awieleba

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Loriliz

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Just curious...did you ever get the results of your biopsy?
 

awieleba

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HI,

not yet. I go to my neuro on the 27th. I am VERY nervous! one week from today. I am afraid they will say denervation, And I will pass out!

I will post that night, if I am in shape.

I am also going back to my rheumy at the request of my neuro to have bloodwrk repeated. I made the appt just to appease my neuro and then I will bring the report with me on the 27th and show her once again that my rheumy has ruled out mixed connective disease.

thanks

april
 

rose

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this is from Happy's post, didn't want to hijack :)

Hi Rose,

Thanks for sharing, you are always so open and caring. In regards to you progressing. Do you think that you had this for awhile, when you were being treated for sojorns? Meaning that maybe your progression has been slow if you have had this for years and will continue to be.

My twitching is alittle like yours. When I lay in bed and my legs are against each other or the bed, I feel them firing off. I have seen only a few times of movement. When I sit outside with kids, I am always lookimg at my legs and dont see constant movement. I think that is the one thing that keeps me going.

I do agree about weakness first. I feel your weak when you cant do the things you use to and I cant. My docter says it is because I have not used my muscle and they are out of shape. I think that is lame. I have periods in my life where I have been sick and not worked out for extended periods of time. When I went to work out, I could do it but maybe not finish. WHen I try now, I cant even go 5 minutes. IN my kitchen I noticed it too, I use the same big pans I always have ( I love cooking and having a glass of wine) and I have noticed the pans seem to be heavy like my wrist is gonna give out or I have to use 2 hands.

anyway, sorry to ramble.

best wishes to us all! Happy~~~~over the next 2 weeks just over focus on your kids, that helps me.

apirl

April, I agree that some of what is going on with you seems similar to me. About the weakness, the big pans in the kitchen is an excellent example. I used to do a lot of cooking, but that changed just due to my kids all being on their own now. I just don't handle them on a day to day basis. Just yesterday I was making salad for Don and me, and had sautéed some steak to put on top, and found I couldn't hold the pan (as in at all!) over the salad bowl to slide the meat out. Its that kind of thing, unexpected new limitations, and I feel like I've been blindsided. I've not really ever tried to test my strength, probably as so much of the medical focus with me has been on my throat and mouth. I haven't really paid attention to it.

You're correct that when we see a doctor and they try to test our strength, they don't really have an optimal way to judge how strong we are compared to how strong we have been. They do know what would be in a normal range though.

I honestly don't know when I first started getting sick. Wright and I have corresponded about this, (me trying to reason that maybe I'm not bulbar onset). I was treated for Sjögren's for about a year. I did/do not make the antibodies. I only have dry eye and dry mouth, and salivary gland biopsy's only show minor focal inflammation that could be found in anyone if enough samples were taken. The rheumatologist down at Hopkins explained that to me. He said they do biopsy's to cadavers and find some inflammation in people that had no symptoms. So, whether my dry problems are due to cranial nerves, or whether its a milder form of autoimmune, no one seems to be able to determine.

The onset for me was insidious, everything that has been affected so far has been so gradual that I can't pin down an exact time. I remember time frames, when people first started remarking about my voice, etc. (which was about 22 months ago now) When I went for that modified swallow test a few months ago, one of the big wake-up calls was that it isn't normal to have a good bit of food left in ones mouth after swallowing. I'd gotten so used to it that I wasn't even thinking about how it didn't use to happen. During the test, even before we got to the stage where I had to eat some cookie, I was aware that all of the barium I was supposed to swallow wasn't going down, and it was like I was trying really hard because it was a test, trying to do it right. I could feel the liquid pooling under my tongue as I swallowed, and really, that was the very first time I consciously realized that liquids and food were not moving down like they were supposed to. I knew I choked sometimes, and knew that occasionally things tried to go up my nose, but never thought about that part.

I think though, that your age is in your favor, and that you had such a sudden onset. However, from what you write here, you're still seeing a progression, and whatever it is that is causing it really needs to be identified. Its reassuring that you live where the doctors you need are accessible to you. I'm really hoping that the biopsy comes back with something definitive .

It seems that even though your symptoms aren't identical, you, Crystal and Sammantha have much in common, and each of you are daily in my heart. I am thankful that if I have to be sick, that it is now, after my kids are grown.

Let us know when that biopsy gets back!
 

awieleba

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Rose,

Once again, you are such a calming force! You are right about the symptoms coming on, they seem slow to me but really, I was very active last june/july. It is so hard to tell because of the pregnancy and colon infection.

