Ever heard of Hughes Syndrome?

[Nanners123]

I just came across an interesting article in the Magazine New Pathways, the MS Magazine of Choice published in the UK. Here is the link: http://www.msrc.co.uk/downloads/npwm_2003_0018.pdf

Basically it talks about some research that is or was being done around the world (St. Thomas, Japan, France, Italy, Israel and Spain) looking at this Hughes Syndrome and MS. The article talks about how an estimated 2% of people diagnosed with MS may in fact have this other syndrome.

I stumbled across it because I received my blood work results today and found out that my Platelet level along with some other levels were low and I googled low platelet counts. This magazine came up in the search.

I am not sure what to make of it and wondered if any of you have heard of this magazine or this syndrome?

[Nanners123]

This link expains the syndrome in more clear cut manner. The link is from the Multiple Sclerosis Resource Centre

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=736  This link says that up to 5% of MSers can actually have been incorrectly diagnosed. I have copied some of the article:

"Up to 5% of those diagnosed with MS don't have the disease at all. They have something called ‘Hughes Syndrome’, a hidden blood disease which in some ways mimics MS. It is also known as "Sticky Blood Syndrome".

This finding from a study by a leading team of British researchers at St Thomas’ Hospital in London. Instead of having MS, these patients could be suffering from this relatively new disease which mimics some symptoms of MS.

Like MS, Hughes Syndrome can affect mobility, memory, the speech and the nervous system. But the differences. Hughes Syndrome is easy and cheap to treat.

What is Hughes Syndrome?

Hughes Syndrome is the common autoimmune disease that makes blood more sticky or thick and therefore more prone to clotting in both veins and arteries. Lack of awareness of this condition means it is often missed or overlooked.

Sticky blood can affect old and young, men and women alike and is found in all countries. No one knows what causes it although there is evidence that there is a genetic link.

Current research shows Hughes Syndrome is responsible for a fifth of strokes under 45 years, a fifth of cases of deep vein thrombosis, including so-called ‘economy class syndrome’. It is the cause of 1 in 5 recurrent miscarriages. Hughes Syndrome can also mimic Alzheimer's disease, ME, and is linked to migraine. If it is left untreated sticky blood can kill.

MS the wrong diagnosis?

The St Thomas's Hospital found that up to one-third of patients coming to their clinic did not have MS at all, but Hughes Syndrome.

Doctors there were seen numerous patients who had been told they had MS and were confined to a wheelchair having lost the use of their legs. They were subsequently re-diagnosed as having Hughes Syndrome. Within weeks, and in some cases days of starting on the blood-thinning drugs they were out of their wheelchairs and walking.

Prompted by a growing number of patients coming to the clinic who had been told they had MS when they didn't, the team at the Rayne Institute questioned a sample of 250 patients with Hughes Syndrome. They found that almost a third of them had originally been told they had MS.

Dr Graham Hughes, the British physician who first identified the condition (hence the name) is concerned by these findings. Dr Hughes says sticky blood is dangerously under-diagnosed and believes there is an urgent need to raise levels of awareness among the medical profession and the public.


“The study makes us feel very strongly that there is a group of MS patients who in fact have a different disease which is treated totally differently and very successfully.

What concerns us at the clinic is that we do not know how many patients amongst the wider population remain undiagnosed. We are just one group of doctors at one hospital.

If you consider that we have almost 900 patients who have Hughes Syndrome, that means 300 were told they had MS. If you broaden the picture you can soon see how this could affect a large number of people.”


Dr Hughes wants to see more research to establish how the people of being wrongly diagnosed.


“We believe there is an urgent need for a major collaborative study of the link between the two diseases. Doctors need to be more aware of Hughes Syndrome can be difficult to distinguish between the two conditions.”


How Hughes Syndrome mimics MS

Symptoms include problems with:

Mobility - difficulty in walking, tripping and dragging foot
Vision - double vision
Tingling feelings
Fatigue
Balance
Speech
Memory

How can you tell the difference between MS and Hughes Syndrome?

