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  • mags4050
    i would love to hear from any one who has been dignosied with primary progressive.  I am 56  been around the block with a new  guy who say it is rare and can not believe he has seen two in two days.  he spent 45  minutes telling me the  radiologist and primary was wrong.  Now I know they can not dignosis,on a radiologist repot and a  family doctor  reading  a brain Mri then he looked at my Mri and said  OH  so he go and show the fils to his attending.   . the attending came back with a differnt story. have to check pp

    I feel geat, well sort of  and am hope ful  but could be in denial.  My legs are weak and upper if fine .  I have lots of lesions in the head , waiting for thoratic and cevial  mri report back by monday or tuesday in the next days.also alotof other blood tests.
    what should i expect  I hear there is no  there is no treatment.  Any tips on autoimmunine diets and  allternative treatment.  I will beat it  .  just need help from  other who can share their experience.
     many blessigs and thanks for  all your help   isnt this just the shits  to deal with.
  • annavio
    I also have primary progressive: doctors told me it it the worst because there are no treatments; instead I have been using LDN low dose antraxone for 4 years and the porgression has stopped; I live in Italy but try to see LDN site and you will get info, of course I have walking diffisunties and balance but the sm has stopped and that is good: LDN is  off-label and in trail but it has no sidefeects and it is not dangerous..try to see for me it was good seeing that for primary there are no other choices. Write to me if you need
  • Avatar
    I am a 63 year old woman diagnosed with late onset, chronic, progressive MS. I was given no hope or treatment options. I was told that my age would prevent me from taking MS medications because of increased side effects. With no hope in sight, I did my own research on the use of Mesenchymal stem cells. I had SVF Therapy (Stem Cell) on July 26, 2013 and I cannot express enough how we'll I am doing. I no longer need my walker or cane, the shaking and tremors are gone. Please read my journey and give hope to all who have none. Brenda J. Brenay Ph.d Clinical Nutritionist ~ Retired www.docbrenay.com Here is to hope!
  • Jafo
    Hello, I have been diagnosed with this wonderful type of MS as well. At least that is what my neuro says. Is the only one that fits. MRI done in 2010 discovered leisons on the brain and the fact that I am not dead or a total vegetable rules out all but some sort of demyelinating disease, as the report says. A wonderful spinal tap confirmed MS. And since my symptoms don't fit anything other type of MS, then must be PP. What helps is that my neuro has MS as well.I love his thought on the types of MS. He believes that there is only one kind, the sh*ty kind. Be careful when you get this label put on you. They wre still trying to figure out what the connection between PPMS and insurance carriers is. It seems as though once you have the PPMS diagnosis, insurance doesn't want to cover treatment. Okay, a poor attempt at humor there.

    As far as me, The syptoms started a year to year and a half before the MRI. My left knee was sore a fter walking on it all day. At the time I was delevering phone books and climbing alot of stairs. Thought that was th problem(the stairs). Turned out that was not the case. It has progressed th the point that I am now in a wheelchair when I am awake. The left leg can be moved with help, but I cannot walk more than 3". The balanceis also not good. The left arm has more self movement, but is pretty much useless. I have tried taking Avonnex and Robaxin(4500mg a day). Hated the flu like syptoms with Avonnex. Would be sick for 24-48 hours after the shot. Am now on rebif and baclofen. Is strange that the dosage of the same interferon is higher and more times a week (30mcg once aweek/44mcg 3 times a week) and yet I have no flu symptoms.
  • Rose1
    Hi, I also have PP for about two years now. I am 50 years old. Like all of the other forms of MS PP progresses differently for everyone,this is my story. I was an avid cyclist, so very fit, also I was working full time and working on a Masters degree as well as being a mother and wife. Two years later I can no longer cycle and my hope for a Masters has also faded away. Walking is very difficult now and I often use crutches. I still try to get to the YMCA as often as possible, but my endurance level is very low. PP is considered to be beyond the help that interferon provide, so other than Ampyra I take no MS medication. I try to stay on a gluten and dairy free diet as much as possible as well as taking a cadre of supplements. I have read, and try to follow examples found in Celeste Pepe's Reversing Multiple Sclerosis and Jon Barrons The Miracle Doctors; they both provide great information.
    Your right this is the "shits," and I feel as far as the medical community is concerned we are on our own so we need to read and stay informed. Stay strong.
  • THERESAF
    AS FAR AS I KNOW - I HAVE S.P.M.S. BUT I AM THE NEXT STAGE NOW.
    I AM 50, AND ON TYSABRI WITHOUT ANY NEW COMPLICATIONS.
    I JUST HAD A PHONE CALL FROM MY NEUROLOGIST THAT SAID MY BLOODWORK WAS NORMAL.
  • THERESAF
    ROSE, I'M 49 WITH PPMS.
  • mystergril2002
    Amen; on the no medication part Im choicing to stay away from then as long as I can. Im only 29 had all the test ran twise because I didnt want to believe that I had MS more then that PP.
  • THERESAF
    Rose, I'm 49 with SPMS and intolance to HEAT!
  • THERESAF
    Now, I don't know what to do! I don't have any pain; but I can't walk, cook/fix meals, have any control over cleaning anything or fixing food, and I can't even write (penmanship)
    I want to want to exist!

