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Facial Numbness + Pain + Neurological Issues but clean MRIs

I’m at my wit’s end at this point. I’m a 28f. I woke up one morning at the beginning of November with sudden pain in my right two little fingers, then over the week it traveled up my arm into my shoulder. I didn’t do anything to cause this pain, and OTC anti-inflammatories did nothing to relieve the pain. I was going from a pain level 4 to a 10 for two weeks before I decided to go see an orthopedic shoulder specialist. He gave me a dx of brachial plexus neuritis and told me to sleep more. I had full range of motion with my arm, no position would make the pain better/worse, but using my arm throughout to day wore it out and caused more pain. Also had a swollen, poofy spot near my collarbone he wasn’t concerned about. It felt sort of like a pocket of fluid and when I pressed hard on it, it hurt really bad deep inside. This has since disappeared and not come back.

Then the next few days, pain was now suddenly gone and the right side of my face was numb like I got shot with Novocain. I could still feel things but the whole right side felt deadened. Then my right foot turned out sideways but felt like it was going straight, and the whole right side of my body felt extremely weak and like someone was pushing down hard of my shoulder. The whole world felt tilted to the right, but I wasn’t dizzy. I also started to have a terrible time picking things up, and using my fingers felt as if I was just aiming them at objects instead of actually using them; sort of like using chopsticks for the first time. Went and saw my regular doctor who ordered a brain and cervical spine MRI and several x-rays and blood tests.

Numbness got worse the next day, so he said to just go to the ER. I thought I might be having a stroke or something. While in the waiting room in the ER, the numbness spread to the left side of my face and in my tongue. ER doctor suspected MS and did the brain and cervical spine MRIs, which came back normal except for a few white punctuate spots on my brain. The on-call Neurologist said the spots were from migraines. ER doctor wanted to do a lumbar puncture, but since I wasn’t an emergency anymore, I was sent home and under the impression that the neurologist I was referred to as a follow up was going to order the lumbar puncture.

Just over the course of 3 months all sorts of weird neurological issues kept happening, such as muscles feeling hard and painful then moving uncontrollably, weird buzzing/vibrating that felt like it was in my brain, ear pain, eye pressure, feeling glitchy, etc. Everything just came and went; every day was a new surprise. But the numbness in my face has never gone away. The pain in my shoulder kept coming and going.

Then it all sort of stopped for two weeks except for the numbness in my face. My right arm felt strong again, and picking up my 5lb weights felt normal. I could finally exercise again, and nothing I did to my arm caused it to hurt again. But it wasn’t to last: I ran into a door at a restaurant and had a stressful argument with my boss. That night the pain came back and hasn’t left.

This time around the pain is lot worse. My mom finally demanded my doctor give me some Gabapentin. She'd had it before for something and wanted to know why my doctor didn't even care I was in excruciating pain. I took 100mg for a few days with no affect, and I went back to the doctor, who then gave me 300mg pills. After the first night of taking the 300mg pills I had some strong euphoria and the pain felt much better, then the next day I woke up stuttering and my tongue was making sounds on it's own. I literally couldn't control it. I'm still unsure if the Gabapentin caused the euphoria and stuttering or not. I can still feel like the stuttering is there some days, but I can trick my brain to work around it and I haven't lost control of my tongue anymore. I also was slightly stuttering in November before taking the Gabapentin, so I don't know. I decreased from 300mg 2x a day to 100mg in the morning and 200mg at night.

I've also had a super weird episode where my body kept wanting to rock back and forth against my wishes, and if I tried to use either of my hands/arms, they went wild. Like I tried to call my mom on the phone, and my finger was going everywhere but the button to call her. I could force my muscles to be still, but any sort of movement, and I was rocking, and arms going crazy. My hand also would not release the steering wheel, and when I put the other hand on the steering wheel for leverage to pop the first one off, that one got stuck too for a good 5 minutes before I could release the muscles. That was actually the one day I was feeling much better and was a lot happier mentally. I went shopping with my mom, had fun chatting with people at work, etc. Then BAM random muscle problem. Also, when I was shopping, I was pushing the buggy, and I could NOT push it straight. It went left and right zigzag. My mom tested the buggy, and she could push it straight, so it wasn't a faulty buggy.

