At the end of October I got a flu shot for the first time ever in my life. About 5 days later I developed a little muscle flutter and tingle in my right foot. Being that my mother's side is pretty diabetes heavy, and the fact I had been eating a lot of junk over the past month or so, I was worried, so I had them do diabetes testing. Over the course of a week, the twitch moved up my right leg and my leg began to have muscle twitches. The leg also began to feel a little weak--I would walk and my knee would sometimes give a little buckle. I then developed random muscle twitches everywhere. Then my other leg started feeling weak. I went to the ER, told them what was going on, they gave me motor tests, and tested my feet to see if I still had feeling. I was diagnosed as having leg cramps, which was not what was going on.
2 days later I went back to the ER. I was having crazy headaches, with weakness, chills, muscle twitches, random burning sensation alternating in both arms. They did more motor tests...and then the dude asked me about my flu shot, which I had totally forgot about. Then I remembered that all this started after the shot. He told me about some syndrome that people get from the shot, but my symptoms didn't match up because I still had motor skills, and usually it's a very quick progression. I ask for them to draw blood. They say "what for? we don't see anything that need us to check that in depth." 2 days later I go see the doctor again and tell her what's wrong. Get the same motor tests. Now in between these visits I had Googled bad reactions to flu shots and I read some things that matched up with what I was experiencing. So the motor tests thing was not really helping me. I'm like none of this started until after I got that shot...she told me that they didn't think it was due to the shot. I was pretty upset. Upset and scared, being that I was working overseas and the hospital was limited in the types of testing they could do. So I ended up coming back to the States to get diagnosed.
In addition to all that I said freaking me out, I had noticed physical changes. All my muscles were mushy (for lack of a better word) at rest. I also noticed dents in both my hips, like someone had taken a piece out of both sides. I could also see my veins all over my body more clearer than I had seen them before, and my skin felt really weird to touch, like it was too smooth. Also, about 3 weeks after the shot I wasn't able to eat anything and I wasn't going to the bathroom regularly. Every time I tried to eat something I would gag and get nauseous which ended up in me not eating too much of anything at all. This happened after I noticed the physical changes.
I come back home, and my PCP diagnoses me as being constipated and that everything else is from stress or me worrying. I dispute this and she makes me an appointment with a neurologist. I tell the neuro I'm concerned about CIDP, I end up getting MRI of the head, EMG, nerve conduction study, skin nerve biopsy, and stress testing, along with a ton of bloodwork done, including lyme (tested twice). Everything has come back negative with the exception of the skin biopsy, which came back "on the low side or normal". MRI of the C-Spine came back normal.
My current symptoms: muscle twitches that can happen anywhere, but usually my legs and it's not as frequent as when it first started out, joint pain and muscle pain that's random, some tingling, sensation of bugs crawling in my skin (mostly my head) and random itching all over that comes and goes (i notice when I start to up my sugar intake the itchiness comes back and bugs crawling feeling comes back), slow digestive tract (usually takes me 10-12 hours to pass something), crazy headaches that come and go (a low level headache is always present), slight dizziness (brain fog?) most of the time, congestion in my head. Stiff neck that comes and goes, sometime with creaking when I turn to look at something, internal tremors that feels like there is humming coming from somewhere inside of me, lately it's been coming from my torso, but i feel it in my head as well off and on. I haven't fell at all, but my knees buckle a lot...my balance is not what normal. I usually wear some type of knee support when I go out to the store or something because walking usually hurts my knees, and I was never that way before (I worked out and lifted weights regularly). One of my knees just feels wrong like something happened to it (thats where the majority of the spasms used to concentrate). My joints pop a LOT. My sleep is all off track..I usually don't get rest nowadays til like 6am...I have this need to move my legs a lot (which I've done since a kid but never to this extent). Bright lights annoy me a bit, and if I look at anything bright, the "imprint" seems to stay in my vision longer that it used to do when I was normal.
I just don't know what else to tell the doctors to look for. John Hopkins just passed on my neurologist's referral and told me to get a clearer diagnosis locally. I feel so lost right now. I just never expected this to happen. Thanks in advance for any advice.