Hi,
Basically the things Violet said. I also went on a 14 day elimination diet. It was very strict. I added things back in slowly. I didn't think it made a big difference. I was very hopeful. I am allergic to shellfish and usually stay away from all fish, so I have not done the fish oil, although I have heard it really works.
Also another interesting development. I have an 18 year old daughter who has suddenly become very ill. All her joints have swollen, she running fevers in the pm, sleeping 15 hours a day and alot of other weird things. They gave us a dx of RA this week and are running tons of auto-immune tests. Its a long story, I'm very freaked, and I can't help but wondering if WE have something that will make sense of all these symptoms. I just wonder if something has caused the MAV. We won't know anything for another 10 days. Meanwhile she has come back home from college.
I think the fact that you are feeling better tells you that you are doing something right. Keep it up. You maybe standing at your counter instead of leaning on it in no time!!!!!
I just wanted to say that I am so sorry that your daughter is feeling ill and that she, you, and your whole family are coping with this new illness. I hope she feels better very, very soon! I don't know much about that illness, but I know it is very hard to have your children be sick. You are all in my thoughts!
It is so strange. We were all so healthy not so long ago. I have a hard time seeing her in so much pain. I feel like the drs are very concerned and doing everything they can.
We moved into a new house 6 months before I got this. Now her. I know it sounds crazy, but I wonder if our house is making us sick. We had it tested for everything before we moved in, but the timing is strange to me. I'm always looking for something to pin my MAV on. Vit D def, auto-immune, food allergy.....Maybe it just is what it is.
Thanks for your kind words. Hope you are doing well.
Sorry to hear your daughter is not feeling well. It sounds autoimmune to me. I am going to have a sed rate drawn and an ANA panel this week. Since we share so many symptoms and both have autoimmune issues maybe you might think of doing the same. It just wouldn't surprise me at all if that's what's going on. Keep us updated.
L4A,
My sed rate has been high throughout this ordeal. Also my CRP. I did have an ANA and was negative. When I was with my daughter at the rheumatologist she noted that my daughters ANA had been negative. She said "that doesn't matter, it can change at any time". She is running tons of auto-immune tests. I thought I would see how those come back and go from there. I did call my Dr on Fri and ask to have a B-12 done and also my Vit D rechecked. I just KNOW something is going on besides just MAV.
Today I woke up and my thumb was killing me. My husband asked what was wrong and I told him "Now my thumb hurts, but this time its my thumb on my other hand" His response "You don't do much, you probably have atrophy all over your body". That was very helpful.
Hope everyone has a great day. The weather is beautiful here, hopefully it is the same where you are.
Don't worry too much about your thumb. Maybe you slept on it wrong! I'm sure it will go away. We are so in tune with our bodies. That's good in a way, bad in a way.
L4A,
I went to a rheumatologist. They did and ANA and since it was neg...just ignored it. My Dr says the test doesn't tell you where the inflamation is. Thats when I went somewhere else to find out what I could do to help myself. Hinch, the diet and fish oil.
When my daughter saw this new rheumatologist they asked if anyone in the family had anything funky. I briefly metioned my thing. She thought that was very interesting. It has put the bug in me to see a new rheumatologist and have the auto-immune stuff looked at again. After she commented that things that were negative months ago could certainly be positive now. Have you thought that any of your MAV issues were related to auto-immune? I don't know that mine are, but I do think I have something going on, maybe in addition to the MAV. It would only make sense that inflamation is involved. It's a big puzzle.
I will say my symptoms have changed a little. I have more "shifting" then I used to. I keep thnking maybe its my brain getting Better.
Is the verapamil still helping you? Are you enjoying the grocery store?
I was referred to a Dr. Fuhrman who does everything via phone. Apparently an amazing doctor, very smart, very caring and tries to do everything before trying meds.
Has your daughter been tested for Human Parvo Virus B? It's a blood test. This is an auto-immune illness that can mimic RA. I was exposed to this virus when I worked at a rehab facility back in the '80's. It caused me to have VERY swollen joints with pain, and extreme fatigue (I was sleeping almost 20 hours per day). Initially, the doctor did not know to test me for this, but since another colleague also came down with the same symptoms, a doctor that was treating her knew to test for it, and when I found about that test, I requested it of my rheumatologist - that's how I found out that I had it.
Hope this helps.
Last edited by Wowwwweeee; 09-22-2008 at 08:59 AM.
Wow,
Thanks! Yes that is one of about 20 things they are looking at. How long does that last? Do you ever thing something like that started something like this?
Have you heard from me?
Hope you are having a good day. I have been very shaky today. Don't know why. I guess I never know why so today is no different.
For me, the Parvo symptoms were INTENSE for almost one year, and then I was left was residual problems of loose connective tissue between joints, painful swollen "joint flare ups", off and on fevers, and inflammed lining of my lungs for a few years. I was pretty sick for a long time. I missed months of work, and spent a lot of time resting because I was fatigued and in joint pain a lot. Currently, I just deal with joint pain on and off, but cannot tell if that is due to the exposure, or just me in general. I had to take a course of steroids twice to combat the joint pain and swelling - which was difficult.
I did hear from you - and shouted back right away. Nothing? I will try again - you try again also!
I get very shaky with the imbalance and head stuff; it's like being nervous without the adrenaline feeling.
I'm interested to read your insight in the post you referred CK to on your diagnosis. Is that on this forum somewhere? You and I share an awful lot of symptoms.
Yes, we do have a lot of symptoms in common, which is reassuring, but also the pits, I know. The post is an older one of mine, started when my user name was spelled a little differently(it used to be Wowwweee - just a few less letters!). It's called I Believe I Have My Diagnosis. I tried to be as detailed as MAV in that post as possible; I think a few have found it beneficial.
Thank you, I found it. It is very interesting. I see Dr. Hain again on Friday so I'll be anxious to talk to him again about all of this. Unfortunately I don't have much progress to report to him.
Do you have any autoimmune issues?
By the way--I shouted on excite! Thanks for your input.
Hi,
Hope you are doing ok. Just wanted to ask that you let us know how your visit goes on Friday. I will be anxious to know. I am going for a second opinion on Monday to a neuro-otogist. My sister knows him personally and told him about my deal(the little bit she knows) and he said he'd like to see me. If I can get some of my doubts off the table I know that it will really help me.
I wish you a great day tomarrow. Hopefully I'll talk with you soon.
I will definitely post about the visit. I went back and read Wowwweee's old post. It was VERY interesting. You saw that too?
I am so aggravated by these symptoms--the constant imbalance, the feeling that my feet don't know where they are in space, etc. It's awful. I of course am petrified to see the doc on Friday, as I keep waiting for him to tell me something really awful.