Dr Hughes says there are clues that will help point to sticky blood:

recurrent headache or migraine
previous thrombosis
recurrent miscarriage

If any of these are present then the blood should be tested for Hughes Syndrome. Dr Hughes and his team have developed two inexpensive blood tests that are available at most laboratories and will show the presence of sticky blood."

[sllowe]

Nanners, I sure hope you find the cause of your low platelets.  

Oh boy.  I'm so glad you posted this, however, for me, it gives other reasons to 2nd guess dx's and prompts hesitation to meds (something I've really struggled with).

So, the questions that come across my mind are:

  - Is Hughes tested as one of the mimics of MS?
  - In Hughes Syndrome, do people acquire demyelinating plaques consistent w/MS in the brain and spine?
  -  What labs should be run to rule Hughes in or out? PT? PTT?

(Not posing these questions specific to you, just questions to throw out there to the forum regarding the syndrome and mis-diagnosis).  I will read the link.

Be well,
SL

[Nanners123]

The first link that I listed stated that white spots on the MRI show up in Hughes as well as MS. Doctors are not yet routinely testing for Hughes yet from what I gather. The blood tests that check for it are Anticardiolipin Antibodies and Lupus Anticoagulant.  From the article it says:

"If you have Hughes it means that your immune system is producing protiens or antibodies that make the blood far more sticky than usual"

[Quixotic1]

Whenever we have talked about the mimics and the blood tests needed to  rule them out I have ALWAYS listed the antiphospholipid antibodies, of which the anticardiolipin antibodies are part.  The Lupus Anticoagulant antibody is not something I know about.  One of our members here has antiphospholipid syndrome.

This is definitely something all of us need to look at.  Everybody with symptoms, findings and MRI images suggestive of MS need to have this checked!!!!!!!

My "evil" neuro included it in my profile in 2/2006, so it has been a proper part of the protocol.  Boy, though, it really speaks to seeing specialists.

I do not think it is a disease of demyelination.  Mini clots cause local tissue damage, so the effect is like little, continuing strokes.  Also, this should be checked in all who have had early strokes, MI's and miscarriages.  So the white spots on MRI would look different from classic plaques.

We need to bump this to a general alert.  I'll do it later.  I'm really having trouble with the screen and typing.  THANK YOU, NANNERS AND SL!!!

Quix

[sllowe]

This all raises so much concern with me because in the beginning of my episode, I kept telling the Dr. that it felt like the blood wasn't flowing properly and to my head.  I don't know why it felt that way, but it did, and the re-ocurring sensations that came along w/that were preceded by all the neurological symptoms and head/body disfunction Anyway, I'll get to my question.

I don't see antiphospholipid on my labwork, but I may be missing something in the batch I have w/me.  I do have a a flag on labwork that concerned me.

Lupus Anticoagulant Reflex, directly under that group there is the grouping PTT-LA and PTT-LA Mix (that flagged on mine). Continuing under the list there is Hexagonal Phase Phospholipid, dRVVT and then an interpretation (referencing the flagged PTT-LA and the PTT-LA Mix).
The interp reads:
No lupus anticoagulant was detected.  Results are consistent with the presence of one or more factor-specific inhibitors.  Since the dRVVT was within normal limits, the factors in question are VIII, IX, XI, XII and the contact factors.

I looked these tests up months ago, and was reading into the definitions and from what I found, it seemed as if I should have those other factors (las) run.  And, if I remember correctly it had to do w/thrombrosis time, etc.  

My Neuro said to bring the report to my MD, he was unsure of the interp, but wasn't generally concerned.  My MD was not concerned either.  She did say to me something about "sticky blood" and that I could take a baby aspirin.   So, now with that said, and the mention of sticky blood here, all the hairs on the back of my neck stand up.........

