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.

Well... there are days! The puffy will come to me for no reason, it seems!

I've had 3 days of NO swelling in my hands...which is very unusual for me lately. I didn't put the magnesium lotion on them
yesterday, and today they are starting to puff up.

The Morton's epsom lotion really does work for swelling for me. I will put some on with breakfast today. I use it on my hands and left foot mostly. (I try to keep my left foot elevated as much as possible too).

I find it really difficult to manage this. But without that evil drug in the mix, I am sooooo much better.

I only use 25mg of atenolol for my blood pressure, and my levothyroxine, now. No other RX drugs daily. Lasix very infrequently with severe swelling, and 1/2 tramadol at night if pain is terrible. (maybe once or twice a month).

I am trialing the new Bayer advanced aspirin 500mg. It has a new rapid releasing dosage form, to protect the stomach, and one of those a day, seems to help too. I've always used AlkaSeltzer, my whole life for intermittent pain, (not every day) because aspirin in solution is rapidly absorbed and not a big risk for the stomach bleeding. I get more relief from aspirin than from other NAIDs for some reason.

Most of my swelling is GI located, still.

Let me know what the immunologist says. I am waiting for the drug induced lupus to go down, to see exactly what it contributed to the angioedema. I'd rather see the doctor after our summer trip... that is not a good time to start a new treatment. After 66 yrs, I am pretty used to this after all! The lupus rash on my arms is fading away, but slowly. I am using it as a marker of sorts.

Woke up totally puffed up again. Too the predinsone and am less swollen. Phew!

mrsD - I'm going to have to get to Wal-Mart and get that lotion. I soaked my hands in Epsom salt and that seemed to help. I am not back to muscle spasms and swollen tendons along the top of my forearm on my left arm. There's a nice knot in there as well. I massaged some of it out this morning and it did help as I'm able to move my wrist now with little pain. Do your muscles get like that with your angioedema?

Yes, I have had alot of muscle tension/knotting. In fact I went to a chiropractor who was known in the medical community very well and all the doctors go to her! This was for my right knee years ago. (it was swollen up twice its size)... She adjusted it...and that adjustment worked, and slowly it got better. SLOWLY. I also had a steroid injection in it after an MRI. The ortho could not get fluid out of it when the injection was done...and he was surprised. I guess it was angioedema swelling and not "water on the knee" etc.

This chiro said I had the hardest muscles of anyone she has ever seen (20yrs). Now I think it is the angio. My abdomen when it swells is hard like a drum too. I am a large woman and hard as a rock? The only softness I have are "my girls"...if you get my drift?

This magnesium lotion is really wonderful. My fingers are back down BTW.(my wedding ring is my index of swelling). Don't lather it on, as the magnesium will get absorbed some. But just a dollop here and there, is more than enough. For $5.95 it is a real deal IMO.

All my life now that I think back, I've had strange reactions from doctors, radiologists, chiros. dentists... After my C-section when my son was born was the most dramatic. All the doctors who came to visit (I had 3 specialists because my blood pressure was so high) all had to examine me AGAIN... esp my neck which was hugely swollen, (and puzzled all of them). I appeared more pregnant AFTER delivery than before. I only gained 25lb during the pregnancy too.

If you think back, and this is not easy BTW... you might find episodes of weird reactions to the dentist, OB, or invasive medical procedures. It has gotten so tiresome for me, I don't want and am afraid to ever see a doctor again!

I've also had some really extreme bug bite reactions. One was a black fly bite on my eyelid which landed me in the ER in Blue Hill Maine on a vacation! The whole side of my face was swollen including my eye shut. Bee stings ditto but not as extreme, and also mosquito bites which can get huge too.