Coping with a whole host of problems …

[geek84]

Good Morning

I hope you’re all well and please let me know if this is the wrong forum for posting my question.

I am a male and approaching 50 years of age. I was born with a whole host of problems:

Cervical Myelocele

Meningo Myelocele

Right Convergent Strabismus

Deformity Of Right Foot

Spinal Deformity

Operation for Squint

Occipital Meningocele

Right Hemiparesis

Incoordination of right Hand

I have lived with all this since birth. I have noticed that some of these symptoms have started to increase and would very much like to get in touch with other individuals (for moral support) who have also got some of these problems.

I tried to look online but couldn’t find any relevant groups or online chat groups. Does anybody know of any Facebook groups, meetup groups/events, online groups/chats where I could meet or talk online with other individuals who suffer the same problems?

Thanks in advance for your responses.

[VivienneWaterworth]

I'm not sure whether FND diagnosis for you, however you could benefit from being in our community. There are a lot of Facebook groups for FND Hope, plus some set up specifically for individual countries.

Check out their website: fndhope.org and also neurosymptoms.org (owned by one of the top neurologists in the world in the area of Functional issues (Dr Jon Stone from Edinburgh).

One thing that might be relevant is that a number of people with a functional problem of one kind or another ALSO have the actual disorder that the Functional symptoms mimic. e.g. epilepsy and non epileptic seizures, dystonia and functional dystonia, etc.

So it is possible that on top of all the physical symptoms you've had since birth, you also now have some (dys) functional symptoms. I hope you can find answers to your all of your complicated medical issues. The more issues someone has, the exponentially more time it takes to sort them all out.

I've been a problem solver in the computer industry for 30 years, so I've had a lot of experience with problem solving. I hope you can find someone who can look at you as a whole, then gradually assign different symptoms to different causes, and find what's left. That could take a while. All the best.