No miscarriages or DVT or blood clots but have confirmed APS and many other symptoms, is anyone else the same and are blood clots likely?

[Kazzapeaky]

These are my symptoms and I would be interested to hear if others have had any or all of these and how they have progressed. I have been diagnosed with APS through two positive blood tests. also borderline idiopathic hypertension, chronic migraine, hermicrania continua and anxiety.

dull headaches most of the time with pulsing noise

Headache particularly (L) temple headache and neck (L)

severe headache or migraine with exercise

Fuzzy head/dizzy-spaced out feeling

Short term memory loss, lose words

Joint pain and stiffness (sometimes debilitating)

loss of hearing (wear hearing aids now)

Short tempered

Extreme fatigue

lethargic

Lack of concentration

Anxiety

Excessive sweating

Leg and foot cramps regularly, diaphragm (bending over)and back and legs during exercise

Aching back and chest pain when walking on occassions

twitchy eye

Mouth ulcers

Urticaria

Skin eruptions on the body

Nostril running for no apparent reason

[MaryF Administrator]

Hi there and welcome, you will find several people on here with a similar profile and I am sure they will introduce themselves. However a couple of things jump out at me, with regards to the excessive sweating/anxiety it would be a good idea to get your thyroid checked, certainly when I sorted mine out and had some treatment, some of my allergies died back, it is so common to have a problem with this when you have APS. Also regarding ulcers and skin eruptions, have your team/doctor checked you for Lupus also. The chronic fatigue is prevalent with APS, and also with a slow thyroid, hard to tell at times where one ends and another begins. I had no miscarriages either, but if you view my profile you will see it was down to my own vigilance and suspicion regarding my relatives who had gone through this with similar symptoms! Let us know where you are located, where you go for your treatment and medications currently tried, as some times fine tuning can occur with other members. Mary F x

[Kazzapeaky in reply to MaryF]

Thank you so much Mary, I am in Warwickshire and I am under a rheumatologist at Coventry University hospital, although she says she doesn't know why I get headaches or dizzy heads and should go back and ask the neurologist but reading up on here and other sites I am sure its the APS. I haven't tested positive for lupus but she says I have APS with lupus symptoms. apparently this happens she says. She only wants to see me yearly and says all my blood tests (including thyroid) are fine and the only diagnosis I have is APS so should be ok with aspirin. I would ideally like to see someone who knows about APS if I can and wondered whether to ask GP for a referral. My rheumatologist does make me feel like a hypochondriac who is wasting her time. Thanks so much for your help.

The medications I am on now and previous I have listed below.

Current medication

Aspirin 75mg daily

Premarin HRT

Vit B12 injections 3 monthly

Vit D (Adcal) x2 daily

Cetirizine dihydrochloride

Lansaprozole

Fluoxetine

Quinine

Previous medication

Prednisolone 30mg down to 5mg

Indometacin 2 x 50mg, 1 x SR 75mg

Acetazolomide

Citalopram 40mg

Ozemrapazole

venlaflaxine

Amitryptiline

[MaryF Administrator in reply to Kazzapeaky]

Thyroid tests are notoriously inaccurate unfortunately, and we do have a list of APS specialists either privately you can self refer to or on the NHS: hughes-syndrome.org/self-he...

It is very important that you receive the correct care and medication, many of us on here have gone to London Bridge, I do not know specifically what will suit you, but somebody who understood more, medically speaking regarding Hughes/APS may well want you on something other than Aspirin after detailed assessments, unfortunately neurologists often do not understand Hughes Syndrome correctly, a regular gripe on this site from our members. All the best Mary FB

[Kazzapeaky in reply to MaryF]

Thank you Mary. I will see if anyone recommends anyone locally they have seen and if not see if I can get an appointment in London. Thanks once again for your help, I will keep you posted and in doing so hopefully help others in a similar situation. KP

[MaryF Administrator in reply to Kazzapeaky]

OK, and do feel free to hand this website to your medical team: If you ring your consultant's secretary she/he may give you their email address, then you can send he website marked for their attention, in case it helps: hughes-syndrome.org/

If you decide to go to London Bridge sometimes you can get a sudden cancellation with Professor Hughes, but if not Professor Khamashata has the shorter list Best of luck Mary F x

Mary F x

[Kazzapeaky]

Does anyone living in the Warwickshire area see anyone in the vicinity who specialises in APS?