[kimosavie]

I disagree with those that state Hughes is cheap to treat!  The testing alone is very expensive, I am blessed with 3 medical insurances and that has helped, but there are some tests that are not covered.  After you get the surgeries, lengthy hospital stays, and the I know everything physicians and of course send you to the psychiatrist regimes you are pretty spent and so are your famil

My disease started out with a donation of blood to the City of Hope, there when I tried to give blood, my blood was clotting faster than it could go into the blood collection bag.  A physician from City of Hope told me I should check in with my family physician.  I did, he told me in so many words that he never heard of such a thing.  I let it drop.  Then in 1978 I had a terrible auto accident.  I was admitted to the hospital that night I threw a Pulmonary Emboli.  Thank God I was in the hospital.  I stayed in the hospital for 3 months for heparin treatment.  I went home on aspirin.  Over the next 3 years I continued to have DVT's in my right leg and PE's in my lungs.  They tested me then for Antithrombin 3 deficiency 3 times and, each time it came up positive.  In 1980 after the 13th PE, they took me to surgery and performed  a Vena Cava Clipping (not a filter or basket).  I lost the use of my legs for over 6 months.  Even with the help of compressed stockings the swelling and pain was too much.  I was placed on Coumadin starting at 71/2 mg of Coumadin, my INR did not increase, they increased the Coumadin to 10mg my INR went to 2.0, They increased my Coumadin 12 1/2, I not only did not move my INR but I created a very large blood clot under my right knee.  I went home with heparin and Coumadin my INR went to 2.5.  My hematologist was not happy because I continued to have aggravation of old blood clots and continued to create small new clots.  
They placed a Hickman catheter and attached a pump to me and they would pump large amounts of heparin into me.  So much heparin that I began to loose my hair and the migraines became intolerable.  I was also on 15mg of Coumadin.

I fell and the Hickman became clogged and non working they removed it and tried to put in a Shunt Gortex twice, both times they clogged and were not working.

My now I was having terrible migraines, swelling in my right leg and pain around my surgery site of the Vena Cava.

I went to a Vascular Specialist and he began to give me a frozen blood product and heparin which seemed to help some.

My family moved to Topeka, Kansas and they Hematologist ran some test and told me that there was no way I could have Factor 3 deficiency. They did not know what was causing me to clot but I should stay on Coumadin.  We had seen a TV show regarding Hughes Syndrome.  I asked the physician I was seeing if I could have this disease.  I was told they highly doubted it, nor were they concern.  My fault I should have been more forceful.  But I was tired of blood physicians and the attitudes.

In 2003 I was working in Reno, Nevada, I tried to get up out of bed to go to work and could not, and I was taken to the hospital and was told I now had a blood clot in my left leg.  They kept me in the hospital for 2 days and I was told that because they were over loaded and needed my bed that I could be treated at home on Lovenox.  First of all I had never heard of Lovenox and did not know how expensive this drug was.  With my insurance and secondary insurance at that time, the medicine was running me for 1 week $157.00.  I called my husband and he called our family physician.  He told me to get home as fast as I could, but do not fly.  So my family came and got me and we drove in my RV to Topeka where upon arriving I was taken to the hospital and admitted and surgery was performed for 4 days to remove the 14 inch blood clot.  I remained in the hospital for 21 days sent home on Coumadin and develop the pain all over again.  I was tested and found blood clots in both legs.  I was told there was nothing they could do for me except treat the pain.
That is when my daughter contacted NIH and they found some great hematologist that tested me for everything including a Viper test.  I was positive and started on the treatment of Lovenox twice a day.  
While the treatment has helped some, the side effects from the disease and Lovenox has been pretty bad.  Migraine Headaches join pain, leg, calf, and pelvis and neck pain.  I fall and some days I can't walk.  My memory is bad on some days.  
I have been told that Lupus Anticoagulant and Hughes Syndrome have similar symptoms and sometimes they are interchangeable depending on who you speak with.
No one should take these diseases lightly.  My Dad died of a blood clot to the lung.
We have done volumes of research on these diseases.  Kimosavie