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Wise Elder
Member Since Oct 2004
Location: AZ
Posts: 8,663
19 |
#1
Doc went very well!! I explained all the symptoms I've been having and everything but the eye and the pain in my head is stress and steroids....not MS!!! She spent about an hour with me, and gave me a brief overview of the disease. Basically the brain lesions cause some part of the muscle coating of my nerves to deteriorate. The part of the body affected will recover but never 100%. I asked her about the definitive diagnosis and she said the MRI is the definitive. There's no question that it's MS, most likely relapsing and remitting, which just means that I'll never know when it'll flair up. She thinks the pain and weakness I've been experiencing is all due to the steroids and the stiffness in my neck is stress, so that should alleviate when I get off the steroids. My last day on those will be the 14th, so that's when I can start expecting to feel human. She knows of the neurologist I'm seeing and is excited that I'm seeing him. She says I'm doing everything I can do, I'm not going to be taking any meds as of yet, at least not prescribed by her. She says there's a lot of medications that have done wonders for MS, where as 15 years ago it was more, we'll just document your decline. There's a medication for fatigue associated with MS that is not a stimulant, so that's a good option, and lots of holistic treatments as well. She's awesome, I love her! So...now that I've seen her I think a lot of the stress with dissapate and that will help with some of the pain, and I'll keep on keepin on. She's very happy that I've got 13 months in the program, that that is probably one of the best things I've got goin for me.So, feeling much relief and encouragement!
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Most Legendary Elder
Member Since Jul 2003
Location: CA
Posts: 22,211
(SuperPoster!)
20 397 hugs
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#2
{{{{{{{{{{{{Rayna}}}}}}}}}}}}}}} You sound so upbeat!! I'm so happy for you!! All in all, the news isn't bad, is it?? Sure sounds to me like there's much room for hope and for more improvement on your physical pain!!
YEEEEEEEEEHAAAAAAAAAAAAAAAAAAAAAAAAWWW!! __________________ Psalm 119:105 Thy word is a lamp unto my feet, and a light unto my path. |
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Magnate
Member Since May 2005
Posts: 2,252
18 |
#3
wow!!!! you go girl!!!!!!! i am sooo happy that you had some news that will help relieve your stress..... i am pulling for you!
__________________ Live life passionately, love unconditionally. Hope for the best, laugh your heart out. Cry when you need to, learn from the past. And remember what is meant to be will find its way. |
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Wise Elder
Member Since Oct 2004
Location: AZ
Posts: 8,663
19 |
#4
Most definetly!! On the steroids for like 8 more days and then I should feel close to human!! It's such a relief that it's not a big flair up of MS that I'm experiencing, just side effects of medication and stress. Whoo hoo!!! I'm quite happy today!
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Grand Magnate
Managing Editor, PC Member Since Apr 2004
Location: Milky Way galaxy
Posts: 4,572
20 |
#5
YAAAAY, good news! I'm happy for you!
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Grand Magnate
Member Since May 2004
Posts: 4,415
19 |
#6
SOOOOOOO COOOOOL! I am happy for you.
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Legendary
Member Since Jan 2005
Location: USA
Posts: 15,093
(SuperPoster!)
19 6,336 hugs
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#7
(((((((( Stepford Sister ))))))))))))
I am so happy for your good news. I am so proud of you. Major hugs, Jan __________________ I still dream and I still hope, therefore I can take what comes today. Jan is in Lothlorien reading 'neath a mallorn tree. My avatar and signature were created for my use only and may not be copied or used by anyone else. |
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#8
My guess is that your neurologist will put you on one of the "abc drugs" - Avonex, Betaseron, or Copaxone. They seem to be the standard choice.
Sounds like you are doing all the right things! Take care, emmy |
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Wise Elder
Member Since Aug 2005
Posts: 8,106
18 76 hugs
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#9
Awesome news. I am glad you will be off the steroids soon.
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Legendary Wise Elder
Member Since Oct 2004
Location: Kentucky, USA
Posts: 24,757
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#10
Rayna,
It sounds like things are going much better for you. There is nothing like having Dr's that know what they are talking about & are willing to discuss your condition along with the possible treatments with you. That is the best place to begin. When they let you know what to expect & what drugs can cause what symptoms.....& what you can expect with the treatments. I am sure that once you are through with the steroid treatment, you will probably start feeling much better. It is definitely wonderful to know what is going on with your body & to understand what you are going through side effects rather than in fear of being in a huge flare up. I am sure that the best thing is that there has been a huge improvement in treating MS over the last 15 years. Even though it isn't something that we want to have.....at least the knowledge now is so much more advanced than in the past. Will be praying for your & your continued improvement, Debbie __________________ Leo's favorite place was in the passenger seat of my truck. We went everywhere together like this. Leo my soulmate will live in my heart FOREVER Nov 1, 2002 - Dec 16, 2018 |
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Wise Elder
Member Since Oct 2004
Location: AZ
Posts: 8,663
19 |
#11
Eskie's siggy: "There is no VALUE in life except what you CHOOSE to PLACE upon it
and no HAPPINESS in anyplace except what you BRING to it yourself. --- Henry David Thoreau" When I read what you wrote I was feeling gratitude and then I saw your signature and that just about sums it up as far as how I'm feeling about all this. It could have been so much worse for me, with the lifestyle I used to lead. There's someone in my homegroup who was feeling out of it and went to the doc. He was told his liver is shot and he has Hep C. He's coming up on 2 years sober. MS wasn't caused by my old lifestyle, the old terrible choices I made. It just happened. And it's so liveable compaired to so many other things I could have been afflicted with. I feel so blessed that I've CHOSEN to make the best of this, to find the good in this, to stay HAPPY. I know that my body would not be doing so well without the influence of my mind and spirit. I have absolutely no doubt that without my faith, my wonderful friends and THIS PLACE, I would have lost my mind and only seen the negative in this situation. To be able to come here and play in the fun chat forum, or post about keeping the weight down, or update in general has kept me company these past two weeks that I have been letting this sink in without being able to work. I love Psych Central!!!!! __________________ |
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Poohbah
Member Since Nov 2005
Location: MASSACHUSETTS
Posts: 1,181
18 |
#12
Raynaadi, I am very happy about you being sober.... My life partner/spouse has MS it is a difficult disease.... She was diagnosed a year ago..... she is on Copaxone... she has good days and bad days.... by I love her everyday.....good luck with everything....PM me if there is anything I can do for you.....
