New diagnosis - not sure if there is something else too.

[CBooker]

I was just diagnosed a week ago. I have Raynaud's, always cold hands and feet but never thought anything of it. This summer I started experiencing pain in my lower right leg and now the pain is spreading and it feels like my brain hurts too. (different feeling than a headache, often intense and fleeting and sometimes only on one side). I lose my balance a lot and lately forget everything, can't even have a normal conversation because I can't recall words. I sometimes have pain where it feels like my organs are throbbing too. Do other people experience this? Or is there something else?

[MaryF Administrator]

Hi and welcome, where are you located? Do you have a Hughes Syndrome/APS specialist? Also it is important to check your D, B12 and Iron levels plus your Thyroid as all these things if not quite right can add to how unwell you may feel at certain times. MaryF

[CBooker in reply to MaryF]

I am in NJ. We have checked all of those things and also ruled out RA, lupus, fibro, MS, ALS, etc.

[HollyHeski Administrator]

Hi and welcome. Its quite common to have more than one autoimmune disease - Im presuming you mean youve been diagnosed with APS/Hughes?

What treatment are you being given? - the key is anticoagulants.

Where are you based so we can guide you to people & specialist near you.

[CBooker in reply to HollyHeski]

Yes - APS which was surprising because it really seemed like MS but the scans were normal. Doesn't look there is any other autoimmune things happening as of now.

I am located in NJ.

[HollyHeski Administrator in reply to CBooker]

Did they put you on aspirin or warfarin etc?

Wittycjt can help direct you to a specialist, which is really important.

Once you get your blood thinned I am sure you will feel a lot better.

[CBooker in reply to HollyHeski]

Not yet - I just found out late last week, and I had a follow up with my neurologist yesterday and they wanted to wait for that.

[Wittycjt in reply to CBooker]

What are they waiting for? Have you had any clots or dvts? You need anticoagulation, or at least baby aspirin if not contraindicated

[Wittycjt in reply to CBooker]

google: “ APS: what Rheumatologists Should know about Hughes Syndrome” . It’s an article by Prof Graham Hughes, the man who discovered this disease.

It provides information and treatment ideas. Please read it, it’s a very informative article. Do you have a rheumatologist or hematologist?

Many of us on here do not find a neurologist to be that knowledgeable about Hughe/ APS and have not received the best treatment from them. Again, good luck, Cindy

[CBooker in reply to Wittycjt]

I have a rheumatologist who found it. I am waiting to get into a better one. Doctors originally thought it was MS so that's why I was seeing a neurologist.

I will definitely look up the article. Thanks!

[Lure2 in reply to CBooker]

You can find it on one of our posts from Wittycjt today. Put up by APsnotFab as an answer to the post.

Kerstin in Stockholm

[Wittycjt]

Welcome, I’m from NJ too, Cindy

[Lure2]

Hi,

You have got very good answers now I think!

They also have "ruled out" a lot. HS/APS can go with micro-emboli and micro-clot (I have those) and they are not seen on a Scan as they are so very tiny but do harm to the body.

Did they say you had a diagnose of HS/APS then?

Best wishes from Kerstin in Stockholm

[CBooker in reply to Lure2]

Yes, I tested positive in multiple blood tests. thank you!

[GinaD]

Are you on a medication for your sticky blood? such as asperin, warfarin, etc? As Kersten pointed out, we can feel and experience the consequences of mini clots which are still too small to show up on a scan. In my case, despite being on warfarin, bad hip arthritis (source of inflammaaion) triggered my crazy immune system to form micro clots in and near my hip — which included my spine. I was getting loads of lower back issues. Doctors did not believe me, even when I presented charts showing a corrolation between a higher INR and more function/less pain. Eventually, I got the hip replaced and the lower spine/back issues evaporated. Now thre knee arthritis is causing (?) similar regional cramping and pain. The knee is the original culpret as I broke it at age 8 and — amazingly since Dad was a doctor — it was never treated and so the patella healed with an abrasive bump which caused knee pain, which caused the compensatory gait, which wore out the opposite hip, which triggered more miccro lcots. .. . Sigh.

But again, you may never find a doctor who agrees with you, but many of us have noted that “unrelated” cramping,, headaches and balance problems go away when the blood is thinned to the ideal state. For those of us who have had a history of arterial clots such as mini “clotting” srokes and TIAs, , our blood must be “thinner” then those with venous clots.