Erika - I hope your surgery went well and that you are healing.

Kelly - I hope your surgery goes well and you are healed and feeling better for your DS's wedding.

Judy - Keeping you in my prayers and praying for good results from your biopsy, that the injections help you, and the ablation goes well.

My legs have been a little weak this week as well as my arms. But that is just par to the MS ride. I've been very happy with the results I have gotten with taking the vitamin D. It was such a blessing to me and has made a big difference in how I feel.

My neuro-ophthalmology appt went well. Of course, by the time I finally got in to see him, my eye was behaving and was doing better. It takes so long to get in to a specialist and by the time you get in there, the issues have resolved.

Sorry that you are having ongoing Sx of weakness as well as other "reminders" of this dopey disease. Sheesh it sure is exhausting at times, isn't it? Glad that the vitamin therapy is helping though .

The surgery went well and I'm back home again; which is a much better place to recover.
Still having problems with heart function and some digestive stuff going on this week as well; so had some more tests done (blood work and ultra-sound). Apparently the stomach isn't emptying properly and still had food in it after 15 hours of fasting .
Thus we're still looking at lesion activity; possibly hypothalamus, pituitary or vagus nerve.

Has anyone heard of or know anything about 'Autonomic neuropathy'? I've been searching the internet and have found some stuff on it, but mostly the on-line info is related to diabetes. This is what the MDs are calling what is likely happening, so now just trying to figure out why (MS, TV myelitis and even the C word was mentioned) .

A bit more than just concerrned at this point, but not much can be done until a cause is figured out. Until then I'm on clear fluids and a diuretic medication (Spiro) to help get rid of acculmulating fluid in the abdomen. They did say to get up and move around to help the back heal, so that medication pretty much ensures I'll be doing that

On a lighter note, the sun is out here and it is the first true spring-ish day of the year. I'll be sitting out in it later once it warms up a bit to soak up a few rays, just enjoying the birds singing about spring in the air.

Wishing everyone a lovely weekend .

With love, Erika

I haven't been here for awhile. I've been busy dealing with the interaction of Porphyria and Polycythemia Vera. I went to Mayo again to have a shot of p32, radioactive phosphorus, which is lowering my platelets (they are now normal). I also went to Johns Hopkins and talked to the ultimate expert on Polycythemia Vera. As you all know, I am not sure whether my neuro symptoms are partly MS and partly Porphyria-caused, and I explained this in detail to a high school student who is thinking of becoming a doctor; I talked to him about it at the request of my pcp. Because Porph is a neuro disease in part or actually mostly, and some symptoms are the same as MS symptoms.
I am busy baby sitting on Wednesdays, my two grandsons ages 8 and 10, and it's always early to bed time after that workout. But my feet are hurting somewhat less since I had the p32. The wonderful specialist at Hopkins explained that the neuropathic numbness and tingling in my feet and ankles is, indeed peripheral neuropathy, while the pain is more likely Erythromelalgia, due to the small vessels in the toes and lower foot reacting (inflaming?) due to the blood changes of PV. Good to get that straight, as most doctors just look blank and say they don't know anything about this foot pain, or it isn't related to the primary diseases.
I lost a little weight by watching portions, and thus a little of my pot belly; I feel better that way, hope I can continue this.
My second visit to Hopkins was, like the first one, a thrill, because the facility and the city are so different than what I'm used to, so beautiful in many ways. The architecture of Baltimore I love--so varied, so old and dramatic. The weather in spring there is wonderful for this desert rat--we had a lovely rain which made the air humid, and my hotel had openable windows; to hear rain drops on the surrounding roofs, wonderful, like the old days in Seattle when I was a child. And I could walk further than usual because I descended 7000 feet to low altitude. I would like to go again just to see the interiors of museums. The oldest building at Hopkins is an art gallery as well as a medical place, and worth a look!
Love to all, Mariel

Nice to see you Mariel. Glad to hear you are feeling a bit better.

Hope you continue to improve, Muriel...
back from hawaii Lost two pounds while on vacation sitting on my rear end tanning and relaxing since my legs wouldn't let me do much more than that. Shared meals with DH and tried not to eat too many snacks (although we did go through a large bag of Maui potato chips-the best chips ever).

After two weeks, my legs finally loosened up and stopped spasming. Before that I was crying from the pain...I wonder if I was in a bit of a flare...couldn't exercise or even go for a lengthy walk due to the pain. So I guess if I cut down on my portions and sit in the sun I can lose weight

Debbie D, Losing weight is an unpredictable event, isn't it? Sometimes it comes naturally, sometimes not. Sometimes exercise helps, but with you, sitting in the sun helped. To think you lost weight while eating those Maui potato chips! I find cutting portions is the only way to do it, since I have to maintain some carbohydrates in my diet, can't go to a high protein low-carb diet.

I need a friggin beer.

I think that plant closed..