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Does anyone have any insight?

Brain & Nervous System | Last Active: 1 day ago | Replies (13)

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@windyshores

So sorry you are going through this, and it is very possible that it not anything horrific. One suggestion: get a Kardia, a credit-card sized home EKG that links to a cell phone. You can check your palpitations with it and either have a record of arrhythmia for your MD, or be reassured that you don't have any.

Is Lyme disease a possibility? Testing for Lyme involves some controversies. Some doctors go by even one band on a Western Blot being "Lyme specific." And most do an Elisa first. See if you can have a Western Blot.

I have tried both meloxicam and gabapentin and had some side effects. Meloxicam gave me chest pressure bad enough that I started for the ER (sat in the parking lot!) and gabapentin can cause joint pain. So while you are dealing with your primary symptoms, make sure side effects aren't contributing. That is something I deal with a lot.

In 2001 I woke with my arms and legs on fire. I never actually discovered the cause. My EMG was normal. I did test positive for Lyme and had antibiotics. Along the way I had a lupus diagnosis with very high ANA but am doubtful. I also have high antibodies for scleroderma. I think a rheumatologist might be added to neuro for you.

How is your neck? Any whiplash? An MRI of neck as well as brain might be in order. Is sciatica a [possibility? Pain can migrate and change. A PT can help diagnose pain as well as treat it.

Giving up dairy and several other foods helped a little with whatever inflammation might be going on. I started tai chi. I have had Klonopin on hand for years but take 1/4 of the lowest dose, at most twice/week, so very sparingly. That is the only med I can tolerate for my muscle spasms and neuro sensations. PT massage helps and PT's are often expert with vertigo.

You might benefit as well from a functional and integrative medicine doctor who looks at the whole picture. It is good news that your heart seems okay. A functional medicine doctor can kind of guide things in my experience, but I avoid some of the testing and supplements due to expense.

My daughter had a lot of symptoms at your age. As her mom, trying to find answers, I felt like we were in a field of tall weeds that we couldn't see out of. It did turn out that she had several things going on, not one, and over time they have been handled. Her college years were tough but she is now 34 and has been relatively healthy- with the right meds- for 12 years. I am doing well too, but I am older and accept some weird stuff! Young people like you should be well!

I have been reading "The Lady's Handbook for her Mysterious Illness by Sarah Ramey. Maybe you can get a copy. You will relate. There are other books on invisible illness, some with humor. And hope your parent comes around to support. I get the desire for a diagnosis. You want one that gets you taken seriously but not so serious that it is a worrying problem!

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Replies to "So sorry you are going through this, and it is very possible that it not anything..."

I actually did a blood test to check my B12 levels and for lyme disease, and when I called the ER later that night they said my B12 was within normal limits, but that the lyme disease results wouldn't be in until the next day. This was a few days ago, so in the morning I'm going to call back to get my results on that but I really doubt I have lyme disease since it's winter and I don't live in a very woodsy area.

And now that you mention it, I started having worse chest pressure after taking the meloxicam. Chest pressure was one of my original symptoms to begin with, but after taking the meloxicam for the past 2 days, the chest pressure won't go away. Usually it would only last for a few minutes but I've been having it all day. I'm going to mention this to my doctor.

It's hard to describe how my neck feels. To me, if I feel my neck, the right side feels a little more firm than the left, and that's also the side where I feel like there's something in my throat when I sometimes swallow (that globus sensation.) I guess sciatica is a possibility because my mom experiences it, but she is also almost 50 so it makes sense that she might have that kind of pain, but I'm so young and have been healthy my whole life. The only thing that I can think of that wasn't healthy about me is that I've struggled to lose weight my whole life, but otherwise, I've been fine.

I definitely might check out a rhuematologist. I still have yet to even schedule the MRI and EEG that my neuro wants me to do. The waiting game is what's killing me. At the end of the day, I'll deal with whatever I have, I just need to KNOW what it is.