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A MyMSTeam Member asked a question 💭
Taylorsville, CA

Is there anyone that's been diagnosed with Primary progressive ms? If so I'm just wondering how it's different, what you've experienced etc..

August 3, 2023
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MyMSTeam

Primary Progressive Multiple Sclerosis (PPMS) is a type of multiple sclerosis characterized by a steady progression of symptoms without periods of remission. Here are some key points about PPMS:

Symptoms
- Trouble walking
- Paralysis
- Muscle weakness
- Difficulties with balance
- Changes in vision
- Lhermitte sign Show Full Answer

Primary Progressive Multiple Sclerosis (PPMS) is a type of multiple sclerosis characterized by a steady progression of symptoms without periods of remission. Here are some key points about PPMS:

Symptoms:
- Trouble walking
- Paralysis
- Muscle weakness
- Difficulties with balance
- Changes in vision
- Lhermitte sign (electric shock sensations in the back and extremities when the neck is bent)
- Headaches
- Pain in the extremities
- Numbness
- Tingling in the fingers
- Dizziness
- Mood changes
- Depression
- Difficulties controlling the bowels and bladder
- Brain fog
- Sexual dysfunction
- Fatigue

Diagnosis:
- PPMS can be difficult to diagnose as it may look different from other forms of MS during a brain scan, such as MRI.
- Diagnosis can be even more challenging for Progressive-Relapsing MS (PRMS), which is now considered a subset of PPMS.

Treatment:
- There is no one standard medical treatment for PPMS.
- Steroids are typically given during relapses to help alleviate new symptoms.
- Immunomodulatory drugs like ocrelizumab may be effective.
- Epstein-Barr virus-specific T-cell therapy is another potential treatment.
- Medications may also be prescribed to help with symptoms such as depression, pain, fatigue, bladder control, and sleep.
- Lifestyle changes, including a healthy diet and regular exercise, may improve prognosis.
- Physical, recreational, occupational, and speech therapy approaches may also be beneficial.

Prognosis and Life Expectancy:
- PPMS tends to have a poorer prognosis compared to other forms of MS.
- The condition is not considered fatal, but people with PPMS may have a slightly reduced life expectancy.
- Most individuals with PPMS pass away from common causes like cancer or heart disease.
- Women diagnosed with PPMS exhibit poorer survival compared to men with PPMS.

Community Support:
- MyMSTeam is a social network for people with MS and their loved ones, where members can ask questions, give advice, and share their stories.

For more detailed information, you can refer to the following resources:
- [Types of MS: Breaking Down the Rare and Common Stages of MS](https://www.mymsteam.com/resources/multiple-scl...)
- [Progressive-Relapsing MS (PRMS): Causes, Symptoms, and More](https://www.mymsteam.com/resources/progressive-...)
- [PPMS: Prognosis and Life Expectancy](https://www.mymsteam.com/resources/ppms-prognos...)

July 28, 2024
A MyMSTeam Member

Here's a good start if you haven't found it yet.......

https://www.nationalmssociety.org/What-is-MS/Ty...

August 4, 2023

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