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Veteran Member
Member Since Jun 2005
Location: Wisconsin
Posts: 324
18 |
#13
((ray)))))) I also have MS, but mine is not relapsing and remitting mine is ongoing with new symptoms all the time..... Good Luck and hope that all meds will keep it at bay for you..Having the dx at least can help to set the mind at ease instead of someone telling you its all in your head, which they did to me for years, even though I had lesions and everything... it is because of those inept docs that I got worse.. sometimes my anger at them and the insurance companies that control them gets out of hand and here I goooooo.... Take care and as I said best of luck to you.. Linda
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Legendary Wise Elder
Member Since Oct 2004
Location: Kentucky, USA
Posts: 24,757
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19 14.6k hugs
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#14
((((((((((((rayna))))))))))))))),
I am glad that you have been able to understand your illness. Like I said, having good Dr's who are willing to work with you & let you know what you are dealing with is a major part of the battle. Then as Linda said.....which I have found out to be the most improtant part of any illness is that having the Dx...can help to set the mind at ease instead of someone telling you it's all in your head. I too have experienced the "all in your head" problems with my migraines. I had a pain specialist who wasn't willing to provide me with enough medication to control the pain. When I would go to the ER for a pain shot....I was considered to me "drug seaking". When I experimented & found out how much of my medication it took to control my pain (double what I was being given), he refused to treat me anymore & sent me off to find some other pain specialist. The next pain specialist I went to told me that I needed to go off all my meds & the migraines would go away. I asked her what she would do if that didn't work & all she would tell me was that it would work. I couldn't trust a Dr that wasn't willing to consider all the possibilities & luckily she sent me to the pain specialist I have now. I had an MRI done of my head & othing showed up that would indicate anything except migraines. He found what he called white spots (leisions). He explained that they were caused by having severe migraines & at that point, he was totally willing to prescribe the amount of narcotics that worked for me. He told me that if at some point, the medication stopped working (I became tolerant to it), he would have to try something else. It has been almost 4 years & the med is still working. All the other pain specialists & neurologists tried everything in the book to control my migraines including neck fusion due to a horse accident I had when I was in college 30 years before the migraines started. Until I started going to the pain specialist I have now.....everyone was continually telling me that is was all in my head.....that was right...migraines are in my head, but it wasn't imagined. I found it such a relief to find a Dr that was willing to listen to me & work with me & end up helping to so that I could actually get my functioning life back. He wasn't afraid to go up against the DEA because he told me that he documents every case & they can't fight his treatment when the patients fuctioning in life is completely improved. Besides my migraines, I also had a horrible experience when I ended up not being able to feed myself, or even walk by myself. I couldn't even get myself into the bathroom. My husband would help me into the bathroom before he left for work & then as soon as he got home....I was so desparate that was the first thing he had to do was walk me into the bathroom. I couldn't even shower myself. I couldn't control my hands to get food into my mouth. It was something that just suddenly hit & it took me a few days until I decided it was really a problem & went to the ER. They reviewed the meds I was on & decided that the compozine for my nausea from my migraines might be the culprate. It was know to cause symptoms similar to Parkinsons. I quit taking that immediately. I figured I could give it a couple of weeks & if it was a reaction, it would go away by then. No luck. I continued to have the problem. I was really scared at that point......as if I didn't have enough other problems.....I didn't need to come up with a strange desiease that no one else in my family had ever had. I was so afraid of what was happening to me....I went back to the neurologist I had originally seen for my migraines. He did several tests, but also reviewed the meds I was still on. He realized that Thorozine could also cause the same symptoms that compozine caused.....& he took me off of that med. Several more weeks passed & no improvement......my fear kept building by then.....but I ended up being very lucky & the symptoms ended up going away as quickly as they came. From that experience, it has allowed me to have a much better understanding about the symptoms that people actually have with illnesses & how hard it is to be wondering if it really is the desease that your dealing with. I ended up being on the lucky end of that experience, but I sure did learn alot from it. Realizing how hard it is for people who really are disabled by deseases like that & how important it is to have good Dr's to work with you....either for recoginizing side effects or actually recognizing the symptoms of the desease. I am glad that you have a good Dr to work with you & to be on top of your treatment.....keeping you informed. It is so great that are so positive about your treatment & how you are feeling about everything you are going through. When I read that quote from Thoreau, it really hit home for me.....realizing that I am the only one that can control how I see my own life & what I can make of it. There is also the saying....."if you are given lemons, you can choose to make lemonade out of them" (or something to that effect). I am so glad that you are looking at your life in a very positive light....you are very correct in realizing that given your past choices, you could have had a much worse outcome that what you are going through. Any illness takes alot of getting into the right mental thought process to deal with it, but being positive is the best way to start. Love & hugz, Debbie __________________ Leo's favorite place was in the passenger seat of my truck. We went everywhere together like this. Leo my soulmate will live in my heart FOREVER Nov 1, 2002 - Dec 16, 2018 |
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