Multiple Sclerosis (MS) Support Group

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Need opinions

RiS
RiS

I have PPMS and am scared. I know I should call my neuro but want to wait until after the holiday. I do exercise every day and besides having PT twice a week my boyfriend does stretches using my legs  every day (I sit in a wheelchair all day). I still feel like I'm getting worse-weeker. I don't feel as strong as I did. I do have an issue with getting a new power wheelchair which is higher and my bed is in the process of being highten and I just got a higher raised toliet seat but still need either my boyfriend or aide to help me either on or off - whatever I can't do at the time. Before I RARELY needed help. Am I just getting worse?

GreenPureHealth
GreenPureHealth
Hello -- I can imagine how scared you must feel! I'm sorry you are experiencing this. When our body starts to have a mind of its own and we feel totally out of control, there is nothing that makes us feel more helpless and afraid. I don't know what exactly is happening to you, but I have been navigating through my MS journey for nearly 20 years now. Have you read the book Curing the Incurable by J. Riggs? It was my light and hope during my darkest days. Because of that book I learned what my triggers are and today I am living medication-free. My every-other year MRIs show no new lesions - nutrition has literally saved my life! Are you open to trying what I did to see if your body responds well? To learn what is triggering your exacerbations? I'm not a magician, but I truly believe that the foods we eat can hurt or heal our bodies. I do wish goodness and strength for you. x
(If you want to talk off-line, you can find me on facebook @ GreenPureHealth and we can chat more there.)
Anne8
Anne8
Hi RiS-
you have PPMS? Weird I didn't know that (I do, and there are so few of us!). I'm not sure what to tell you. . .whether you are getting worse or not, I'm not sure. All I know is, you need to fight to keep your independence as much as you can! I myself am cautiously searching for SOMETHING or SOMEONE to help me try to recover a bit of muscle. I stubbornly feel it's doable (I have to!), but I am trying to find a professional I can afford who is skilled enough/experienced with MS. Here, we have socialised medicine, but it took me two years of asking to finally get 10 hrs of physio, so I'll have to go private. But if I have to pay 30/hr I sure as hell want a professional who has worked with MS. Just today I fell when I was alone & luckily my 17 year old answered his phone & came to rescue me off the floor (my core muscles are shot!)
Keep fighting the MonSter, & good luck!