Concerned for my Father-in-law - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Concerned for my Father-in-law

l0stjuly profile image
3 Replies

Hi all,

I am looking for some insight into possibilities for my sick father-in-law. He was previously diagnosed with late-stage MS, and was just admitted into the ER after having a seizure which left his left leg paralyzed.

The doctors are now arguing between possibilities of MS or Brain tumors (cancer) and can't seem to agree. His MRI shows multiple white "lesions" or cloudy areas that don't look like MS or tumors. Also, all testing has come up negative for MS, but his other symptoms most closely matched so they went ahead with the diagnosis and here we are.

I just discovered Hughes Syndrome, and it sounds eerily close to what he's experienced-

periods of uncontrolled jerking or muscle spasms, headaches, memory problems, dizziness and balance issues, falling, tingling and numbness in his limbs.

I'm wondering if it would be worth it to try to find him an experienced rheumatologist, as I'm not sure the doctors here have even heard of APS.

Kind of grasping at straws, but looking for any kind of hope in a desperate situation.

Thanks for reading,

-Christina

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l0stjuly profile image
l0stjuly
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3 Replies
MaryF profile image
MaryFAdministrator

Hi and welcome and you have done some good detective work, where are you located? The first thing is to be firm, and get them to to the blood tests: hughes-syndrome.org/about-h...

Please explore the charity website and the information is very good and up to date: hughes-syndrome.org/about-h... This link off the website mentions MS.

dailymail.co.uk/health/arti...

Also our list of specialists for the UK: hughes-syndrome.org/self-he...

MaryF

Manofmendip profile image
Manofmendip

Hi and welcome.

I totally agree with what my colleague, Mary, has advised you.

Dave

Lure2 profile image
Lure2

Hi Christina,

I think your father-in-law can be proud to have you. Well done!

Best wishes to your father-in-law and yourself from Kerstin in Stockholm (I have APS)

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