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Old 12-12-2009, 01:43 PM   #1
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Anyone here with ppms? Please respond

I WAS RECENTLY DIAGNOSED WITH PPMS, STARTED A THREAD HERE BUT SOMEONE UNTERCEPTED MY THREAD. WOULD LIKE TO KNOW WHAT I AM IN FOR BY SOMEONE WITH THE SAME DIAGNOSIS.
p

 
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Old 12-12-2009, 05:21 PM   #2
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Re: Anyone here with ppms? Please respond

Hi, my neuro told me that the symptoms I totaled (all the problems I had) for a 3 year period would likely cycle through for the rest of my life. I have found that if you aggressively keep your triggers in check, life is pretty smooth. There will be triggers over which you have no control. On those occasions, learn to stop and rest and no matter what, never blame yourself for your predicament.

I stretch daily, try to follow the Swank diet, exercise 5-6 days a week, walk as much as I have energy to do it, and never- NEVER- stop. Progressive, to me, means nothing unless I allow the progression. I went on full disability in 2002, BUT I had my best check-up in 2009 (both appointments ). Positive energy yields positive results. I trust in my daily prayers and take one day at a time.
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Old 12-14-2009, 03:46 PM   #3
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Re: Anyone here with ppms? Please respond

i do not know what you mean by triggers or cycles. i have had the same symptoms for about 6 years but was just diagnosed with ppms. i have severe balance problems, going from a cane to a walker, same numbness and tingling in hands and feet, muscle spasms in neck and lower back. i have "foot drop" that has gotten worse over the years and was really my first symptom. i cannot exercise as others can. i am 62 and also have diabetes. i refused to take copaxone as others including my lousy doctor said it probably won't help you. i am also severely depressed.
P

 
Old 12-14-2009, 04:59 PM   #4
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Re: Anyone here with ppms? Please respond

Hi P. You sound depressed. Are you being treated for depression? You maybe want to talk to your Neuro about it...

Triggers and cycles go hand in hand. A trigger is something that sets off an excaberation...even with PPMS, you still have better days then others. Maybe its heat, or the change in weather. Maybe stress, or a certain relative/friend who gets to you. Maybe its the holidays....all of these can be triggers which set off your system and make you feel worse then usual. Cycles are what happens when you identify the triggers and notice how things seem to go round and round (or hand in hand).

By identifying your triggers, you can try to avoid them. For me, I stay in the a/c whenever the humidity reaches 90% and the temp rises above 80 degrees. I also keep my contact short and brief with certain people, because I know that listening to them, will set off my own triggers. I also try to get enough sleep, because I know for sure that if I dont get at least 7 hours of "good sleep",I cant deal with the rest of the world or have enough energy to get thru the next day.

I hope that sort of clarifies for you...

Meanwhile, what Jayhawk wrote, can be utilized by all of us. Eating right, exercising to any extent, and having faith can go a Looong way towards getting thru the day to day challenges that all of us face.

You mentioned that you cant exercise like everyone else. Most of us cant. However, we find things that we can do. For some, its aqua therapy in a pool- there are so many places where MSers can basically go for free or very reduced rates to swim- specialized programs for the disabled as well. Also, stretching and yoga can be done in front of your TV. There are several tapes out for disabled persons, which basically just help to stretch and utilize the basic muscle groups...on my cable station, we have exercise programs for all levels of fitness and I find that I can do the basic pilates and stretching moves- and I enjoy them! You might also talk to your doctor about PT (physical therapy) Some insurances cover this and a therapist can come to your house to work with you if you are having specific problems with gait (walking) or even occupational therapy, which is the day to day type activities that you might have trouble with. The MS society in your area can help you with this, by simply making the call...

There are allot of challenges to having MS, but once you get used to the idea and start to really challenge yourself, youll see that you arent any different then you were before! You just have to work harder to do what you did, and pace yourself so you have the energy! Im really sorry that you are depressed. Its not uncommon - nor is it unusual. You just got hit with a hard sentence..however, its NOT a death sentence, and if you choose to- you can live a happy fulfilling life. We are all here to cheer you on.
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Old 12-14-2009, 06:25 PM   #5
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Re: Anyone here with ppms? Please respond

I use a passive exercycle for my exercise. You should be able to stretch or add stretching to your routine.

Triggers are those things which set-off your symptoms from day to day. For example, temperatures below 52 degrees Fahrenheit really numb my hands and parts of my head. I wear gloves and a sock cap. If I do not heed the temperature drop, I will worsen and the effects will linger for a long time. If I intervene, I can avoid the problem. Triggers affect each of us differently. You need to discover what is unique about your situation. You may have similar ones. If you journal your symptoms according to time, temperature, etc...you might better be able to ascertain your triggers.

If you are indeed PPMS, meds are a waste. You can get meds to treat certain symptoms. For me, I do not do the meds. I hope you can feel better soon.
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MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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