New to this board-very concerned-questions

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Regular Member

Date Joined Mar 2014
Total Posts : 101
   Posted 12/16/2014 11:47 AM (GMT -6)   
I was diagnosed with Lyme in 3/14. Been treating pretty aggressively. Some of the "lingering" symptoms were
dizziness (more so balance issues/like feeling drunk walking on a boat) and a right heavy shin, pretty much all neuro symptoms along with newly acquired high blood pressure and heart palps.

Throughout treatment I did have some really good days and felt hopeful. I was running 4-5 miles a day in the summer, something I never thought I would be able to do.

about two weeks or so ago, I got a new scary symptom. Like an extreme "wave" of weakness in my legs. When I tried to walk, it almost took my breath away, it wasn't constant, but when the "wave" came, it was horrifying. I had to use a cane for a few days. The dizziness also seemed to intensify throughout all of this.

Fearful of stroke, I went to the ER. Everything checked out okay (labs, chest xray, heart). That feeling seemed to go away and I returned to the "normal" symptoms of dizziness and heavy leg. I was off of my meds for the week during which I got that leg weakness, so the ER dr attributed this possibly a medication vacation, or a lyme "flare."

Knowing in my gut, that something else is going on, I made an apt with my PCP. I will be getting an MRI on my brain, spine and lumbar this Thursday. My pcp is stumped, because when I walk I have these symptoms...but believe it or not, I can actually run on my treadmill every day, even throughout the "flare" I had. So when I run, I don't have these symptoms. Nevertheless, my symptoms are pretty textybook for MS I'm told, along with some vision issues I've been having as well.

I will admit I have a very strong fear of an MS diagnosis, because I work in home care, and a lot of our clients have extreme cases of MS. I know everyone is different, but this is my reference, and causes me a lot of anxiety.

Because of my extreme anxiety, my PCP (bless her heart) wants me to return to her office to discuss the MRI findings, and discuss nothing on the phone. That way, I can ask her questions if needed, and we'll figure out what the next step is together.

So, just to prepare myself, my questions are:

1). Is it "Worse" if you have more detected lesions, or, is it all about where the lesions are located?
2). Are the injections the preferred method for treatment, (I know everyone is different) but from what I read on this board, it seems like most get the injections versus oral.
3). Once diagnosed, and prescribed a protocol, is relief of some of the symptoms imminent? Or does it take a long time of med usage to get that relief? Are various meds used until relief is realized?

Thanks all, I really appreciate your feedback.

Bad Mojo
Regular Member

Date Joined Aug 2010
Total Posts : 70
   Posted 12/16/2014 1:14 PM (GMT -6)   

I will tell you what I know personally. But as you know, MS affects everyone differently and there may be dissenting opinions, even on this board.

When I got my first MRI, I had over 40 lesions. At that time I was in the military and I was in excellent physical and mental shape. The military let me stay in, even though I was diagnosed with MS (because I was in such great shape). All of my relapses have been atypical, save one. I completely recovered from all my relapses within two days, except for one I had in March 2011. That relapse was caused by a large lesion on my brainstem (a bad place to get one because so many nerves bottleneck there). Anyway, that relapse caused many of the more common symptoms such as extreme dizziness, vision problems, numbness, and neuralgia. And although I did get slightly better, I still have all those symptoms today. It was only after that episode that the AF medically retired me.

So long story short, it does not matter how many lesions you have--it is all about location. And from what I gathered from most other MS patients, symptoms usually go away within a couple months--but it can be very quick--as my first half dozen or so flares were completely resolved within two days. Some patients get relief from their symptoms by getting steroid injections but I've tried it on three occasions and it did absolutely nothing for me.

As far as meds, most people take injections because that was all that was offered for a long time. The orals have not been out for that long. I take Tysabri--an infusion every 28 days. I like it because I only have to deal with it about once per month.

Good luck and keep your chin up. I know a lot of people that have MS and lead perfectly normal lives. If you are diagnosed, it is best to start treating right away. The fewer relapses you have, the better.

Regular Member

Date Joined Mar 2014
Total Posts : 101
   Posted 12/16/2014 1:28 PM (GMT -6)   
Thanks Bad Mojo, that helps a lot!

Forum Moderator

Date Joined Jan 2007
Total Posts : 3571
   Posted 12/16/2014 2:29 PM (GMT -6)   

You've gotten some great info from Mojo. For me, MS treatments didn't change how I've felt. The meds seem to have slowed down the progression for me.

You may want to post in the LYME board. You could be experiencing neurological LYME symptoms. You might find their information and experiences helpful.

An MS diagnosis can take a long time to get, especially since you have a current diagnosis of LYME. Lyme could explain your symptoms. Doctors are hesitant to diagnose MS when there is another disease diagnosis that could explain the symptoms. That being said, I am glad to hear that you are getting an MRI. That information will really help!

Hang in there!
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Veteran Member

Date Joined Sep 2014
Total Posts : 534
   Posted 12/17/2014 3:16 PM (GMT -6)   
Because you have not been diagnose you probably have not been offered the meds. Dr. Swank, Dr. Wahls and Roger McDougall have advice on diet which help some people. Roger McDougall's story is very inspiring.
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