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  • heyjose
    After trying to find out what was going on with me on and off for three years a neurologist diagnosed me with RRMS April 29, 2019.  I asked the neuro for information and he referred me to several website.  I think this is kind of funny since many doctors willl tell you to stay away from medical websites.  So off to reading I went.  The more I read the more it appeared my progression didn't fit with RRMS.  I could only identifiy one possible relapse-remission and that was after my diagnosis.  There was definately a relapse, but the remission still hasn't happened.  My symptoms didn't really fit with PPMS either.  One day I came across an obsolete diagnosis of relapsing progressive MS that seemed to fit my progression better.  A few years ago this diagnosis was folded into PPMS.

    I had noticed a slow steady increase in symptoms.  My symptoms increase so slowly that to compare week to week or month to moth there really isn't a big change.  If you compare now to three months ago you can see the increase.  After complaning to my neuro that my symptoms seem to be increasing he sent me for another MRI and more testing I had already done.  The good news (kind of) was no new lesions.  The bad news was new nerve damage was seen.  I kept having quesitons about if there is no new lesions how can there be new nerve damage.  He wasn't able to answer the question to a point where I could understand.  I finally decided to get a second opinion because I was losing confidence in my neuro's ability to manage my condition.

    My second opinion was provided by a neuro who specializes in MS.  After presenting him with my tests and explaining my symptoms he diagnosed me with PPMS.  It was not unexpected, but still has been a blow.  Almost all the information I find about MS is for the relapsing-remitting kind.  Does anybody have any good sources for information about PPMS?  
  • MS_Navigators
    Hello,

    This is Steve with the National MS Society.  

    I'm glad you found this site and hope you are able to connect with others that have been through similar situations.  I wanted to provide you the following link which will take you to the section of our site specifically for information on PPMS.  I hope this information is helpful:

    https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Primary-progressive-MS

    For further information and support, do not hesitate to give us a call at 1-800-344-4867 and speak with one of our MS Navigators.  

    take care,

    Steve
  • maria1
    Hey Jose, you have been on my mind awhile. I am wondering what you are doing for yourself. Just because they say you have ppms doesnt mean you will hurry up and get worse, attitude means alot, and so does a plan. Are you in pain, what symptoms do you see, are you on any medication, are you having side effects from medication, are all your symptoms ms, are your nerves acting up. maria
  • heyjose
    maria1 wrote: Hey Jose, you have been on my mind awhile. I am wondering what you are doing for yourself. Just because they say you have ppms doesnt mean you will hurry up and get worse, attitude means alot, and so does a plan. Are you in pain, what symptoms do you see, are you on any medication, are you having side effects from medication, are all your symptoms ms, are your nerves acting up. maria


    Currently I am taking Tecfidera, but since it is pretty much useless for PPMS, I will be switiching to Ocrevus sometime in the next two weeks.  I also started a bunch of vitamins.  Starting O should have been faster, but I forgot I had to get some tests done.  I'm chalking that forgetfulness up to stress.  I developed the wonderful eye lid twitch after diagnosis, which is a sign of high stress not MS.  

    As far as pain right now it is spordic and manageable.  The doc asked what I was taking for it.  The first thing that popped into my mind was hate, anger, and grit (prior military and law enforcement so my sense of humor is a bit raw and dark).  Thinking he wouldn't understand, I answered with grit.  I hate taking medicines.  My main symptoms are numbness to some degree from my feet up to about my nipple line.  It increases as you go down to my feet.  This new doc pointed out he can see exactly where the lesions are by how severe the numbness is.  My right fingers are almost completely numb and I have slight muscle weakness and motor disfunction in my right hand, while my left four finger tips (not the thumb) are numb.  Numberness in my face, mouth and sprodically in my nose and sinuses.  Nerve pain comes and goes in my feet, and a cramp type pain (no cramp just the pain) in my legs.  I also have motor disfunction in my legs so when it is bad you can tell I have something wrong and should probably be using a rollator.  When it's not so bad I have a slight limp that is only noticable if you know me, otherwise you'd think I came from the 'hood and have that slight gangsta walk.    Most days it's not bad, but if I push it, I am in for a tough time walking.  
  • dkw
    heyjose;
    you seem to be “embracing” your situation admirably:) onward. 
  • maria1
    Jose, it is good to know that there is O for you to try for relief, it is suppose to be useful, yeah and hooray. Have you tried some sort of probiotic? not one with sugar, like plain yougurt or fermented vegetables or a good one from the health food store? Take a deep breath, ha ha, deep breathing and plenty of water to remove toxins too. Alpha Lipoic Acid helps with brain fog, thou it does sometimes have headache as a side effect. Have you though or tired hemp oil or cbd oil for the numbness?

    Hate anger and grit are good motivators used once a day along with a good dose of laughter to warm the heart.
  • heyjose
    I take the Tecfideera with yogurt to help with digestion and keep the side effects minimized.  The forgetfulness I write off to being stressed.  Being diagnosed with MS has a tendency to add a bit of stress, especially when your job is on the line.  

    I am currently in a postion that is heavily regulated by the federal government and requires drug testing, CBD and hemp are out of the question.  CBD can cause a positive drug test, since most products say they contain trace amount of THC and aren't regulated by the FDA.  THC is still federally illegal.  In my case a positive drug test means immediate termination with no real appeal rights.  Not too mention, I am allergic to MJ.  Not sure what component in the plant, but something in it doesn't agree with me.  Hemp shouldn't cause a problem, but I'm not willing to try it and find out.  Only 2959 days until retirement (about 8 years), if I can make it that long.  I should be able to make it.  
  • maria1
    Talk to your brain, the computer part, tell it to fix what you want it to fix, say it out loud and silently because I dont know which way works better. The brain does what we tell it to do, though sometimes it takes a little longer than others. Dont discount the power of the brain. That you are still working is remarkable, bravo. 

    With your minds eye, stare at the numb side of your face, describe as much as possible what the experience feels like, find as many words as you can to describe it, repeat the process often looking for new words, this will aid your brain to focus its energies to that place, when you have a headache do the same thing as often as necessary, the more you focus on the issue the smaller it will get.