What varying ages have people been diagnosed at ....

[goldfinger]

I'm 45 ... Have a possible diagnosis. Of ms hanging over me ..found a link to Hughes syndrome ....given. Me a little. Hope ...last two pregnancies. Ended in miscarriage 8wks and 20....five years ago..any input would be appreciated....

[goldfinger]

I live in Ireland ....i would travel any where in Ireland if it came to being seen ..thank you for your prompt reply...

[ndstephens49 in reply to goldfinger]

Good luck to you!

Nancy in West Virginia

[goldfinger in reply to ndstephens49]

thank you Nancy ...

[ndstephens49 in reply to goldfinger]

Not to beat a dead horse, but, it also just dawned on me that I am double jointed (hypermobile joints). I've read this runs with connective tissue diseases and I think maybe migraines. Nancy

[Lure2]

Hi,

As APsnotFab says; the Neurologists do not "get" what our illness HS/APS is about : too thick blood that has to be properly anticoagulated and at a steady level.

We have found this by own experience but also that the Rheumatologists (as it is a reumatolical illness) and also the Hematologists (as it is at the same time a blood-disorder) have easier to understand and are more often specialized educated in autoimmun illnesses.

Good luck and do not give up before you know for sure.

Best wishes from Kerstin in Stockholm

[goldfinger in reply to Lure2]

thank you for reaching out ....Kirsten....

[Lure2 in reply to goldfinger]

I am glad if I can help you!

You are most welcome

Kerstin

[goldfinger in reply to Lure2]

kerstin ...i read back through some other post ...you say in answering that you too had neurological. Symptoms...can you recall if tremor or weakness to one side was an issue ....thanks

[Lure2 in reply to goldfinger]

When I had my TIAs (they have found I had microemboli) I lost the feeling in part of my body. One time I could not feel the right side of my body (I especially remember not feeling the right part of my tongue but I felt the left part of it). Other time I could not feel the chin or part of my mouth. Perhaps it was weekness also but I am not sure. I think it was. One time I fell on the pavement and hurt my face as I could not reach out to protect it.

You should buy Kay Thackrays book "Sticky Blood Explained". She had those neurological symptoms I had and many members here have thought it a good book also for relatives to understand how it is to live with this illness.

But as we know MS and HS/APS are alike but you should definitely take the help from APsnotFab as she knows what she is talking of and is very helpful indeed.

I read that she has promised to come back to you. So glad if you can get help.

Kerstin

[goldfinger in reply to Lure2]

thanks again Kerstin ...for. Your prompt reply .

[goldfinger]

thanks everyone ...just in a space of limbo ...distressed and feeling lost...just need answers so I can try to start getting. My life back best wishes and thanks again for taking time out to support me 💚 ..

.

[Lure2 in reply to goldfinger]

You will never be alone here as most of our members understand how you feel.

Kerstin

[goldfinger]

that would be great as is I've. Only seen a neurologist ...would appreciate....getting another opinion..

[KellyInTexas Administrator]

Gold finger, not to get too far ahead of ourselves here as you do not have a formal diagnosis of APS/ HS yet, , but it can also mimic non acute transverse myelitis. You hit an area that I still have yet to have a satisfactory answer to.

I was investigated for this after my APS/ HS confirmed diagnosis 6 months ago by a very good MS neurologist. MRI did not show lesions . ( Brain itself, , cervical and thoracic spine.)

It is very common for primary APS to cause balance problems and mimic MS and transverse (non acute) myelitis to the best of my understanding.

One of my consulting neurologists is Dr Robin Brey, with the UT ( University of Texas Health Science Center ) in San Antonio Texas. She ordered in the MRI to investigate MS / Transverse myelitis. She specialized in the neurological manifestations of APS.

She said if the scans were negative, she would explain the alternative reasons why APS caused balance problems, and why it was so common with this disease process, but she never got to it in our meeting. ( I see her again in October, 2017.)

Kersten, or anyone else, lend expertise please?