My story

Hello

I am 41 and a few weeks ago had a funny turn at work which I think was a reactive hypoglycaemic turn. However my doc thought it may be a stroke and sent me to hospital.

The stroke consultant said I either had a stroke or MS no other options considered.

My heart scans were clear

cT scan and MRI clear

I have got borderline diabetic results and have been suffering with the following.

Dizziness

Blurred vision ( this eases with corrected blood sugar)

Occasional ear ache

Feeling of numbness in one cheek (this can be hypo related)

My cholesterol was 4.1

Triglycerides 1.6

Blood pressure averages as 117/65 over a twelve hour day and 99/55 at night

I also have hypothyroidism.

The only negative response I have had is that they have found lupus anticoagulant markers in my ANtiphospholipid test. I know one test does not make a diagnosis but I also know I have some of the symptoms and that as I have an autoimmune condition it is more likely.

I am seeing a specialist general doctor at the Nuffield in Wolverhampton in two weeks but am worrying myself sick in the meantime.

Can anyone let me know what their experiences are and whether I sound typical? What type of things could show a spurious result.

I am gluten free now but eat dairy and am following a low carb high fat diet recommended for type 2 diabetics.

Also does anyone know of a good doctor in this area that understands the condition I am in Shropshire and can travel to Birmingham easily if anyone there.

Many thanks and best of health to you all.

Kind regards

Emma

19 Replies

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  • Hi there and welcome, you don't tell an unusual tale. Where are you located? This will help up to help you. If you have a positive for the test you mentioned then yes you do have Hughes Syndrome, I enclose the other tests they can do, and also a page from our charity website, (I suggest you look through all of the charity pages), which mentions the confusion with MS, sometimes we have people on here who have been originally diagnosed with MS but end up in fact not having this but indeed have Hughes Syndrome/APS: hughes-syndrome.org/about-h...

    Here are the blood tests: hughes-syndrome.org/about-h... I would also suggest they looked at your levels of VItamin D, B12 and Iron also.

    The trio of disease often mentioned by Professor Hughes himself is Hughes Syndrome, SJogrens DIsease and Thyroid problems.

    MaryF

  • Hi and welcome

    My colleague, Mary, has given you some very good advice and I agree with what she has said.

    Best wishes.

    Dave

  • Hi and welcome!

    If I were you I would ask your GP if it is OK to try baby Aspirin in a low dose (75 - 100 mg) When I had my first TIAs or microclots ( I am now on Warfarin) I started Aspirin which may help you to feel better and avoid more clots. It is not dangerous at all but tell your GP first. Take it together with food. Better for your stomach. You can get it without prescription from a Doctor. Just a low dose.

    We often have clots so tiny that they are not shown on a Scan. Try not to worry. It is easy to say but difficult to live up to ..... You are now in good hands and you will probably get a name to a Specialist in your neighbourhood.

    Stay here and let us hear how it goes for you.

    Good Luck from Kerstin in Stockholm

  • Thank you. I don't know for sure yet as my doc was sketchy over the phone. I am based in Telford Shropshire.

    I am very low vit d and am supplementing 800iu per day.

    I am on clopidogrel because of the suspected stroke.

    I take armour thyroid as I couldn't get on well with thyroxine.

    I haven't had the second test yet just a first test and I don't know the full result.

    I also seem to have blood sugar issues possibly hypoglycaemia and have collapsed following carb filled meals.

    I am seeing my GP on Monday and am going to ask her to run the tests again and the vit d.

    Struggling with the emotional

    Side of this as I have two children 17 and 3.

    I have carried two healthy babies, don't have a rash or anything like that. My balance is good one day and not the next.

    I feel scared of everything I eat and drink now.

  • Here is the list of specialists your GP will be able to help with a referral: hughes-syndrome.org/self-he... Please use this forum as much as you would like to, it will help you come to terms with things and gain confidence, from others who have similar issues. MaryF

  • Thanks so much for your help.

  • I suggest you make notes. For your memory and also important to have and show you coming Specialist.

    Tell your GP how you feel and that you are afraid of eating . She must try to explain. Good that you have got Clopidogrel. That is almost the same as Aspirin and is an antiplateletdrug. Feel free to ask questions here. We have a lot of understanding and knowledgeable members so you will not be alone.

    Kerstin

  • Is reactive hypoglycaemia connected to Hughes?

  • Hi again,

    We have Hughes Syndrome here on this site and we are not Medical trained. I have only APS (primary APS) but I have not read or heard of " Reactive hypoglycaemia" together with Hughes.

    APS (Hughes) is a tricky illness and you feel tired, bad balance, vertigo, headaches and these fenomens can change quickly. I saw double also and lost my vision for some minutes on one eye. I fell to the ground suddenly when out walking, but this was before I was anticoagulated.

    Mary says Thyroidea, Sjogrens and Lupus (not Lupus Anticoagulant which means APS) may go hand in hand. Some Neurologists have suggested MS and it has actually been APS. That is why we must have a SPECIALIST who knows exactly how to find APS. This is difficult as it can be mixed up with other illnesses as you see now.

    I suggest you make a list and ask your Doctor as I guess she knows about these symptoms with low blood suger and hypothyroidism.

    Kerstin

  • I can recommend the Rhuematology team at City Hospital, Birmingham, it's headed up by professor Caroline Gordon.

    My symptoms were VERY similar to yours. I have APS, I have been diagnosed as have relapsing polychondritis and Behçet's disease by City Hospital. I saw a number of specialists in my time and Have found the team at City to be supportive and proactive. Good luck.

  • Thanks Lettie I have emailed Professor Gordon today.

    Are you local to the Midlands?

  • I live in Solihull. If you let me know when your appointment is and you fancy it I could meet you for a coffee.

    My advice to you is make a list of all your symptoms no matter how insignificant or unrelated you think they might be and be prepared for a wait, no ones appointment is rushed, it's not unusual for you to be sat around for an hour before you get seen.

  • Tonight my walking is stiff. Sometimes I find my gait is all off. Does anyone know what causes this and should I be concerned as I am on the clopidogrel so thought this would help me. So tired today as went back to work yesterday And I'm finding it solo exhausting x

  • Like you I have APS and also other auto immune diseases.I got diagnosed like you with balance n memory problems and spasms.irratic walking movements.it mirrors MS and in the brain. I am now on warfarin and have accepted things now. I agree with others to write everything down and read it out to your consultant at next visit and good luck

  • Any recommendations on supplements and/or herbal teas/ foods that might help

    Me x thanks so much all. X

  • I have aps and also frequent low blood sugar - I didn't twig the two might be related ... What's the mechanism?

  • Not sure I wondered the same x

  • I second the reccomendation for Prof Gordon and her team at City Hospital in Birmingham. It's a fantastic department. You won't go far wrong under their care.

  • Do you know if they accept private appts as I am worried about timescales

    Of waiting on NHS

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