gravis – that would explain the tongue and jaw weakness.
She is seeing a neurologist at Stanford, and she has seen an ophthalmologist.
MS has certainly been on our minds as a possibility, but attempts at pinning the diagnosis down in that direction have proven inconclusive.
As far as Bell’s Palsy goes, bilateral numbness is not seen in the majority of cases, but we have certainly considered it and asked about it in the past. Again the indicators are basically inconclusive there as well.
The Lupus approach has been pretty consistent over the past year. She has had bloodwork indicating a consistent level of auto-immune indicators in her blood. Earlier blood tests were dismissed as a invalid because these indicators were so high, but the neurologist was persistant about repeating the test which confirmed an auto-immune disorder as the leading possibility. She also proposed that Mom’s high pain threshold may be disguising some symptoms that other Lupus sufferers might have already noticed by now.
Another frustrating thing is that there has been no improvement since going on Lupus medications. The numbness continues to slowly spread and deepen.
I’ve had Bell’s Palsy twice, and it wasn’t much like what your mom has at all. The biggest difference being that both times, I woke up and half of my face was paralyzed. It was nothing like gradual. The first time, I noticed that food was tasting funny the night before. The second time I had no warning.
Then, it gets gradually better (if you’re lucky) until it goes away. Not being able to taste on half your tongue sucks a lot. My diet changed a lot to reflect texture instead of taste.
Anyway, Bell’s Palsy is sudden paralysis, not this slow-and-getting-worse one that your poor mom has.
My Mom just returned from a checkup at Stanford. Her new neurologist has abandoned the Lupus diagnosis, and has taken her off all medication. (The only med she had still been taking was Prednizone, which she will now gradually stop using).
Hopefully getting off of the steroids will give Mom some respite from her brain fog and other not-so-pleasant side effects.
The new Doc admitted that Mom’s case was “unique” and that he had never seen anything quite like it, but he did not consider her condition as potentially severe as some of her previous physicians. His best guess is that her body will slowly repair the problem, and that the numbness will retreat, probably at about the same gradual pace as it expanded.
The three most important factors that are being examined for a diagnosis are all events that occured around the time that the symptoms presented themselves:
Menopaus
A flu shot
A tick bite
So Lyme and Lupus have again been set aside, and the strongest possibility appears to be a post-menopausal reaction to a flu shot. Mom stated that she was menopausal when she was offered the flu shot, but this appeared to be of no consequence to whoever gave her the injection. However, Mom has now spoken to many health care professionals who refuse to give flu shot injections to menopausal or post-menopausal women.
Flu shots have been linked to allergy problems. It seems a bit of a leap to go from allergies to extensive auto-immune damage of the trigeminal nerve, but auto-immune is auto-immune. There is certainly room for more research in this area, and yet another reason to carefully consider flu shots for yourself and those you love.
Glad to hear that your mom’s new neurologist is going down a new path. Lupus sounded kinda weird. Anyway, I hope that once the meds work out of her system, she’ll start to feel better. And that her doctor nails down the problem!