introduction from Elizabeth, a forum newbie

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EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 2/25/2009 8:58 AM (GMT -7)   
Hello to all !!!
My name is Elizabeth, a 44 year old 20 year MS veteran. I have been married 26 years to the coolest most supportive man on the planet and have 2 totally awesome adult children. Have been recently, finally diagnosed with MS but we have always known. I have always managed my MS naturally even though I know that is not the popular thing to do and now find myself after my most recent flare up in a position where I don't think that is going to work anymore. My son and daughter in law found this site for me and hopefully I can receive help and contribute to the forum.

Peace and wellness to all,
Elizabeth

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/25/2009 10:14 AM (GMT -7)   
Hey Elizabeth!

Welcome to the board! So u have known u had ms for 20 years, but were only recently diagnosed? Isn't it funny how long it takes to get that dx's sometimes? Have u taken a look at any of the progression therapy meds? Are u considering those?

We're so glad u'r here and hope u'll feel comfortable asking questions or posting. We'll do all we can to anser u'r questions or help u find information. Again, welcome and we look forward to getting to know u.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 2/25/2009 7:11 PM (GMT -7)   
Hey Elizabeth,

Welcome to the board!! We have a few here that are not on any progression therapies. We have some that can't tolerate them and we have some that are doing the natural approach as well. All are welcome!!

You have a wonderful attitude! I am very glad to hear that you have a strong support system through your family. Please feel free to post often. We have a live chat on Monday afternoon/evening. That happens around 6 central time. We would love to "see" you there.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 2/26/2009 9:24 AM (GMT -7)   
Thank you both very much for your replies and your warm welcomes.

Rhonda - To answer your question, I have been offered meds for many many years and have never considered them until now. Meds for spasticity are the only ones I'm thinking about right now. I have a long history of very bad reactions to medications of all sorts but am not sure I can control the spasticity as I have in the past.

Gretchen - Thank you so much for the information on the chat on Monday evenings. Since I am new to forums and computers could you give me more information on how to find and attend the chat you spoke of.

smilewinkgrin :-) smilewinkgrin :-) smilewinkgrin :-)

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/26/2009 12:37 PM (GMT -7)   
Hey Elizabeth

Gretchen is unavailable now, so i'll try to answer u'r question. If you have never chatted before, you just need to click on the word "chat" in the blue bar in the upper right of this page. Select the Multiple Sclerosis room and sign in! Use u'r sign in information that u use to get into Healing Well and post. We will usually post a chat reminder either on Sunday or Monday with the same information. I hope this helps.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 2/26/2009 7:22 PM (GMT -7)   
Hi Elizabeth,

Welcome. I have had MS nearly my whole life and have always controlled it naturally - diet, exercise, meditation etc. I was only dxd 14 yrs ago when I became secondary progressive. I agree, for some of us spasticity is the big issue. I could not take baclofen orally as I was allergic to it My neuro told me for oral baclofen to help the spasticity & pain I would have to take a high dose & do exercise with a physio. For years I controlled the spasticity with exercises (some I found in a book written by a lady with MS, sorry I cannot remember the name). Not a lot but some every day. Then I was told to stop & that the exercises were increasing the spasms. OK, I thought, I will stop for 2 weeks & see. Well, stopping exercising did NOT help the spasms & in that short time the spasticity increased so much I could not start exercising again.

Then I went into a downward spiral for two years with the spasticity just increasing all the time. The worse the spasticity the less exercise I could do, the less exercise I did the worse the pain became, it was a viscious circle. As the spasticity increased so did the pain until I had pain beyond 10/10 virtually continuously, on the surface of the skin, legs,& foot. Then I got a baclofen pump – now no pain and much less spasticity. It is miraculous. I have my life back. I am able to exercise again & I find that it definitely helps the weakness that can be a side effect of baclofen. Wish you all the best smilewinkgrin smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 2/27/2009 12:44 PM (GMT -7)   
Popsie - Thanks so much for all of the information. If you wouldn't mind could you tell me the type of reaction you had from oral Baclafen and how soon it began after taking it. Are you able to exercise regularly now with the pump? How has your spasticity changed since the pump? Still have it, but not as bad? I really appreciate you sharing your story and knowledge with me. Your struggle with the exercising is what I am going through now so that info also is helpful to me. It sounds like what you are saying is that even though the exercise causes more spasticity it is still better to continue?

