Hi all, I’m looking for some advice. I was dx with rrms in 2013, after a pretty bad relapse and positive MRI and lp. I am currently taking gilenya and am still relapsing. I was recently dx with a blood clot on the lung and am now taking wafrain. One of the many symptoms I’ve always had right from the beginning, is headaches, I don’t mean a little ache, full on blinding headaches, sometimes three times a wk. always been told by the neuro they’re unlikely to be related to the ms. Which I find odd as I know others who suffer too. Somebody suggested to me that maybe my ms isn’t ms but actually hughes syndrome? I’ve read a bit up on it but not sure I’d have had the lesions on the brain or the positive LP? Also I did miscarry a child once, but went on to have two perfectly healthy children. So my question is should I forget about this, I mean neuros don’t dx ms lightly do they? Should I mention it to my neuro? Or should I be concerned? Many thanks for taking the time to read this.
Hiya,
The ‘somebody’ that suggested Hughes Syndrome rather than MS …are they medically qualified (…at least on a par with a neurologist) enough to legitimately question your diagnosis ?
If so, it may be worth discussing this with your neuro and insisting on a second opinion !!
If not (…and I’m sure they have the best of intentions at heart), second-guessing a professional’s diagnosis…??
From what I’ve just read about Hughes Syndrome, it seems to center on blood-clotting. Very unpleasant no doubt, but it seems a lot more focussed on one issue, when MS encompasses many different issues.
It does sound like your ‘somebody’ is zeroing in on one particular aspect to question your diagnosis. Not helpful, accurate or legitimate, in my opinion !!
What do YOU think ?!!
Dom
Hi Dom Thanks for replying. It was a nurse at the hospital who mentioned it, just asked of I’d ever been tested for it. I honestly have no idea?! But since then it’s been on my mind. I don’t know what I think about it, I didn’t have much faith in the neuro that diagnosed me and have since switched. So if I were to bring it up, Which I’m undecided on, it’s going to make getting a straight answer harder I’m sure! It does seem possible having read up on it, hughes can mimic ms very well and now with the blood clot?! However I’m just speculating at this stage. Just wondered if anyone else has had a similar experience??
Hi
I was DX with ms many moons ago, had PE’s (blood clots on lungs) and have taken warfarin ever since.
At the time the neuro done blood tests for Hughes, and I had it done twice, but it was negative both times, so that idea was thrown out the window.
Its entirely your decision whether to ask questions or not, but it is possible to have both.
Whatever you decided, I wish you all the best.
Pam x
Hello anon
It is possible to have both conditions. There is a link with miscarriages and hughes syndrome, so I can undertand with your medical history, that you are rightly concerned. Yes, definitely mention it to your neuro, if only to put your mind at rest.
I suffered with chronic headaches and migraines for about two years before being diagnosed with MS. It never entered my head that I may have MS. I know I don’t have hughes syndrome but you are flagging up some problems that could relate to the condition.
Good luck xx
Hiya.
I was told by a medic that when we are tested for MS the test for Hughes is done at the same time. The professionals are aware of the comparisons so do the test at the same time so that a definite diagnosis of MS can be made.
Shazzie x
Thanks Pam and Blossom. I didn’t know you could have both at the same time, that’s interesting. If it’s a specific blood test that dx’s it then I would of thought it would have been ruled out at dx stage? Maybe it’s not routine? And I was never asked about failed pregnancies. I think I will just ask, no harm In that is there? Like you say blossom it might just put my mind at rest. I’m extra stressed with it all as my INR is not stabilising at all. Just don’t want the neuro to think I’m doing his job for him. The neurologists (ones I’ve met anyhow!) tend to have large egos and don’t take kindly to laymen having opinions! Thanks again
[quote=“Shazzie”]
Hiya.
I was told by a medic that when we are tested for MS the test for Hughes is done at the same time. The professionals are aware of the comparisons so do the test at the same time so that a definite diagnosis of MS can be made.
Shazzie x
[/quote] Thanks for this Shazzie, must have been posting at the same time! I think I’ll just ask for confirmation it’s been excluded, for the sale of my sanity!
Prob best. Not sure if it is a general thing or whether it was just mine. They did menion it though.
xxx
This is 2014 and a good neurologist or any doctor for that matter, should not mind any patient asking questions about their own health. If they do have a problem then they are not much good. It’s not so much what you ask but how you ask!!!
I have a friend with Lupus, who consults professor Hughes in London privately. If you ever need to private message me in the future, then feel free to do so.
Good luck xx
I believe there’s a blood test for Hughes Syndrome - no harm is asking for one - I did and it came back negative.
I’m always very polite (I think anyway!), just feel he finds me an inconvenience every time I see him! Perhaps that’s just his way. Seeing him Wednesday so won’t have to wait too long. Thanks for your offer blossom I will bear it in mind. X
I do suffer from pain like migraines in one eye everyday and gives me headaches too, i am on very strong drugs to control a very high does of Gabapentin, but this is MS. I hope you get your answers soon its not easy living with pain 
the key thing that no one has mentioned is that can you have a positive LP and MRI for Hughes.
You can have a positive LP if you dont have MS. This is far more common than having a negative LP and having MS. Because of a high chance of having a false positive LP (ie positive when you dont have MS) is why the LP is not 100% accurate.
I dont know about lesions on MRI though. I would be interesting to see if people were tested for Hughes after a positive MRI or not.
One miscarriage is really not uncommon given that in all people 1 in 5 pregnancys will end that way, albeit mostly before the person has realised that they are pregnant.
Moyna xxx