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#1 | |||
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Grand Magnate
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Good news, Ewizabeth! "It is never normal to have high calcium levels in your blood. Over 98% of ALL people who have a blood test that shows too much calcium will have a parathyroid problem. ... it is (also) possible for a person to take too much vitamin D so that they absorb too much calcium from their diet and hold on to too much calcium in their kidneys... and their calcium goes high." http://www.parathyroid.com/high-calcium.htm Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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#2 | |||
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Elder
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Good news Wiz! I hope the rest of the testing goes well too! Keep us posted. RW makes some good points....
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Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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#3 | |||
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Grand Magnate
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I had my 4th infusion today; I am premedicating with .25mg of benadryl and 2 tylenol. I had another reaction and had to receive an iv of benadryl. This time I experienced lower back spasms, extremely bad headache, cold chills, shakes, and up and down pulse and blood pressure. I was also coughing alot.
symptoms for the most part started after infusion so I had a complete one. I am so frustrated and upset. I almost hit a car exiting the clinic parking garage. Neuro ordered bloodwork for liver (will have tomorrow)and discussed the melanoma issue with me (see dermatologist next week for mole scan). After reaction he said he wanted to talk to the drug manufacturers to see if they have any suggestions. I told him I want to continue on ty and he said, "we'll see." He did mention the possiblity of giving me an iv of benadryl prior to the infusion. I had no problem with 1st infusion, had chest pains and tightness and shortness of breath with second and no problems with 3rd (premedicated for first time). ![]() |
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#4 | |||
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Elder
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![]() I wonder if that might help you too? If you took it a couple of days before and after? Just a thought.
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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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"Thanks for this!" says: | barb02 (03-06-2008) |
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#5 | |||
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Elder
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I had my 10th infusion today and it went well.
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I have to have the darned stress test on Friday. ![]() Quote:
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After a few thousand dollars of testing to bill to the insurance company, we should get to the bottom of this. Or at least just confirm that I don't have stomach or esophagus cancer. ![]()
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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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"Thanks for this!" says: | Riverwild (03-06-2008), tovaxin_lab_rat (03-06-2008) |
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#6 | |||
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Magnate
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![]() ![]() No new lesions is such a GOOD thing! I will never forget how excited I was when I got my results back and there were no new lesions! I was starting to look like a constellation! Anything still enhancing w/contrast? I had another thought about the other stuff you are going through. How long have you been on antacids/proton pump inhibitors, etc? Do you have GERD? Any possibility of Barrett's Esophagus? ( I'm just throwing out suggestions here, because you have me trying to remember every darned thing I learned now! ![]() I hope that after they are finished turning you inside out and examining all your bits and parts that you get a simple answer with an easy solution! ![]() ![]() ![]() Maybe you need more wild blueberries! ![]()
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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"Thanks for this!" says: | ewizabeth (03-06-2008) |
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#7 | |||
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Elder
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You make a very good point. The interferons, and even Copaxone give us side effects. I used to think the same about Tysabri as Cherie, that we shouldn't need an antihistamine to be able to take it. But when I was on interferon treatments (both A & R) I needed massive amounts of naproxen, then anti-depressants, etc... And with Copaxone, my sleep quality suffered, not to mention the site reactions and skin dents. Dang these meds anyway. ![]() I feel more tired on Tysabri, but my physical strength has improved, and my bladder issues have all but disappeared. And, no new lesions! ![]() Quote:
![]() I suspect the Baclofen as well, could it be relaxing the esophagus sphincter too much, allowing acid reflux to occur? BTW, I'm currently slowly weaning myself off of it, going down about 5 mg each week. I hope that helps it too.
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Wiz Turn Left at the next election. . RRMS DX 01/28/03 Started Copaxone again on 12/09/09 |
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"Thanks for this!" says: | Riverwild (03-06-2008) |
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#8 | |||
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Elder
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As she said, if the person who answers the phone does not accommodate you with a list of centers in your area, ask for a supervisor. It is to their advantage, financially, to make sure you are set up with an infusion center as soon as possible. They work for YOU... ![]()
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Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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"Thanks for this!" says: | Riverwild (03-06-2008) |
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#9 | |||
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Grand Magnate
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Personally, I do not agree with even taking an antihistimine prior to injection. If our bodies are fighting any drug to this degree, I think it is a sure sign it's not agreeing with us.
Allergic reactions are not something to play around with. ![]() Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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#10 | |||
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Member
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Interesting point, Cherie - but then I think - lots of drugs have side effects - and sometimes the benefit of the med is worth the side effect. Sometimes it isn't. It's an individual choice. Also - interesting choice of words - about our bodies fighting the drug - right now, my body is fighting itself....or that is the current belief - MS is an auto-immune disease. My body is already at war...and is not even agreeing with itself! How can I expect it to agree with anything? ![]() Most drugs have side effects. For instance, anti-depressants cause dry mouth in some people or affect sex drive. Some people need iron supplements - but side effect is constipation, etc. There's a slew of examples, but I can't think of any at moment... ![]() Anyhow....a drug/medication is a chemical we are putting into our bodies.... that in itself isn't natural. Some people react and have side effects, some don't. But either way - the med is doing something to our systems. The interferon treatments give many people flu-like symptoms....that's the body reacting to it. Neurontin makes some people gain weight. etc. Chemotherapy does all sorts of bad stuff to people - but it's a major weapon in the fight against cancer. It's a personal choice - to weigh out costs and benefits, I guess. I think we all have our limits as to what we will put up with. I'm still waiting for my stuff to be approved by the Tys people. I hope to start next Friday - and the closer I get to it - the more afraid I get. It was once thing when the PML was the big warning...but now there's a lot more on the list....lots to think about... ~Keri ps/my favorite is when the list of side effects includes the actual problem you are taking the drug for - ie: sleeping pill bottle that says "may cause drowsiness" - uhhh....yeah! lol ![]() |
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