I have primary progressive MS (PPMS): How do you cope?

Posted by hansa @hansa, Feb 22, 2023

Any suggestion how to cope with it?

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@hansa, I see from your previous post in the Multiple Sclerosis (MS) - please introduce yourself discussion that you are looking for any suggestions on how to cope with extreme fatigue and numbness in toes and fingers from the PPMS. While we wait for other members with PPMS to share their experience and what helps, I thought I would share this information from the National MS Society in case you haven't already seen it.

--- Numbness or Tingling: https://stage.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Numbness
--- Fatigue: https://stage.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Fatigue
--- Other symptoms: https://stage.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms.

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I got diagnosed late with primary progressive MS. I am in a lot of pain. Feet feel like stone(pain), arms and legs feel like they’re sunburned and major fatigue. I am currently on Ocrevas infusion. Any help would be appreciated.
I was thinking about trying Neurovital neuropathy, supplements anyone had any luck with these please point me in the right direction, Ucsf is not helping much

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Profile picture for kendoe @kendoe

I got diagnosed late with primary progressive MS. I am in a lot of pain. Feet feel like stone(pain), arms and legs feel like they’re sunburned and major fatigue. I am currently on Ocrevas infusion. Any help would be appreciated.
I was thinking about trying Neurovital neuropathy, supplements anyone had any luck with these please point me in the right direction, Ucsf is not helping much

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Welcome @kendoe, Sorry to hear that you aren't getting much help at UCSF. I am not familiar with the Neurovital neuropathy supplements but thought I would tag @hansa and @angielewis1959 who mentioned being diagnosed with primary progressive MS to see if they may have some experience to share with you.

You may also be interested in scanning through other discussions on Connect that mention progressive MS. Here is a search link that lists the different discussions and member comments - https://connect.mayoclinic.org/search/discussions/.

There are a few member discussing Ocrevas in the following discussion that might be helpful:
-- Ocreves Zunovo for Relapsing Remitting MS: https://connect.mayoclinic.org/discussion/ocreves-zunovo-for-relapsing-remitting-ms/

Did you mean NeuroVite brain supplements when you mentioned Neurovital neuropathy supplements?

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