New here and have a couple questions. Thanks!

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

9 Replies

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  • 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

  • Thankyou will do

    CA x

  • 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

  • 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

  • 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

  • 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!

  • Thankyou x

  • Hi CA - Welcome to HSF! Im glad you have landed on here because I do think we can be of some use.

    As Mary has said taking all the useful bits from the HSF website that match your symptoms does help the GP and also letting them know about your Mum and the rest of the family connections with the condition - Also the thyroid connection. I would also make sure you take the page on the correct tests that your GP should do just in case they decide to do that before referral. That way you will be armed with the correct info.

    Many people have little or no symptoms and some have many, we are all different but the key is to get the condition diagnosed, get under expert knowledgable care so that you are being treated properly to avoid the chance of getting a clot. If you can do that then you can carry on without it impacting on your life too much. Maybe just an Aspirin a day. So please dont dread it too much, it can be a good thing rather than walking around with something going on in your body that you are unaware of until it hits like your Mum.

    Good Luck on Friday - Please let us know how you get on. xx

  • 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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