I am not diagnosed with MS. I think some of my symptoms are similar, but in no way make me think this is my condition. My doctors do not know what is going on. Excuse me on my grammar. Not very good with grammar.
It was around March 2015 that I started to notice this weird swelling sensation around my right eyes, pushing again my eye ball or at least that was how it felt. I was also having abnormal right eye movement when I shifted my focus to the right. As summer approached, the sensations of swelling, numbing, tingling, cold chill under the skin spread to my cheek by May (my right side of the tongue felt like it swell too), towards my right lip by June (drooping sensation), and by August down my neck and shoulder. Since the facial numbness spread down to the neck and shoulder, I would have spontaneous ache (sometimes mild pain, sometimes very intense where I had to lay down) only on the right side of my neck and shoulder. I also experienced swelling sensation where my right facial slightly swell but most people won’t notice, problems with positional awareness (feel right side isn’t align with left, feel as if right lip and shoulder are drooping down, can’t feel shoulder as if it is not there, and can’t feel right lip like it is all the way down by the jaw bone) and right cheek is quite firm making smiling an extra effort to match it to the other side.
My doctor whom I just established connection with for my 6 years of neck and shoulder pain/ache, said it was not a tumor. I don’t know if my neck and shoulder issue is related to my facial numbness. MRI of the neck and shoulder showed that I had a slight straighten of the neck, but that did not explain why I have this constant ache (tolerable), spontaneous ache as if it is coming from deep in the tissues (kinda tolerable), neck and shoulder ache after a headache (not tolerable), after/during stress (depend on the situation), and ache even when I sit at the computer for a short duration of time.
My neurologist had a CT scan done and blood test trying to figure out my facial numbness. Nothing abnormal. She would like to referral me to San Francisco by May 2016, but Medi-Cal Anthem Blue Cross made it so hard. The referral staff told me I had to make the referral through my primary doctor, while my healthcare sent me a letter half in English, half in Spanish (not my native language) stating they want a second opinion (I understand because that part was in English). My clinic didn’t tell me my primary doctor left, so it took me a while to get in and get a referral only to be denied by healthcare. I was refused under the based that I did not show signs of headache abnormality such as cancer or tumor. I went to see my doctor asap and he confirmed he referral me for facial numbness not headache. He made another referral in which I got another letter stating there was not enough evidence to say I need this visit. I got that last deny letter, but I never got the request I made for them to send me all the information they used to make the first decision. While in the process of getting a repeal through independent medical review, I was told I am not longer eligible for Medi-Cal. Ending this September.
Recently, I received the letter that my appeal has been denied under these reasons which I also include my responses:
• brain and spinal scan were normal
• mild pain – no, it is not mild. There are times when this lead to intense neck and shoulder ache. Not tolerable. Who can work with an achy neck and shoulder, even if it is one sided?
• was not treated for my complaints – how can I get treatment if my doctor doesn’t even know what is going on
• symptoms do not require medication – Just cause it does not require medication, doesn’t mean I shouldn’t get the right to find out what exactly is my medical condition.
• nervous system and reflexes exam were normal
• symptoms are not severe or worsening – Symptoms has worsen, as it started at one area and spread down.
------- Other medical condition that may or may not relate to my facial numbness
This may not be related, but I am very fatigue and usually would start to feel drowsy within one to four hours after waiting up. I don’t wake up rested, but very tired. If you let me sleep, I can until I have headache from it. I am also having issue with short-term memory where I find multi-tasking hard, walking into a room or reaching somewhere like
opening the refrigerator and forgetting why I am there, forgetting how to spell words, and easily distracted or other times hard to concentrate. Whenever I find a good balance so my neck won’t be achy in the morning (sleeping with a towel as pillow), I would usually wake up with back pain. Whenever I sleep on my normal u curve pillow or a normal pillow, I wake up with achy neck and shoulder but no back pain. Something about
I had gain weight from my 125lb to now 131 pound. Not a whole lot, but then I also don’t eat a lot too. Sometimes I only have two meals a day or a big meal a day like I am fasting haha. I don’t eat chips or junk foods. I get a hamburger once in a while. No soda, although I do love my Starbuck Frap. When I get ice cream I watch the sugar grams. I think my life style is pretty healthy. I get all my exercise at my work place. Aside from that, I have been dropping my keys lately. Too often. I don’t know what this meant. I start to immediately slip my finger through the loop to prevent dropping them or put them in my purse. I also forget where I place thing a lot of the time.
Recently, I started to have itchiness around my inner eye. I rubbed causing red and inflammation, then later the skin flaked off. I have seen a dermatologist for this. The ointment sting and is slow to help heal. The doctor instructed me to buy some lotion to keep moisture in, but I don’t like them. They make my face burn the day after. I find dermovate the fastest and most helpful. But it is corticosteroids and bad for the thin skin around my eyes. I use it wisely, and rarely.
---Ranting from here on out
It’s frustrating. It is hard to bear when my own primary doctor initially told me to bear with it and it will go away. As if!! It wasn’t until I followed her out of the visiting room, that she gave in and said she’ll referral me to a neurologist. Then when she no longer work at the clinic, I wasn’t even notify!!
My neurologist sent me to get a CT scan of the brain, then a blood test. Nothing wrong. Nothing to explain what is going on. Every time I was given the wellness sheet, I always circled the fatigue word, but she never asked me about
it. I saw her three times, in one year, three months apart between each visit. It was on the third visits, that she said she does not know what is going on. But she offered medication to relax the muscle. I know those medications. I took them before, for a different condition I can’t even remember now, but what I do remember was the miserable side affect. I declined cause my issue isn’t the muscle or so I think. It was me who asked for a referral to other specialist or another neurologist. She referral me to San Francisco, which my healthcare refused to pay cause it was out of network and they deem my condition as a “mild pain” and is not “severe.”
Since I am not on Medi-Cal after this month, I am working toward getting health insurance through Cover California. Hopefully, they will have a plan that allow me to visit the proper specialist. But I am feeling that will require some big bills . Having so much medical conditions, I don’t know how I will continue to survive in my job or any new job since I am looking to change.
What can I do when there is no evidence to explain of what I am feeling? I feel like a bucket with too many cracks and holes, that it struggles to even stay together in one piece.
I am thinking about
getting acupuncture, but I don't know if this is something safe due to my tingling, numbing, and sensation of swelling.
Post Edited (Infinitycycle) : 9/23/2017 3:53:11 AM (GMT-6)