Take care,
Elizabeth
~~~Know Peace, Know Power~~~

***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 2/27/2009 11:18 PM (GMT -7)   
Hi Elizabeth,

I am really happy to be able to help in any way. Please ask anything you want.

I first started taking baclofen at 5 mg and then after a few weeks increased to 10 mg. Soon after I began taking the higher dose I started getting nerves jumping in my face. Sometimes up to 7 at a time. When I checked with the pharmacist who supplied it this was one of the many side effects listed. The worst thing for me was that I had one or two nerves that continued jumping for up to 6 months after I stopped the baclofen. But as I said I am very sensitive. This of course makes it doubly wonderful that I have been taking continuous baclofen (in the pump it is called lisoreal) for 10 months now. But I would NOT dare to have had the pump implanted without desensing to baclofen first.

The pump has been a miracle for me and given my life back. I still have a lot more spasticity than I would like but if I increase the dose it makes me too wobbly, as it is I feel like I am on a boat. But the pain and spasticity had got so bad that a bit of rocking (when I stand) is not a problem. What happened to me is that when I stopped exercising the spasticity seemed to increase almost weekly. I kept thinking it could not get any worse but it did. The scariest thing was when the spasticity increased so much that my legs started clamping together & it moved up my spine. My left leg became so stiff that I could not sit at all. If I did manage to sit (with it stuck out at a right angle) then within 10 minutes I would have an intense spasm in the leg that forced me to stand. Ditto when I slept, so that I was up 15 times a night & had 7 showers a night as they helped stop the spasms. Ceiling of the bathroom got covered with mould!!! Going to the toilet was a nightmare with a leg that would not bend in addition to the action of pulling down my pants would trigger an agonising spasm due to skin sensitivity. I can sit now, lie down (tho leg is still stiff at night it has some bend) and the leg bends enough for me to get into the bottom of cupboards and I can kneel (tho stiffly). To be without pain is absolute bliss.

Yes, I do several types of exercise now I have the pump. In fact I can only do them because I have enough bend in the leg to allow it. I have a ninetendo Wii Fit (your kids will know about this) and do some muscle, 1 yoga and mainly balance exercises. These do help the balance and use a lot of muscles in the legs, ankles and feet. Its not too challenging but I do hold onto something as my balance is not good enough to do it without. BUT the MS physio said NOT to do any exercises with a twist if you have a pump because you do not want to do anything that might kink the tube or dislodge the catheter in the spine. This means pretty much no yoga and no hula hoop exercise which I used to do on my Wii fit.

I have a stepper which I try to do daily to see if I can regain enough lift to climb stairs again. I also have restless legs which can wake me several times a night and then I find that a few mins of the stepper allows me to sleep a few more hours. I use a cross trainer if the day is cool enough which I used to use when I was battling with the spasticity/pain. The physio at the MS centre told me to go backwards on this as it is more challenging. I also do a couple of exercises on my hands & knees and lying on my back for the core which the physio said will help walking & also stopped backache when sitting (caused by weak muscles). I have also started using a swiss ball to sit on when I watch TV or at the computer and he gave me more exercises for this. Sounds like a lot but I just try to build them into my day ie stand on one leg when I am at the sink, use control when I go down stairs. In total probably would not do more that I hour in a day.

I do not think that exercise causes more spasticity. I had painful spasms and some spasticity in my left leg. My experience was that NO exercise definitely made the spasticity worse. When I stopped exercising it just went crazy. The spasticity in the leg increased greatly affecting the other leg and going up the back. Hope this helps. All the best smilewinkgrin smilewinkgrin smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


EBullins
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 2/28/2009 6:46 AM (GMT -7)   
Popsie,
You are awesome!!! Thanks so much for ALL the info!!!! I really appreciate the time that you put into it. I am trying to adjust my yoga and tai chi to work with the spasticity. Not stop doing it, just reorganize it to see if that helps. To the neuro on Monday and hopefully will get more helpful info. Sounds like you have had quite an interesting journey and I am encouraged and amazed by your positivity. Thanks for that!!!! I am so glad that you have found things that work for you. I try to stay positive at all cost so hope to be able to return the support to you as well. Take care!! yeah
~~~Know Peace Know Power~~~
 
***Let emotions subside then decide***


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 2/28/2009 6:35 PM (GMT -7)   
All the best , Let us know what happens with the neuro. As you are into the non medical stuff I wanted to suggest you try self hypnosis - I have found it very beneficial. Good luck
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995. Baclofen pump since 2008.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 3/2/2009 4:47 PM (GMT -7)   
Welcome Elizabeth! You have found an awesome supportive sight!
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

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