I have been dealing with abnormal swelling for a few weeks now. The swelling got bad enough that my PCP sent me to the ER. I did not present as a normal angioedema patient, yet had lots of swelling throughout my body. They are treating it as angioedema and I started taking prednisone, Zantac, and antihistamines. At the ER the dr. mentioned that possibly this was an MS exacerbation. I blew it off as I've never heard of swelling as part of an exacerbation. It make sense that it could because our nerves control everything but I have never heard an MS patient discuss this at all.

I went to my PCP today for a follow up. She too mentioned it could be an MS exacerbation of some form and was glad to hear I see the neurologist tomorrow. We looked over the ER report and discussed that the ER physician mentioned this possibility as well.

I was discussing this with my mom. She was a nurse and actually took care of a patient with MS when she was doing home care. She agreed that it may be an exacerbation or a symptom of an exacerbation.

I understand the mechanisms and the physiology of muscle inflammation. It makes sense to me and I get it but again, I have never heard any MS patient talk about over all body swelling as part of their exacerbation (with the exception of when they take IVSM. I'm a big sweller when I have to do IVSM). So, my question, has anyone experienced this or heard of this as part of their exacerbation. I go to the neuro tomorrow and just want to have some concrete knowledge behind me before I go in.

Do you take Lyrica or Neurontin?? I took Lyrica for a few weeks a couple of years ago. The Lyrica made me get a lot of edema. It wasn't an allergic reaction, it was an unexplained edema tho. Stopped taking the Lyrica, and it went away.

I wish that was the case Erin. That would be an easy fix. I've been on gabapentin since 2003 and have not had any edema issues with it whatsoever. I know that is a common side effect too but I've tolerated it well.

My PCP and I reviewed all my medications and discussed any new foods I may have eaten in the past 4 to 6 weeks. Nothing has changed. I stick to a pretty strict diet due to digestive problems so I know it wasn't anything different that I ate. I vary things and rotate my diet but it's the same foods.

hope they can figure it out and get it taken care of.

I always hope there's a simple fix. Too bad there usually isn't one.

Me too, Erin. Me too. My reflexes were a little off too. She did say that it could be due to the swelling or I could really be having an MS exacerbation. I see the neuro tomorrow, an allergist/immunologist on Thursday, and a rheumy in July. Maybe between all of them they can figure this out. But, as often goes, each one will says it's another "specialty" area that they don't treat. My GI dr. and neurologist go back and forth on this with my swallowing issues.

The 'roids may be part of it???? I swelled up and turned into a bull elephant using dexamethasone before brain surgery a few years ago.

You mentioned prednisone - I was on that during my first pregnancy, and I puffed up well above my baby weight.

Lyn

Hi tk,

I have had edema in my feet (3 times) which was caused by exacerbations (neuro confirmed). Once the exacerbation resolved so did the edema.

Back from the neuro. He does not believe that the angioedema is from an MS exacerbation. He did mention that I do look like I am retaining a lot of water. (And I'm less swollen today than I have been in a few weeks.) He wants me to taper off gabapentin. I told him my concern about the severe nerve pain that I get due to the constant hug. He said if it gets bad we will try something else. So, I have my taper schedule for the gabapentin. Today my reflexes were slightly hyper. Funny how it changes from day to day. Welcome to the wonderful world of MS where everything is so unpredictable. I also had a little trouble on the finger to finger test. But all in all it was a good visit.

Next up, allergist/immunologist on Thursday and rheumy in July.

That's interesting. I have a feeling about that gabapentin too.

If you are responding to antihistamines, etc, that suggests an allergic reaction.

This study analysis suggest at 1800mg a day or more as a factor for the peripheral edema effects to start.

If this is your problem, you are a lucky gal, because you really don't want to have the bradykinin angioedema, as that is not easily treated.

I hope you are tapering off carefully? It is so difficult to have that MS in the mix... that has to cloud everything!

I did a bad thing this morning. I forgot to take the prednisone. I am now swollen up again. So, maybe the antihistamines aren't working and it was the steroids that was decreasing the swelling. UGH! I was so hopeful this morning too. Dang it all!

mrsD - I'm on 900 mg of gabapentin a day. The taper schedule is to take 600 mg a day for a week, then 300 mg a day for a week, then alternate days, then every other, etc. until I am weaned off. It'll take about a month to be fully off the gabapentin. Again, I see the allergist/immunologist on Thursday and will discuss the possibility of HAE vs. acquired angioedema, vs. allergies vs. something else.