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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMSTeam Member asked a question πŸ’­
Tonawanda, NY
July 22
 · 
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A MyMSTeam Member

@ STewartL.
That is why I wrote. We need to understand the whyband how this can happen. We are not alone. But I do know this was not intentional or malicious. The
Neurologists who I met made every effort to meet my needs were understanding.
I have been curious about the long term effects of the DMTs (in my case largely Betaseron and Avonex)
The MS Society was supportive and willingly provided me with studies done.
Howvis your journey going now?
Jeri

July 23
A MyMSTeam Member

Sorry robbing. Can't help you with this one. But there is a section above that can help you
Many blessings πŸ™Œ πŸ™Œ 🌿

🌿🌿

July 22
A MyMSTeam Member

@A MyMSTeam Member Thank you for your comment/reply. As I am also someone who was repeatedly un/mis diagnosed for many (~40) years I appreciate reading the input of others who have taken this same journey and gather our collective knowledge and snowflake life insights!

July 22
MyMSTeam

That's a really important question, and it's understandable to want to connect with others who may be experiencing something similar.

Generalized Cerebral Atrophy (brain shrinkage) is something that can occur with PPMS. In PPMS, the central nervous system experiences ongoing damage, and brain volume loss is actually one of Show Full Answer

That's a really important question, and it's understandable to want to connect with others who may be experiencing something similar.

Generalized Cerebral Atrophy (brain shrinkage) is something that can occur with PPMS. In PPMS, the central nervous system experiences ongoing damage, and brain volume loss is actually one of the key factors that doctors look at when predicting long-term outcomes. While PPMS tends to cause more lesions on the spinal cord than in the brain, brain changes do still occur. Some of the symptoms that can be linked to these brain changes include:

- Cognitive difficulties like brain fog
- Trouble concentrating or remembering things
- Mood changes, including depression
- Balance and coordination problems

It's worth having an open conversation with your neurologist about what this means specifically for your situation, as progression and symptoms vary greatly from person to person.

Many MyMSTeam members have shared similar experiences navigating complex PPMS diagnoses β€” you're definitely not alone in facing these challenges.

July 22
A MyMSTeam Member

Robbir. A nd CR. No nolage after this cat scan a n D. MRI I MIGHT
WAITING ONreprts

July 28

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