diagnosed 1996 just joining thisisms

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diagnosed 1996 just joining thisisms

Postby mud » Sun Aug 08, 2010 11:24 am

I just joined this discusion page because of the new fever over the "liberation treatment".
I was dx'd in 1996 at the age of 51. My brother has been dealing with this monster for over 30 yrs. and he is six years younger than I.
I have been off of any meds since probably 2002. I had been on Avonex and then Copaxone with an addition of Baclofen. I just go along each day. I can't blame everything on MS but I do have some questions.
I noticed that a lot of people that have had the CCSVI treatment done noticed their breathing was easier. I didn't know the MS could affect one's breathing. Could someone let me know?
Mud
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Good to have you

Postby ppicklee » Wed Aug 25, 2010 12:30 pm

Just wanted to say hi mud and welcome. :-)
I'm sorry but I can't answer all of your questions about breathing. I can only speak about my own experience and that I'm just becoming short of breath now. It has been a long road and I am glad that the breathing thing has only started recently. Do whatever you can do to stay as healthy as possible.
I see that you entered this site earlier this month and again ... welcome. :-)
p.
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Postby ScottieSue » Thu Aug 26, 2010 10:57 am

Hi, Mud

My husband has PPMS (diagnosed 1997) and pretty much a "quad". One of my concerns was his breathing. He could say a few words and then I would see him try to take a breath in order to continue to work. The doctors also notice it and said that because his posture was so bad he was compressing his lungs. He also cannot cough or clear his throat without putting out a great effort. He now has a power chair that tilts and reclines and has all the bells and whistles on it (an really expensive - could have bought a new top of the line car for the $). Now that he can correct his posture by tilting back he appears to be able to say a few more words before taking a big breath to continue on. I don't believe that it is a symptom of MS just an additional problem because of his inability to hold himself upright.

And welcome to the forum.
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Postby AMcG » Thu Aug 26, 2010 12:23 pm

Welcome Mud

I have had liberation and my breathing improved a lot. Before liberation There were times when I thought my breathing was going to stop entirely, my rib cage hardly seemed able to move at all. It did improve when I started accupuncture and massage but was still not wonderful I couldn't take deep breaths.

One of the things I noticed after liberation was that I was doing huge yawns when I yawned and really expanding my rib cage. I hadn't noticed it before. I soon realized I could breathe a lot deeper than before. When I next went for a massage my masseuse remarked how the stiffness in my back and neck had gone and I noticed the massage felt a lot different.

I used to monitor myself on a flow meter and I never got above 450. I have just done my flow meter again and I did 550 - and I have a chest infection at the moment!
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Postby jimmylegs » Thu Aug 26, 2010 1:08 pm

for myself i can only say that my shortness of breath cleared up when i added magnesium to my regimen. i had been taking it prior but it was getting all taken up with my vitamin d3 intake. when i separated some of the daily magnesium out and took it at a different time from the d3, my breathing eased. strange but true. i use my ability to take a deep 'stretchy' breath as one of several personal indicators of magnesium status. but that's just me.
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Continuing......

Postby ppicklee » Thu Aug 26, 2010 2:34 pm

Scottysue -- I was diagnosed 1993. It's been a progression and now I'm a quad. I know what you mean about $$$. My husband and I just laugh and say... a BMW... that is cheap. :-)
AMcG -- this is great news. I'm so happy for you that you seem to be breathing deeper and if you don't mind me saying so... it makes me happy and perhaps hopeful for me as well. I have been trying to bust my butt (not easy when you're a quad :-)) with getting a line on treatment with some follow-up. What you doing for follow-up ? Hope all is going well!
See what you started Mud!?! You should be proud of yourself!
p
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Postby ScottieSue » Wed Sep 01, 2010 10:06 am

Hi ppicklee:

It actually seemed that once they dx Randy with PPMS the doctors just forgot about him as there is no meds for PPMS. Every year he would see the neurologist who would sit behind his desk and say how are you doing and then advise no news on treatments for PPMS and then say see you next year. Last year, I actually had a blow-up at the neurologist. I said every year we come, you do not even get up from your chair, you have not examined or touched Randy in years, and I told him it seems like he has just forgotten about Randy. Well, he checked Randy over and referred him to the rehabilitation center. Randy spent 2 months there and was finally feeling like something was being done. That's where we got the expensive chair, the OT at rehab said she is not discharging him as she will keep checking on him. The doctor saw him for a 3 month checkup recently after discharge and said he would see him in 1 year or if we need to see him again just call. Randy said he is not even going to bother going back to the neurologist. So now Randy has actually 2 OTs looking after him and we are receiving help from the Paraplegic Association attempting to get some homecare. Not having much success - if you are the "working poor" the government doesn't help you. If we were rich - we wouldn't care but if we were on welfare the government would be falling over itself to give us help. So, the best thing I ever did was "blow up" at the neurologist and now Randy is getting followed up and doesn't feel like he "fell through the cracks".

Sorry for the long story.
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.

Postby ppicklee » Wed Sep 01, 2010 1:06 pm

Scottysue. Please never apologize for a long story. I think we are all here to support each other. If you need to vent. Vent. It is safe and I will listen. I basically go to my neurologist to appease my long-term disability claim. The course that I have been on is not "sexy" enough. By "sexy" I mean that nobody looks twice at the MS thing. I have worked with rehab. Believe me... I think I've done it all. But please PLEASE keep coming with the suggestions because maybe, just maybe :-), I have not done it all.
p
PS if you are wondering how I can "type". I can't. I use voice command. It is compatible with certain pages or programs.
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Postby ScottieSue » Thu Sep 02, 2010 5:17 am

ppicklee:

Isn't it great what technology can do - Randy's new chair has given him some "freedom". He can control the TV (turn it on/off, change channels, turn sound up/down) and he can also move his computer icon (open/close programs, go up/down/side to side) all with his head controls. We can also set it up to turn lights on/off and probably work with anything that has infrared but we need to buy a certain switch or something like that. In otherwords - spend more money we don't have.

He also has the voice command although he doesn't use it much. He is not one for going onto sites that require typing. He just likes to browse.
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Mud?? Scottysue and I are talking

Postby ppicklee » Thu Sep 02, 2010 1:32 pm

Remember what I said about me and my husband laughing that a Mercedes was cheap?? It is cheap compared to this. Anyways... technology is awesome. I have all that you spoke about. Keep those suggestions coming :-)
p
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.

Postby ppicklee » Thu Sep 02, 2010 1:41 pm

PS -- itunes is very voice command friendly
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