Sticky Blood-Hughes Syndrome Support
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Symptoms fluctuating


I am fairly new to all this as I was only diagnosed a couple of months ago. I have had a diagnosis of MS for 10 years and my mobility has been badly affected by it to the point of needing a scooter and sticks etc. After being on Clexane injections for a couple of weeks my mobility improved to the point that I have been walking with no aids at all for the last few weeks the first time in four years!!!!! YAY!!!!! And I have been feeling really well for the first time in ages.

But now my question. Over the last week the stiffness in my hands and the pain and weakness in my legs has started to return and I am limping again and finding it harder to walk once more. I am feeling quite "MS"ish again but I have not been Relapsing Remitting MS for some years now, having gone progressive.

I had put the improvement down to the heparin as did the haematologist so I am wondering if symptoms fluctuate in APS as they do in MS? My neuro and haemo are now thinking that the MS was probably never as severe symptomatically as it was appearing but was being masked by the APS. But it is very disillusioning to have all my symptoms reappearing after feeling so well.

Do other people get fluctuations in their symptoms? And how do you deal with it? Such a steep earning curve. I had got a handle on having MS. I feel like I have to start a square one again.



10 Replies

Hi hon

APS and MS do overlap a lot in symptoms and having been on clexane myself for a few weeks have found mobility better etc. we do have times when our APS flares for some reason, then levels off again, I usually give in and rest when it does, if I don't then I know I'm gonna pay.

It's hard to do but pacing ourselves and listening to our bodies, then giving in and resting when we need to.

Hope you're feeling ok today.

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


Thanks Sheena. So back to the rest and don't over do it routine as I am used to doing with MS then :( Bother. I was so excited at being able to walk for the first time in ages that I have gone pretty wild in the last few weeks and probably am paying for it! Aaaah, well, I guess there is no such thing as a true miracle cure ;) but I have to say I am pretty impressed with the improvement I have seen on Clexane. I'll take it easy and see how I go.

Do you find you feel very stiff in the joints; fingers and knees for example, when the APS flares? I also get bouts of serious headaches/migraines that will last for a week at a time and a weird rash/ blotchy skin on my forehead with this. None of which is typical for MS so I am starting to wonder if it is related to the APS?

Thanks again for your reply,



I have joint pain/stiffness when I flare. It is also common to get migraines when flaring, and many have stated that proper anticoagulation levels have helped this. The rash could have been livedo which is also common to APS.

I was originally thought to have MS since my APS presents with numbness/tingling in my extremities, joint pain, fatigue, vertigo, and lack of concentration/brain fog. The Hughes Foundation website lists many symptoms and complications, many of which I am "lucky" enough to have :( You might find the information there quite helpful.


Hi B,

I actually understand how you feel. I was diagnosed with MS 9 years ago. I have been in a wheelchair since 2010 when I collapsed, reassured by the A&E team that I was not to worry, I had not had a stroke. "it's just an MS relapse". My MS diagnosis became secondary progressive.

Then 18 months ago I suffered an arterial clot in my leg, then a TIA and massive pulmonary emboli. An MRI scan showed that I had indeed suffered a stroke, age 33.

I've collected a few more auto immune diseases since, and I have no idea anymore what symptom is what, however I knew my old friend MS well before the others muscled in, and sometimes I have days when, like you I feel very MSy!

If you feel like me it's like thinking you knew what was going on with your body, it had a name and to some extent you could manage that. then another auto immune comes along and symptoms can be similar. It's like having to get to know yourself again. Not knowing which forum can help with a symptom, feeling like nobody else can ever understand anymore because, because, because. I'm tired, I hope I made sense



You have nailed it!!!!! That is exactly what it is like :) Thank you so much for putting it into words. It is reassuring to know another person out there is experiencing exactly the same thing as me...

I saw my neuro today for the first time since starting on the Clexane and since my Haematology appointment and she now thinks I DO have both illnesses. So I am now collecting diagnoses. I had been hoping to lose the MS one but no such luck lol

Toooooo confusing and after the drive from the country into the city and back and all the faffing around at the hospital I am now completely knackered :(

Thanks again for your reply



You're welcome. I'm pleased to be able to speak to somebody who is also complicated.


LMAO :) Don't you hate it when Drs look at you and say, "Hmmm, you're an interesting case....." Aaaaaaghhhhhh!!!!!!!


You're welcome. I'm pleased to be able to speak to somebody who is also complicated.


What does an APS flare feel like? How do I know which symptoms are lupus "like" syndrome, APS, anaemia (of varying kinds) and possibly also Sjorgens?

The most disruptive thing I have on a day to day basis is dystonia, in that I get attacks every day. I had to give up my photography degree after the first year, very upsetting. I worked like stink, got a distinction, and then had to stop studying. I couldn't do the long days in Uni.

I think I still know what MS feels like, although I expect physically they all feel similar - weak, tired, sore, frustrating, painful, limiting and just a bit out of control!

I am so confused about my self destructing body!

Only time I have ever knowingly had APS symptoms has been when I get a clot, though saying that when my INR is 3 or lower I feel dreadful. And this beautiful sun makes patches on my face rather like an uneven suntan, despite the factor 50! Without the factor 50 though I get sores, so blotches win.

I hope nobody else in the world has all of these combinations of things I have, but at the same time, if there was somebody I would dearly love to be able to speak to them, to share experiences, to discuss things that help and also have a good old moan!

I am allright in so many ways, I have so much that's wonderful - I just wish I could do everything. It's strange, I have greater ambition now than I ever had before I was ill. Not that I can get a job, but I want to BE somebody without these diseases tripping me up just for fun whenever I try. I don't want them, they can just go away now!

If only.

You're all lovely, thanks for reading my rant x


Oh yeah...... I can completely relate to what you are saying.

Along with the MS and APS I also have IgA nephropathy, an auto-immue kidney disease and like you I had to quit my degree course in Nursing after getting destinctions because a full day at Uni was too much for me too :(

And I also suffer from very severe hemiplegic migraine which presents with stroke like symptoms. And to further complicate things I broke my neck at C3, 4 and 5 a few years ago in a horse accident and although the neuro surgeons were utterly brilliant and saved me from being a quad by bolting my neck back together and doing also sorts of brilliant surgery, I do now have an unstable cervical neck injury and it too can cause neuro symptoms.

So I never know quite what is causing my various weird problems either and the trouble is neither do the Drs which means I always need to be admitted to hospital and have the full battery of tests and scans done to rule out every nasty possibility every time my body has a melt down. Which is constantly so I spend a lot of time in hospital. Which as a single Mum is hardly ideal.

I wish mine would b*gger off too. And thanks for writing your rant :)



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