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Undxed Lyme? Help!
Jun 16, 2008
When symptoms started, sorry so long. Any advice would be greatly appreciated.
March 04’
“Slapped Face” episodes begin. Starts with eye pain, left or right. Hurts to move my eye or blink. Keeping them closed is the only option, if possible. I get a massive migraine & feel like I am going to die. Then my face hurts on the side that my eye hurts. It only covers a quarter or so of my face. cold is like ice. Heat is like fire. Like I have been slapped & the sensation stayed. This feeling lasts for a few days even though the eye pain only last 12 or so hours with the migraine. This feeling has moved down to my shoulder & lower back. This happens every 3-6 months. I have not had a bad episode since New Years Day 06’.
May 05’
I took a fall in the shower. I hit the right side of my head on the marble wall & the lower part of my spine on the side of the tub. Within a few days I start having migraines & a bobble head type feeling. Saw the chiropractor & found out that I had a few disks out of place. I started treatment & got better within a few months.
April 06’
Left hip pain started. Like I step a funny way & it pops. When it pops, I have a shooting pain from my groin to my knee that stops me in my tracks. This only lasts 30 seconds or so. Then the joint hurts for up to 2 weeks. I can not lay flat on my back with both legs laying down. I have to squeeze my butt cheeks together so my hip pops & allows my left leg to lay flat. Ortho said that’s it’s arthritis & thinks I should move it more. (At the time I was running a home day care with 8+ children most days, not to mention 3 that don’t leave at the end of the day.)
At this time I also came down with a weird infection thing. My lymph nodes swelled up so big that it hurt to move me neck. I felt like I had the flu with out the sinus stuff. I run a low grade fever but not always. No doc has ever figured out what this is. My MVR was also dxed by an echo.
May 06’
I began having issues with my eyes. I call it “googly eyes” because I feel like my eyes are doing their own thing. No rhyme or reason for when this happens. I could be fully awake or totally exhausted. Happens for days at a time then stops for days at a time. When I am in the shower, I close my eyes as tight as possible & water & soap still get in. Like my eyes are not sealing. Sometimes they feel like they are letting air out.
April 07’
3 middle toes on left foot have been going to sleep for a while now. Left leg feels heavy when I am working out. Still having “slapped face.” Figuring all this neuro stuff may be vitamin def related, I bring it up to my GI doc. He refers me to a neuro to be evaluated for neuropathy & MS.
The neuro takes my history. I tell her about the chronic headaches I have had for years, “slapped face” & “googly eyes.“ She uses a tuning fork looking thing on my feet. She also tests my reflexes. Tells me that I need an EMG & MRI to test for neuropathy & MS.
May 07’
EMG & MRI results are in. Normal for both. Neuro wants me to take 2 different meds for the headaches. I pass on both.
I see a neurological psychiatrist because I think I am going crazy. If I am “normal” then I must be imagining these weird symptoms. She prescribes Cymbalta. Best thing ever. Cymbalta took away my chronic everyday headaches.
July 07’
I began having right shoulder pain. It would start with a burn. Not hot or red on the outside. It just felt very hot on the inside. It quickly moved to my elbow & wrist. My arm would be nearly useless. Very heavy, weak. I feel so fatigued when this is going on. It takes so much effort to use my arm. My left wrist will also hurt sometimes. My arm bones hurt, not just my joints. This will happen for days at a time then just go away. I also feel like my whole body is swollen when I feel this way.
I also start to have a weird shocking feeling from my left thumb to the bottom of my left jaw. 1st I would feel the shock in my thumb, then my jaw. The feeling would not travel from thumb to jaw, just throb between the 2.
Oct 07’
My hip started killing me. I could not get any relief. I made an app. with a new Ortho because my insurance had changed. After x-rays he sends me for an MRI. He thinks that what he sees my be a possible birth defect in my lower spine. And that possibly due to the birth defect in my spine, my femoral head is flat instead of round. That due to the flattening, I have chronic bursitis. He prescribes 200mg Celebrex twice a day & a back brace. The back brace causes my knees to hurt terribly. He also tells me that I probably have Morton’s Neuroma(s) in my left foot & this is why my 3 middle toes go numb. He prescribes inserts for my shoes.
Dec 07’
My left leg began to hurt. It started with electric like shocks on the side of my calve. Sometimes I have the shocks in my left thigh. I thought nothing of is until my right leg started doing the same thing. I am so uncomfortable. I am having trouble sleeping at night. I started taking Lortabs & Percocets with no pain relief at all.
Saw my 1st rheumatologist. Told her about everything. She asks me when I saw the neuro last & if anyone in my family has Lupus. She sends me for a ton of blood work & checks me for tender points. Tells me to wear better shoes & exercise more. I had to stop working 6 days a week at my mom’s restaurant because my legs were hurting me so bad. I went to 3 days. I feel like she assumed that since I am a little over weight that I am lazy & inactive.
Jan 08’
I saw the rheumy to get results. She tells me that I am pre-Lupus & leaves it at that. She tells me that the pain in my shoulders is probably from my endo (yes, she’s crazy & I am never going back). She then tells me that I have mild arthritis & my legs would stop hurting if I were more active.
Feb 08’
I get a PCP. I need help with the pain. I am taking 400mg Celebrex & up to 8 Advil a day. She vows to get to the bottom of whatever this is that is causing me so much pain. She orders my records from the Ortho, Neuro, & Rheumy. PCP put me on Requip for the leg pain. It did not help at all.
March 08’
The 11th: My neck hurts, I am lethargic, my MVR is bothering me, my left eye is not googly but it is blurry, feels like someone is squeezing my left ribs.
14th: My heart would not stop bothering me. Around 2pm I started feeling really bad. My heart would not stop flip-flopping. I called the dr. & made an app. When I got to the school to pick up the girls, I could not breath good. No matter how hard I tried, I could not get a deep breath. My whole body got tingly. A friend had to drive me to my app. The dr. saw me right away. My blood pressure was super low. They gave me nitro & told me to go to the ER. I got better then had another heart episode. I was monitored for 7 hours. During this time I was given a CT & x-ray. The ER doc said that it looked neurological to him but I should still see a cardiologist.
18th: I see my PCP because I still feel horrible. No energy, lymph nodes swollen, feel like I have the flu. My left jaw line has electric shocks in it constantly. I am also having ticks, my head, arms & legs. She wants to do some kind of immuno test on me. She orders an echo & some other blood work.
April 08’
PCP says that I need iron. That my ferritin is low & probably why my legs hurt. My echo showed my MVR. She also tells me that the crazy rheumy wrote in my file that I have Fibro, which I do not have. My PCP feels like she did that because she does not know what is wrong & figures I will be happy with a label for what is wrong with me.
June 11, 08’
It has began again. My whole body is swollen. My lymph nodes are slightly swollen. Every bone & every joint hurt. Cracking & popping everywhere. I am so tired & weak but I can not sleep. A new thing is sharp pains in my middle back when I bend or stretch. I feel like a big whinning hypo but I shouldn’t have to live like this. No one should.
I had the ELISA done a year ago & it was negative. I know that I can't be dxed here but any help or advice would be so appreciated.
Jen





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