New symptom - scared

about two weeks ago, I started experiencing weird weakness in my lower legs. Almost felt like a "wave" of complete and utter weakness. I was at work when it first happened, and luckily it went away.

My LLMD had me on a "med vacation" during Thanksgiving week. My current protocol is Mepron, biaxin and artemisinin. I take these meds Monday thru Friday with sat and Sundays off.

By Thanksgiving, the weakness came back while having Thanksgiving dinner at my dad's and this time it didn't go away. I had to use my father's cane to continue to walk. Friday I was bed bound, hoping it would go away. The paralysis wave continued to intensify and by Saturday, I was having full blown panic attacks, scared to walk again, for fear of that feeling. I should say too that my most prominent symptoms since being diagnosed with Lyme and co was heavy leg and vertigo/dizziness. During my treatments, those symptoms did go away, and if they were there, it was only slight. I was back to running 4-5 miles a day. But this, I had never experienced ANYTHING as frightful as THIS, he paralysis in my legs. I had already been to the ER 3 times in the summer with extreme palpitations (everything checked out ok). So, off I went to the ER again. My biggest concern at that point was to rule out stroke/heart attack. All tests came out ok. They did not do an MRI, I guess they don't do this in the ER??? The ER doc, was surprisingly knowledgeable about lyme and co, and was very open to it. He felt it was either a reaction TO the Mepron or having been off of it for a full week.

I called my PCP to do a follow up. As of yesterday, I was able to walk without the weakness, first time in a week.

I see my doc today, so she can see what my next step is, and what tests to order. I did try to make an appointment with a neuro, but no one called me back. I'm sure she'll order the MRI.

I'm very scared for what this "could be." ALS, MS or worse.

Please send good vibes everyone.

Thanks,

Very interested to hear how your appt. goes today. Lucky you to have had such a positive experience in the ER—that is insanely rare. And I am incredibly impressed that you have been running 4-5 mi a day! WOW. I miss that soooo much. Very good to hear.

And so very sorry you have had these issues develop—as if you don't have enough on your plate already. It's good that you've ruled out a few mechanical problems. I hope you can get to the bottom of this—are you in touch w/ you LLMD about these episodes? They might be able to provide more context for your next steps, given the lyme & co.

I have not experienced paralysis but have OFTEN been plagued with heavy feet-in-concrete-blocks sensations. Arms, too. But I would guess, as you probably have, that your leg issues along with vertigo/dizziness might be a circulatory/heart issue.

Please let us know how things progress—

-p

My initial, major symptom, was when my leg developed a weak, floaty kind of feeling over the course of a weekend. I went to my GP on the Monday, and was admitted to hospital, where they did a CT scan and thought it was a stroke, and then an MRI which showed an area of inflammation on my brain . . . they treated this with IV steroids, which should have reduced the inflammation and made me better, but instead, my leg completely paralysed! Consultant couldn't understand why this had happened, but I now know that steroids can make Lyme disease symptoms much, much worse, so this was a big clue as to what was actually wrong with me. I still have slight weakness in that leg, and also have the constant dizziness. So I guess these things are all part of the whole Lyme disease saga . . . :-/. Hope you're feeling better today mischa - let us know how the appointment goes. Sending good wishes your way xx

I still get these episodes. Arms, legs, usually one at a time. Sometimes both arms. I'll be sitting at work and barely even be able to type. I have been awake at night and completely unable to walk.

I can't put any pattern with it. I've had normal MRI's, though, so I just chalk it up to Lyme. I used to panic about it being ALS or MS as well - so, believe me, you are not alone. I understand that feeling.

I also have tinnitus....in case that helps your lyme picture. Get that MRI and it will help alleviate some of the anxiety.