Posted 10/15/2018 1:35 PM (GMT -6)
Hi, I’m sorry I know these ‘could it be’ posts are probably frustrating. I just don’t know where I should turn for help at this point. I posted in the lyme forum because this could be lyme, or basically anything. I just don’t know where to look for help. I am hoping to narrow down what it ‘could be.’ My doctor seems very skeptical of lyme. I don’t know what is wrong with me and I’m scared. If you have time to read this and respond, your kindness is a blessing.
Copied from lyme post- 32 years, female. Completely boring medical history. No family history of anything. I have infrequent complex migraines, maybe 5 over last 15 years, with stroke like symptoms, aura. Also, I got ‘my first’ as far as I know, tick bite 3.5 weeks ago. At least that seems like when symptoms might have been triggered (10 days after bite)?
Way before tick bite- Mid August, awoke with bad neck pain, up where neck meets base of skull. Seems to dissipate through the day, and is bad upon waking and overnight. Feels better through the day. But not nonexistent. Didn’t really think anything of it. Continues to this day. Not sure if related. I can move my neck fine but there is noticeable pain when turning up and to each side.
2 weeks ago, awoke with following symptoms. Pulsatile tinnitus in left ear (subtle, do remember having this occasional throughout life.) felt slight numb sensation in ‘bottom’ of right arm (mostly ring and pinky finger, to elbow), right foot (mostly middle to pinky toe side but feels odd to walk on), and Lower half of right side of face . Have a history of right Side numbness with migraine, thought it might be one, but never progressed to one. Have had some headaches all over head though nothing bad enough to be unusual. After 4 days of this sensation, went to regular dr. My bp and heartrate were high. Told her about tick bite. Was Told I have anxiety, was sent for bloodwork, X-ray of neck. Asked to return in two weeks. (Follow up this Wednesday)
Got routine bloodwork & Lyme two days later, at LabCorp, came back all levels in normal range. All Lyme negative except igm p23 ab present. Technically a negative test result. Nurse called and said everything on bloodwork was fine, no Lyme, I only noticed the positive 23 when I viewed the results. X-ray also fine, possible muscle strain in neck.
Four days later ( last Wednesday ) could not get heart rate down, panicky, headache, felt a lot of one sided loss of sensation, (I am not in pain or weak on that side though), felt ever so slightly drawn to the right as I walk, and slightly clumsy, so I went to ER. Dr wanted to rule out stroke and ordered CT of head and neck with and without contrast and extensive ‘routine’ bloodwork, everything is clear and normal. ECG was unremarkable but pulse was elevated. I asked if any lesions were present, ER doc did not know, but said he imagines radiologist would note that on ct report. Sent home and told to follow up with infectious disease and also neurologist. Have to see pcp for those referrals.
Have had odd loss of sensation in right side every day since, but it seems to wax and wane as far as how numb it feels in each area throughout the day. A few times, I’ve thought, hey, I feel almost back to normal. But then it comes back a few hours later. Yesterday my left arm started feeling ‘odd’ too. Not the same as right side, but different than normal. My facial numbness seems to come every few days, right half of face, cheek area and ear most noticeable, and lasts an hour or so. That eye doesn’t seem affected but feels odd. When I smile, both sides are the same.
Every day I wake up wondering what will feel ‘wrong’ today. I don’t feel fatigue, or anything cognitively off, just this sensation thing. My family thinks my neck pain is pressing on a nerve. But I don’t think that explains one sided numbness and the numbness in my face?
I don’t know where to turn, I follow up with my dr in two days, she can make referral for next appointment either ID or neueokogist. Dr doesn’t seem to believe me, seems to think it’s just my anxiety because I had PPA last year.
I called my dr just before writing this to discuss possibly retesting lyme, and she said as my positive igm band could in theory indicate a new infection, there was no way a less than a month old lyme infection would cause neurological symptoms. That I never had any signs of infection (fever, muscle aches) in fact I have had no pain through any of this other than my neck. The lyme board thinks otherwise, but now I am left thinking ok so what is my next move?
So I guess I am wondering if my onset and symptoms sound like anything anyone here experienced, if ER could have seen lesions on a CT and what area is the brain would cause mostly right sided symptoms? Is there something I am missing or have that could rule out MS? Should I try to have my regular dr order an MRI prior to neurologist appointment which will likely take weeks to have? I am just so scared something is being missed and that it’s time sensitive.
Please, any advice or info is appreciated..