Hello everyone, my name is Suzanne and I'm new here. I literally feel like I'm going CRAZY! I'm not even sure where to start. Lets see, about a month ago I noticed my face was uneven. I took a picture of myself with my cell phone and showed my husband. My left eye was significantly lower than my right as were my eyebrows. I played it off as allergies or something, I wasn't really having any pain so I tried to ignore it. However, the next day it was really bothering me about my eyes being uneven so I sent a message to my friend who is a nurse. She instructed I go to the ER ASAP! Of course I was hesitant and just played it off, but she said it could be a stroke, mini-strokes, etc. and to be better safe than sorry. So, I went and they basically just diagnosed me with Bells Palsy. They said my blood work and CT were fine and to just follow up with my primary doctor.
The next day I went to my PCP and he just basically played it down, said it was just a case of Bells Palsy but he wanted me to have an MRI with dye and some more blood work done for Lyme Disease. Well, I was told everything came back normal but set up an appointment for me to see a Neurologist, but I don't have my appointment for another month!
Here's the bottom line. When I saw my PCP I told him all my symptoms - Numbness, tingling, twitching, pain in left hand between index finger and left finger, pain in right hand and trouble moving my middle finger, migraines, extreme fatigue, floaters in my eyes, dizziness, etc. That was about 4 weeks ago. Since then, I've been having some really WEIRD things happening to me, things that are somewhat hard to explain and really have me worried.
These symptoms have been ongoing for the past few weeks, and a lot of them either alternate or come in spurts! Arm tingling (weird sensation under the skin), head tingling (feels like bugs crawling), face tingling (constant itch type feeling), weird body vibration (as if a cell phone is going off in my pocket or something), blurry vision (difficulty reading street signs when driving), smokey air sensation (as if there is smoke in the room), headaches, migraines, stiff neck and neck pain, ringing in ears, arm, leg and foot aches (like really bad growing pains), burning skin on elbows and surrounding skin which is hot to the touch (usually goes away within an hour), lack of strength in my hands and due to ongoing hand pain unable to grip objects and pick things up, when I'm sleeping I'm woken up by a very strange feeling...almost like my head and face are numb and my hearing goes "off". This comes in pulses like every 30 seconds and last for 2. The EXTREME FATIGUE is terrible. I feel as though I've been tranquilized and then it wears off and I have a lot of energy!!
I know these are A LOT of symptoms and I"m not the type of person that usually keeps track of everything or is in tune with everything going on with my body. However, I started keeping a journal to keep track of my symptoms and the severity and any new symptoms. This is the majority of what I'm dealing with every day!
I know there are a lot of you out there that may have had or are having the same issues I'm having. Perhaps some of you had similar symptoms and it took a while for you to get any kind of diagnosis. Any feedback, guidance, support, information, etc. that anyone may have would be a GREAT HELP to me!! Help me to NOT FEEL SO CRAZY and ALONE!
Hi Suzanne: I'm new too but I have to admit you have some of very symptoms, and the doctors are somewhat stymed. In Virginia, the docs gave me pain pills without delving into the problem at hand. I have now been in NC 2yrs now and it seems this bunch are a bit stymed as well. I think one test came back with like 80% of one thing and different percentages. One came back for Lupus...& I really don't want that or the MS that they think I have. Sorry can't help you more. Debbie
Eveningsun, I guess one good thing is that I live in MD and the Neurologist I'm going to see is affiliated with Anne Arundel Medical Center and Johns Hopkins Hospital (2 excellent medical systems). I'm hoping for a thorough examination and someone that actually LISTENS and CARES!! Not just someone that is going to prescribe me pain pills and anti-virals and send me on my way (like most doctors around here do)!!
I really hope I get an answer soon and I hope you do as well.
I have experienced many of the same sx - and was dx with MS quickly - and then second opinion MS neuro wasn't so sure it's MS.
Now I am gray area patient - may be mild MS - BUT there were many times throughout the past several years of seeing docs - that I too felt I was crazy -
I have a wonderful internist who told me that I am def NOT crazy - and one of the hardest things for any patient - is not knowing what is wrong with them - THAT kind of drives you crazy.....
Hang in there - and let your docs help you get to the bottom of whatever is going on . Reality is that even some of the best docs don't know what's wrong with some of us - and sometimes it takes time and patience - But you are right - you need a doc you trust , who listens and who understands all that you are feeling during this difficult time.
You definitely need more information for a diagnosis, but I want to make sure to mention that a negative blood test for Lyme Disease does not exclude it. While you could have an autoimmune disorder or other infection, your symptoms are consistent with Lyme. Lyme is also good at causing anxiety and neuropsychiatric symptoms leading patients to truly wonder if they are going crazy.
You'll need to get tested at IGeneX, a specialty lab that finds cases other labs miss. There is a doc in MD (LymeMD) that treats a lot of Lyme Disease and he writes a blog about it. In it he tells a few stories about some Lyme patients' experiences at JH. They are not good stories. It is is an excellent medical center, but the ID department there is particularly insistent that negative Lyme tests are always accurate and a short course of abx always cures it. (I tested false negative twice, and I am still not cured after 6 months of abx.)
You will need to find an LLMD, a Lyme Literate Medical Doctor (assoc. with ILADS) as soon as possible to get checked out. If you do indeed have Lyme, you already have neuro symptoms, and you don't want it to get any more entrenched than it already is. Also, LLMDs know to look for certain common infections that ticks also carry that come along for the ride and can make you even sicker (such as Babesia or Bartonella or Ehrlichiosis).
I recommend you follow up with a neuro, but also go see an LLMD. That's what I did when my diagnosis wasn't clear and yet I continued to deteriorate. You are welcome to come post on the Lyme forum for additional thoughts or for more information.
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