Multiple Sclerosis Community
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Avatar universal


Since I was forced to change my health plan or physicians. I am now facing a situation where I will have to do without my medications for my symptoms or win the lottery ( But I don't play the Lottery). I have been diagnosed with PPMS (primary progressive MS) at first diagnoses in 2005 my diagnosis was RRMS (relasping remitting MS).As most know the diagnosis changing over time is common. My diagnosis means no injections or pills on the market to slow my progression. The disease is incurable,progressive and affects many parts of my body and mind. I don't have enough energy to sit here and hunt and peck out my story. Nor do you have the time as I am sure your company is extremely busy. To summarize I am  going to be suffering more without the meds to control my painful, and relentless MS .If you don't have MS, or know someone who suffers the disease you are very fortunate. I would not want anyone to have a diagnosis of MS. My heart goes out to the younger generation  Sincerely, Pamela S. Rhodes
7 Responses
1831849 tn?1383228392
Hi Pam - Welcome to our group. I'm sorry you're having a hard time getting meds.

I'm not sure I understand the reference to Montel Williams in your subject. You do not mention him in your post. One thing I want to clear up is the transition of RRMS to PPMS. Thus does not happen. RRMS never becomes PPMS. PPMS is an initial diagnosis. Perhaps what you meant was RRMS transitioning to SPMS, secondary progressive MS. This transition is common in people initially diagnosed with RRMS.

667078 tn?1316000935
Hi Pam,
   That is terrible. I also have PPMS. I went two years without insurance. I used the cheapest drugs available or doctors samples. There are options.

Avatar universal
Many of the drug companies have financial help programs, you have to find them on the internet and call them usually.  Biogen has a great program.  
Avatar universal
I guess the Neurologist was wrong. First diagnosis was RRMS in 2005,in Maryland.  My neurologists here in Fl. diagnosed me with (PPMS). Primary Progressive Multiple Sclerosis.I have read and been told that diagnosing PPMS can take a few years since first diagnosis of any MS. This is due to the slow progression. PPMS is slow, some cases very slow. Any way thank you for your time. Appreciated. Pam2005  :)
Avatar universal
Thank you very much for the useful feedback. Do you mind if I ask when you were diagnosed with PPMS and are you mobile? Hugs Pam2005
Avatar universal
Thank you .I am going to check that out. pam2005
667078 tn?1316000935
I was diagnosed in 2009 with MS and PPMS 2010. I have had PPMS since my first attack in 1965. I am some what mobile. I use to walk better. I have permanent double vision, vertigo, cognitive problems, mood disorders, and pain. I also have stage 4 Cancer. I am 50. PPMS usually is slow until you are in your 50's. Each case of MS is individual. Doctors can guess how fast it will progress but they do not know. Cancer is the same. I am supposed to be dead but I do not play by the rules.

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