New here and have a couple questions.... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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New here and have a couple questions. Thanks!

CarolineAnne profile image
8 Replies

Hello I am new here

I was directed here from people on thyroid uk forum. I have an under active thyroid and have been having episodes of left side weakness/ paralysis and slurred speech and confusion. My Osteopath was concerned that these could be TIAs. I have had two MRIs of brain and spine ( last one was Dec 2012) the results were normal. So I had been looking into hemiplegic migraine. Last week I saw a neurologist who diagnosed Functional neurological disorder!!

I was advised that my symptoms were similar to APS/ Hughes. So I did a little reading and checked my past bloodtests. I have had two positive tests for Lupus anticoagulant ( 06 and 08 ).

I only get these episodes at ovulation and after my period which I thought tied into the hormonal spike causing hemiplegic migraine theory ( as I am 43 and probably in peri menopause )

My mother had a stroke last year at age 64 which was totally out of the blue and I have one cousin with rheumatoid arthritis and lupus and just found out that another cousin has APS/Hughes.

What are the chances that I do/ do not have this. Could episodes of left side weakness happen only at hormonal times with APS??

I do not seem to have many of the other symptoms.

After many years trying to get my thyroid sorted I still can't tolerate thyroxine and I feel such dread at the thought of having another disease. I have an appointment soon with GP to discuss this.

Thank you for any advice you can give me

Carolineanne x

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8 Replies
Manofmendip profile image
Manofmendip

Dear Caroline Anne

Thank you for your post and welcome to our group.

Please visit the Hughes Syndrome Foundation website and print off the information on there and take it to your GP.

Best wishes and good luck.

Dave

CarolineAnne profile image
CarolineAnne in reply toManofmendip

Thankyou will do

CA x

MaryF profile image
MaryFAdministrator

HI there, (again), yes this sounds very much the case, unfortunately time and time again neurologists fail to recognize or even believe this documented disease. Am I right in thinking you are in the Midlands. Please see here our charity website and also a page for medical professionals in your area. If your GP will not refer to them, you can self refer to London Bridge and they will then guide the local NHS, but hopefully he or she will. hughes-syndrome.org/ hughes-syndrome.org/self-he... and East and West Midlands specialists. hughes-syndrome.org/self-he...

Mary F x

CarolineAnne profile image
CarolineAnne

Thankyou Mary

Yes in the Midlands. See my gp on Friday morning so will go armed with all the info. Thankyou for the links.

CA x

MaryF profile image
MaryFAdministrator in reply toCarolineAnne

Good, and tons of articles out there if you need them, if you want any please let me know and will load them up on here for you. Mary F x

momtomany profile image
momtomany

I don't think you'd test positive twice, years apart, and not have the disease. Perhaps you are less mobile during ovulation (I get painful ovulation and just want to lie down somewhere) which is triggering the episodes?

I hope you get real answers soon!

CarolineAnne profile image
CarolineAnne in reply tomomtomany

Thankyou x

CarolineAnne profile image
CarolineAnne

Hello APsnotFAB

Thankyou for the support. You are right of course- it is better to know and have it treated.

Will let you know how I get on.

CA x

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