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". 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.
2 Responses
Avatar universal
Very sorry to hear you are going through all this -- you give a good history, which is something a worthy doc will use to your advantage.

One aspect in particular that caught my eye are your comments on the 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 not sure what marker was 'on the low side', but if it was a Lyme indicator, then definitely get yourself to a Lyme doc.

(Side note on medical politics:  Neurologists would, in a better world, be experts in dealing with Lyme disease (and any co-infections the 'Lyme' ticks often bring along), but unfortunately, neuros as a group tend to have a huge blind spot when it comes to Lyme -- they just don't get the concept, despite recent research and findings.)  

About medical tests and records:  If you have not already done so, start keeping copies of ALL your test results and put them in a binder to take with you to future appointments:  what is meaningless to some docs may be hugely important to others, and you are the best keeper of ALL the tests and so on, so they are all in one place.  Yes, dragging the binder to a doc's office is a hassle, but always get the binder back and take it home -- don't leave it at the doc's office.  You might need it again.  Tell whatever doc that s/he can make copies of whatever looks interesting, but that you will be taking the whole binder home with you.]

My Lyme doc was an immunologist by training, and it strikes me that a doc in that field may have a broader view of your situation than previous docs you have seen.  That said, a good Lyme doc can really be any kind of MD -- what is needed is an open mind and willingness to understand and not simply dismiss.

I just searched online for  -- LLMD Maryland -- and found quite a few leads, but you should also check (or have a friend check -- you've got enough on your plate) surrounding areas.

Also go to the ILADS website and access their physician referral function if you have not done so already.  There is no guarantee that the doc is the right one for you, so if the first one is a bad fit, go down the list till you find one that works for you.  (ILADS = International Lyme and Associated Diseases Society, a voluntary group for MDs who think outside the box when it come to Lyme and its co-infection.  There is no test to be an ILADS-member doc, and some of them are a bit fringe, I think, but it's because Lyme is a field still developing, hence the caution.  

You could also post a new message here:  "Need LLMD near [Gaithersburg MD]" or whatever applies to your location.  It sounds like you are doing all the right things -- the trick is getting the array of information in front of a doc who understand what s/he is looking at.

Above all:  Do Not Give Up.  Lyme is a nasty piece of work, but it can be beaten.  Let us know how we can help, and please stay in touch -- it's a good crew here that got me through Lyme some years back, and you're welcome here too.
1763947 tn?1334055319
They recently shut down a well known  LLMD in Rockville, MD, there are a few others that ILADS can help you with. There is a great guy in DC. Feel free to DM me if you want the name. I use to live in Northetn VA.
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