    HELP needed
  • Avatar
    I am a 63 year old woman diagnosed with late onset, chronic, progressive MS. I was given no hope or treatment options. I was told that my age would prevent me from taking MS medications because of increased side effects. With no hope in sight, I did my own research on the use of Mesenchymal stem cells. I had SVF Therapy (Stem Cell) on July 26, 2013 and I cannot express enough how we'll I am doing. I no longer need my walker or cane, the shaking and tremors are gone. Please read my journey and give hope to all who have none. Brenda J. Brenay Ph.d Clinical Nutritionist ~ Retired www.docbrenay.com Here is to hope!
  • seenjo11
    Hi. I was Dx back in April 2012. My neuro thinks it is PPMS too. Partly because of my age (46) and that I have no history of the disease. No flares. No relapses. I walk a little funny these days - like I scissor a bit. But I have been doing that for at least 2-3 years that I can recall. It may be a subtle onset for folks like you and me....or not. There is just no way to know. The best thing you can do now is to prepare yourself for the ride. Read up on MS. Diets? I don't know of anything specific. Eat well and eat healthy. Like you are in training....because you are in training. Exercise. Make sure you get your rest. Good luck with your tests. Sean
  • THERESAF
    ms won't go away!
    I've had the disease forever (SINCE 1989).
    How long is it safe to have Tysabri?
  • Avatar
    I am a 63 year old woman diagnosed with late onset, chronic, progressive MS. I was given no hope or treatment options. I was told that my age would prevent me from taking MS medications because of increased side effects. With no hope in sight, I did my own research on the use of Mesenchymal stem cells. I had SVF Therapy (Stem Cell) on July 26, 2013 and I cannot express enough how we'll I am doing. I no longer need my walker or cane, the shaking and tremors are gone. Please read my journey and give hope to all who have none. Brenda J. Brenay Ph.d Clinical Nutritionist ~ Retired www.docbrenay.com Here is to hope!
  • problemchild
    hey i hear you girl yes this is the shits to deal with
  • Avatar
    I am a 63 year old woman diagnosed with late onset, chronic, progressive MS. I was given no hope or treatment options. I was told that my age would prevent me from taking MS medications because of increased side effects. With no hope in sight, I did my own research on the use of Mesenchymal stem cells. I had SVF Therapy (Stem Cell) on July 26, 2013 and I cannot express enough how we'll I am doing. I no longer need my walker or cane, the shaking and tremors are gone. Please read my journey and give hope to all who have none. Brenda J. Brenay Ph.d Clinical Nutritionist ~ Retired www.docbrenay.com Here is to hope!
  • fightback
    I was diagnosed with PPMS 11 years ago, at age 49. For the first few years after the diagnosis I was going downhill fast. After 2 years I could just barely walk with a cane. Then I got into physical therapy and everything started to improve. After 5 years of physical therapy, as well as Pilates, yoga, and the Swank MS Diet, I was able to throw away my cane. My physical therapist calls it neuromuscular re-education. I book I read calls it rewiring your brain. Get on a healthy diet that you can stick with, Swank, Paleo, whatever, and get into physical therapy as much as possible, and do as much exercise and walking as you can tolerate. Cold showers are a great recovery if the exercise heats you up too much. It is hard work but it is really worth it. 
  • Avatar
    I am a 63 year old woman diagnosed with late onset, chronic, progressive MS. I was given no hope or treatment options. I was told that my age would prevent me from taking MS medications because of increased side effects. With no hope in sight, I did my own research on the use of Mesenchymal stem cells. I had SVF Therapy (Stem Cell) on July 26, 2013 and I cannot express enough how we'll I am doing. I no longer need my walker or cane, the shaking and tremors are gone. Please read my journey and give hope to all who have none. Brenda J. Brenay Ph.d Clinical Nutritionist ~ Retired www.docbrenay.com Here is to hope!
  • mags4050
    Thanks seenjo11 for the reply.  Encourageing.    Did they dignosis you with the neck MRi and or Lumbar puncture.  It is good to hear the progression can be slow.

    Take care of your self  
    mags4050
  • Avatar
    I am a 63 year old woman diagnosed with late onset, chronic, progressive MS. I was given no hope or treatment options. I was told that my age would prevent me from taking MS medications because of increased side effects. With no hope in sight, I did my own research on the use of Mesenchymal stem cells. I had SVF Therapy (Stem Cell) on July 26, 2013 and I cannot express enough how we'll I am doing. I no longer need my walker or cane, the shaking and tremors are gone. Please read my journey and give hope to all who have none. Brenda J. Brenay Ph.d Clinical Nutritionist ~ Retired www.docbrenay.com Here is to hope!