becjo
New Member
You do not have a right to be a victim-Richard Harper
Posts: 44
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Post by becjo on Jul 5, 2009 11:52:48 GMT -5
Sorry I have been off for a while...with the holiday and dealing with my teenage daughter and the summer stuff, I have been busy and tired. I had fun in South Dakota, but ever since being back I have not been feeling well at all...stomach issues, fatigue, pain, and more. Plus, I had found a lump on my trachea area about a month and a half a go and it seems to be growing. Also, found out finally from my 24hr urnine collection in June that I had elevated magnesium levels (I had to call for the results), but the nurse said not to worry...okay-should I be??? On top of this, every time after I eat I feel like there is something stuck in my throat...it is getting more prevalent-this has been happening in the last month or so. My teeth have been hurting more in the last couple of months and getting loose-I have been having a hard time eating even...I went into my dentist last week to check and he found more loosened but not real bad at this point...he told me to keep doing my cleaning regime on my teeth and keep in touch if things get worse. Plus, I did not have any cavaties-at 40yrs old I still have no cavaties! At least something is going right!! Should I be concerned with the lump on my trachea area, the elevated magnesium level, and the feeling that something is in my throat after I eat? Advisement and suggestions are welcomed...I will be going to my rheumy apt on Tuesday this week and I will be putting these in my questions to talk to him about. Thanks for the help!!
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Post by sherion on Jul 5, 2009 19:19:58 GMT -5
Becjo, I'm sure if I got those results I would be concerned, too! Maybe it ISN'T anything to worry about but I would certainly tell the doc and see what he says. The lump ypu feel in the trachea could be why you have the feeling that your food is getting stuck. Congrats on no cavaties!!!! That's great! Hope the rheumy can help and at least ease your mind, possibly send you for testing. Keep us up to date after the appointment.
Sherion
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Post by Cubby on Jul 5, 2009 21:59:04 GMT -5
BECJO: Absolutely, you need to get to your doctor. Also sounds like you need to get a Endoscopy and Colonoscopy. Problems swallowing are GI problems, and your esophagus might be scarring. Also, the lump is nothing to mess with. Please get to a doc who will do tests on these issues.
Also, you need something to stop the progression of the disease. The loose teeth issue is a problem too.
Get to the doc and get these things FIXED!!! Really, sweetie, get on that phone Monday. If this was your car, or washing machine, you would be leaving voice mail messages tonight! You can't expect the mechanism to work properly, if you don't get it looked at when it is malfunctioning.
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Post by christine10 on Jul 7, 2009 12:54:58 GMT -5
Becjo; I have no idea of what is happening with your throat but have a very possible scenerio of what is happening with your teeth and calcium in the urine. Almost all of us have leaky gut caused by our typically bad North American diet added to an overstressed life style.We probably would not have gotten sick if there were no leakage to allow the micoplasma and too large food particles to enter our blood stream.With leaky gut come the bigger problem of mal-absorbtion and we are not getting enough vitamins and minerals.The brain and heart need a lot of minerals just to function so the body starts drawing the minerals from our bones.One usually does not realise there is a problem until teeth become lose or start to fracture and one gets osteoporosis.Have you had a bone scan,it is VERY important ? The only way to get control is to fix the leaky gut and take a lot of minerals,mostly zinc,magnesium,silica,selenium and calcium.You should go to the Roadback site www.rbfbb.org and use the "search" at the top of the page and look at the posts done by A Friend on our lack of Mg.If you don't know how to fix leaky gut just google Dr. Leo Gallant and leaky gut he is one of the best researchers on this topic
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becjo
New Member
You do not have a right to be a victim-Richard Harper
Posts: 44
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Post by becjo on Jul 7, 2009 15:59:05 GMT -5
I have IBS and have had it for a long time...but that might have been the start of my sd...my magnesium is slightly high and so I am trying to figure out a way to lower it somehow-I have not done enough research on it. The dentist said the reason my teeth are loosening was because of the sd is attacking the ligaments and making them thicken and of course the gums are thinning...but no cavaties and the teeth themselves are still strong. I went to my rheumy apt today and was told to call the kidney dr. and make an apt to go over the results, because my rheumy is not sure of course what the higher levels of magnesium mean. I am just really ticked off that that I had to call for the results of my urine test and there was no follow up apt made to go over the results like the doctor wanted...I am just mad!! The lump on my trachea area definitely is a concern for my rheumy and has put in a request for another endoscopy...I had one in Feb 09 and the only thing found was some damage from reflux and have been on 80mg of Protonix since. So now I am waiting for that phone call to schedule that...Plus, tomorrow I will be calling the kidney dr. to see when I can get in...it probably won't be till August...that is what the nurse said when I called for the results...what a pain. My CO2 is staying steady at 18.3 since Feb 09, it's low but steady, so there is no concern on this...should I be? I am scared and very ticked off-I do not want this disease to sneak up and kill me! "Surrender is not an option"!
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Post by Cubby on Jul 7, 2009 19:34:24 GMT -5
BECJO: Good luck, kid, and let us know how it is going. I am sure you told us this before, but what treatment do you do for the Scleroderma?
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becjo
New Member
You do not have a right to be a victim-Richard Harper
Posts: 44
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Post by becjo on Jul 7, 2009 20:38:11 GMT -5
No problem Cubby, I have been on the following since Feb 09: 2000mg-Cellcept 80mg-Protonix 5mg-Linisipril 10mg-Zyrtec 50mg-Amnitripyline 1 scoop of Questran Calcium with Vit. D-3x a week Omega 3-3x a week I have not increased my Cellcept dose at all, it was decided that we give it another couple of months to see if it does anymore to help soften my skin and slow down the disease a bit more. I have been feeling crappy so I did not want to increase the Cellcept anymore, until I find out what is going on with my throat. I will keep fighting the good fight...
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Post by Cubby on Jul 9, 2009 21:22:50 GMT -5
So, it looks like the primary treatment for the actual scleroderma is cellcept? I am so sorry you are not feeling well. Hang in there, I remember how awful it was. One day, you will be me telling everyone how well you are!
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