Also, at this point I'd started having tingling in my feet and both my hands constantly felt like they were being crushed by a small child. My hands still feel this excruciating crushing feeling off and on without provocation.

When I finally see a neurologist he tells me I probably have a pinched nerve and am being “hypersensitive” about my symptoms. Also that I definitely don't have MS because my brain and cervical spine MRI results are clean. Basically I need to stop looking up issues I'm having on the internet because he thinks I'm just imagining symptoms I'm reading online. He compared it to having a stomach ache and if you think about the stomach ache too much, it'll hurt worse. I'm in the process of find a new neurologist. I don't know how in the world I "imagined" the facial numbness when I just thought I had a muscle problem in the beginning and had no inclination to believe it was anything except a muscle problem. But anyway, he ordered a NCS, EEG, and EMG, all of which came back normal, so he's written me off and won't order a lumbar puncture, even though my symptoms are progressively getting worse. I'd also had enough of all these doctors sending me around in circles, so I demanded a right shoulder MRI. Which--lo and behold--came back with a mild case of rotator cuff tendinitis and a small amount of fluid on my bursa sac. So now my regular doctor is convinced this is the reason for all my problems and sent me back to an orthopedic doctor. I just can't even with this stupid hospital all these doctors are associated with. When I got the NCS, the doctor was training a student and told her that facial numbness is caused by the brain and can't be caused by any issue in the shoulder or neck, I guess as far as nerves go. I can definitely see why I would have rotator cuff tendinitis and fluid in my bursa sac because I work as a graphic designer and have to carry a heavy bag of gear every day, but I really don't think a "mild," as the radiologist put it, case would be causing such extreme pain. I literally couldn't use my hand at work one day and have been in constant tears from this excruciating pain. Plus, I can raise my arm fine and put it behind my back with no difference in pain.

Anything that has made me feel better or provide results has come about only because my mom and I DEMANDED the doctors do it.

Sorry for the rant, but I guess my reason for posting is to ask a few questions from people who have been dealing with MS so I can be better prepared when I go find my own neurologist.

1.) Can MS cause something like my mild tendinitis and bursitis to feel worse? Also can MS cause inflammation to show up in a muscle on an MRI? This pain is so debilitating.

2.) I feel like I'm getting written off because my brain and cervical MRIs are clean, but I've read several places online in medical journals that you can still have MS with clean MRIs, also that you can have lesions in your spine that can be causing symptoms. Has anyone here finally gotten a dx of MS with clean MRIs?

3.) Since this is the very first time I've had an attack like this, and they did brain and cervical MRIs within about a 1-2 week period from my initial neurological symptoms, could I have since formed a lesion in my brain/cervical spine? I don't know, I feel like since I got the MRIs so close to when I started having an issue, maybe the lesions hadn't become visible yet? No one's said anything about re-ordering them, even though I'm now 3 months still having symptoms.

  1. kombuchadreams, I'm so sorry to hear of the difficult time you have had trying to find a diagnosis. I am sure it has been more than frustrating for you. Though we cannot give you answers, we can give you information that may be helpful and we can provide you with access to others who have also been where you are now, looking for answers to "what can this be?"

    The reason we don't give medical advice is that each person's situation is unique based on their personal health history, genetic makeup, environmental exposures, medications, injuries, and much more. However, we do have some general information that may allow me to answer some of your questions.

    1. You ask can MS cause tendonitis or inflammation to muscles? MS is a condition that affects the nerves of the body. When you hear about inflammation it refers to inflammation of the nervous system and the myelin surrounding the nerve. It does not affect the tendons or the muscles.

    2. In about 5% of cases, lesions do not show on MRI testing. However, in such situations, other evidence such as evoke potential or cerebral spinal fluid results support the diagnosis.

    3. The lesions would have been what would have caused the symptoms to develop in the first place; not the symptoms causing the lesions so they would have been there when the test was performed if they were present. They might have gotten worse but some evidence of them would likely have been present.

    There are many neurological conditions that could fit what you are describing in addition to MS plus it could be influenced by the medication you are taking as well. I hope you can find a neurologist soon that you trust and who will do a comprehensive review of your history with you. Good luck. Donna Steigleder, Moderator

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