I have to tell you Rose that I had a funny dream about you. I have always had very vivid dreams about anything and everything that I see or do in a day. Well, after seeing your photo's on here, I had a dream that I came to NJ to see you. In the dream, I brought my "spriited" son. We came in and you had all these antique's and my son was crashing into them and breaking everything! Them I took him into your bathroom for a time out (which in the dream looked like a palace) and he pooped all over the room. In the dream I was horrifed! It was sooo funny! But the best part was that I felt like I met you. It would be so nice if we all really could go our and have a drink and hug!

Anyway, it was funny.

talk to you soon....

april
 

brendapals

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April,
Great story about your dream. Maybe you can find a way that we could all meet at some point- I realize we are all over the place, but you never know, it could happen!

blessings to all,
Keep the faith,
brenda
 

awieleba

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Brenda, Girl~~you are anther positve force!

It would be great to all see each other, and your right. Stranger things have happen, we are all here on this website~~~never would of thought that!

blessings!

April
 

brendapals

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April,

You are too funny! I have to stay positive-trying to keep up with everyone on here is like trying to keep up the laundry!

It's like raking leaves in the wind! hahahahah

(thought you'd like another one of my nut cases!)

hugs to all,
brenda
 

awieleba

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Too funny and it is true!

I just feel soooo COOL that my name is a topic/thread. (thanks loriliz) I am going to try to keep this one going as long as roberts! (planning guy). I want to stay on the "in crowd"!

april~~~~help me stay popular!
 

happy

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I want to be a part of helping April stay popular! :mrgreen:

Looks like we are going to be about a week of each other with a diagnosed. I will be praying for you. BTW I do not see anyreason why those that wish can't put up a few hundred dollars to meet somewhere? After all, when in life do you make such great friends, who basically know all about you in such a short time? Pick a place I'll come!

Happy
 

awieleba

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I feel like ferris bueller!
 

brendapals

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That sounds like big fun! I will try to find a map this weekend, and try to find all of our towns and put some push pins on the towns-maybe that would work?

later guys,
brenda
 

rose

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Rose,

Once again, you are such a calming force! You are right about the symptoms coming on, they seem slow to me but really, I was very active last june/july. It is so hard to tell because of the pregnancy and colon infection.

I have to tell you Rose that I had a funny dream about you. I have always had very vivid dreams about anything and everything that I see or do in a day. Well, after seeing your photo's on here, I had a dream that I came to NJ to see you. In the dream, I brought my "spriited" son. We came in and you had all these antique's and my son was crashing into them and breaking everything! Them I took him into your bathroom for a time out (which in the dream looked like a palace) and he pooped all over the room. In the dream I was horrifed! It was sooo funny! But the best part was that I felt like I met you. It would be so nice if we all really could go our and have a drink and hug!

Anyway, it was funny.

talk to you soon....

april

How funny! You're welcome to come here any time you like with your spirited son :) I only wish the bathroom looked like a palace. Recently, after reading a thread on this forum about Toto washlets, I looked them up online. It was like WOW! I told Don I want one now, not after I need it! I'm glad I was able to encourage you a bit. BTW, I added some photos of my kids back when they were little to the photo album. Take care, (got to get to bed!)
 

lovelily

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Hi April....

I will help keep your thread going. :) Please don't faint if your read or hear the words, 'denervation'. I have a whole biopsy about it, and then the doctor spoke about 'collateral sprouting'....that's when I fainted....LOL!

He assured me this was a 'good' thing to have happening in my body. Alrighty...easy for him to say, he's not the one popping anxiety pills in the evening.

take care
lovelily
 

awieleba

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HI lovelily,

what is 'collateral sprouting'? I should know before I go and hear it. Sounds to close to 'collateral damage' for me. LIke there is war going on in my muscle.....but then agian, there is!

It is strange that you have 2 different readings from your arm and leg. I asked for one in arm, and they made it sound like it did not matter where the piece was from that it would show no matter where it was taken. IN your case not true, huh? It is all sooooo very complex.

I am counting down the days and I have a busy weekend planned to help pass the time. I want to aske her about spinal tab, checking lymes again (I had a strange bit while pregnant and got tested within 2 weeks and I read that it could of been to soon), MG antibodies, etc. All she has really checked in the blood is immune system disorders and muscle enzymes. All fine. Expect liver, had a problem with that at end of pregnancy. Blah, blah, blah......

Take care all.

april
 

lovelily

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Hi April....Wright will do a better job at an explanation, but I will try. When the nerves begin to die off, other nerves come along like little branches off the main shoot, to compensate for the damage.

In neuromuscular diseases this goes on until the nerves die off completely....I think? Anyone jump in with a better way to explain this.

take care
lovelily
 
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