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dominics
5 months ago

nutshell88
5 months ago

@dominics

Yesterday to went to a professor to help me fixing my pose
Ive never met him before
I showed him some weird abilities of my joints finger are so flexible in rare way he asked for Sectional Images
After he saw result he said you dont have multiple sclerosis you have orphan or maybe he said murphan syndrome he checked how wide i am it was more than my hight
He said who daignosed you rushed the diagnosis and never thought of all syndroms :/ atm i feel !


nutshell88
5 months ago

@dominics yeah i guess be said :

Marfan syndrome (MFS) is a genetic disorder of the connective tissue. The degree to which people are affected varies. People with Marfan tend to be tall and thin, with long arms, legs, fingers and toes. They also typically have flexible joints and scoliosis


stumbler
5 months ago

@nutshell88 , Marfan Syndrome can also affect your eyes.

Would it explain all your symptoms?


dominics
5 months ago

This sounds like as good a reason as any to seek a second opinion. MS can and is occasionally misdiagnosed. Doctors are not perfect.

Orphan syndrome refers to, as far as I can remember, a disease with very little prevalence, perhaps one that it is hard to tie to others. Hence the name.

Overall: having a correct diagnosis is so crucial. As MS is far less common in Saudi there may be an argument to involve medical from areas where it is more often found.

The sharing of expertise and best practice is well established in the medical community. Personally, I’d be after a doctor who immediately engaged with the wider medical intellectual community for assistance.

Good luck.

Dominic


nutshell88
5 months ago

@stumbler
Yeah my corneal problems started with my MS diagnosis 🙄


nutshell88
5 months ago

@stumbler stiffed teeth too..


nutshell88
5 months ago

@dominics
Genetic testing is the key.
I’ll see then if im caring MS or Marfan syndrome. Or maybe both.


nutshell88
5 months ago

@dominics @stumbler
I stayed 8 or 9 years off MS treatments
Nothing happened.
I dont get numbness stabbing electric my neuropathic pain or so i thought is in my knees and leg bones.


dominics
5 months ago

@nutshell88 – I am not a doctor. From everything you say I would imagine that your very first step, before anything else, is to get a definite diagnosis. 2nd or even 3rd opinions are crucial.

Every other discussion is hypothetical, at best. You simply must be certain. As I said before, there ought to be a professional network for the neuro(s) to work in to call upon the expertise of others.

You stand to do yourself a disservice at best or harm at the worst by going down various routes without a certain diagnosis.


arknat
5 months ago

@nutshell88,

Do you have an MRI of your brain and spine ? Do they show lesions active or not ? My diag was based on ON, double vision etc. and my brain MRI’s.

I hadn’t started on DMTs until it showed active lesions on MRI w/contrast a year later after ON and diplopia.


nutshell88
5 months ago

@arknat It does
The professor I met said they must of checked Rheumatism and done a genetic test which I’m planning to do.

@dominics

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