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Avatar universal

Muscle twitches, muscle joint pain, headaches, internal vibrations

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". I'm currently awaiting a MRI of the C-Spine.

My current symptoms: muscle twitches all over (and I mean all over on occasion), joint pain and muscle pain that seems to come and go every 3-4 weeks, some tingling, sensation of bugs crawling in my skin (mostly my head), random itching all over that comes and goes (i notice when I start to up my sugar intake the itchiness 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), dizziness 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 also lose balance a lot. I haven't fell at all, but my knees buckle a lot. 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).

I just don't know what else to tell the doctors to look for. I feel so lost right now. I just never expected this to happen. Thanks in advance for any advice.
2 Responses
Avatar universal
You need to seriously look into Lyme disease!

Just because you tested negative for Lyme disease doesn't mean you don't have it! Lyme disease tests are only accurate 50 percent of the time. Trust me I know from personal experience because I had aweful symptoms very similar to yours and I suffered for months and saw like 20 doctors and had every test done known to man. They all said I was negative for Lyme disease.  Turns out in the end I had Lyme disease the whole time. And it was causing all my symptoms.

Lyme is very overlooked by doctors.  There is a great Lyme disease forum right here on MedHelp.  They are very helpful on there. I definitely think you should post there about your symptoms.  They can also help you find a doctor that can treat your Lyme disease.

If you have any questions feel free to ask!  Hang in there.
Avatar universal
Thank you so much for responding, Jjewelz...I almost broke into tears when I saw you had commented. I feel like I'm going nuts right now. John Hopkins told me to go back and get diagnosed by a doctor here before they would try and figure out what's wrong. My medical insurance runs out in two weeks, and I can't pay it...currently back at home with my mother who is struggling herself to make ends meet and was helping me out. I don't really have a choice but to try and work even though most of the time I don't feel up to it.

I'll post in the Lyme Forum. What I read about Lyme scares me a lot, but right now I'm scared not having any diagnosis. How are you getting through your Lyme?
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