Does anybody know about a link with MS and Lupus, I realise they are both auto immune.
I'm scared - I have to admit it.
I have had serious clotting problems since the end of last year with three hospital admissions. First time an arterial clot - nearly lost my leg. 2nd time DVT, third time major pulmonary embolism in both lungs. Now on Warfarin - I'm really afraid for the future. Any advice appreciated, Im 37 with three daughters and want to look forward to the rest of my life!
Hello Anniesensi
Not surprised that you are a bit scared. As you know Lupus is known to mimic MS and more than a few people have been diagnosed with one and then the other, The clotting problem does sound like APS which some regard as a companion illness to lupus, though in truth it is part of the spectrum of conditions which make up lupus.
I would strongly advice that you not try to second guess what the future holds. Lupus is a very personal thing in as much as we all have our own personal version of it. We share symptoms and collections of symptoms, but the degree to which we each suffer from the different issues is unique, and varies greatly over the course of the years.
You are only 37, and have a long life to look forward to. I hit my health crisis aged 29 and felt lke it was all over, now aged 53, I am in better shape than most 30 year olds.
But; - I will never walk on my hands, run a marathon ( or a mile for that matter ) or do martial arts again. There will be compromises and there will be bad spells, but life is good, and it is my life.
Hi thank you for taking the time to reply, what is APS?
Anti Phospholipid Syndrome aka Hughes Syndrome named after Prof Graham Hughes who did so much work on the illness. He was my first consultant at St Thomas Hospital Lupus Unit in London but I believe works only privately now. There are however many different kinds of clotting disorders, and APS is only one.
It's a scary time before and just after diagnosis. My sister is trying to get a diagnosis for her plethora of symptoms and they are considering (and treating for) chronic untreated Lyme Disease and also MS.
welcome to the forum.
Thank you for your kind welcome.
As I have said to another member, I don't yet know about Hughes - although it seems the most likely problem for me. I do have a fair amount of knowledge gained through experience of MS. and if there is anything I can help you with there, I would be happy to do so. I am sure you have a great deal of understanding also.
I have looked back at my past medical history, and lots of things are beginning to make sense now re. Hughes. Migraines as a young teenager and adult, an episode of Pleurisy and after my third daughter was born a DVT.
Now, it all seems to be accelerating, having had a major arterial embolism in my leg following a minor fall in January which very nearly caused me to need a full leg amputation.Then followed by a stay in hospital when the same leg went purple (the incompetence of the hospital didn't help, I was supposed to have been prescribed fragmin for the following 6 weeks, but I didn't know that until m dr asked how I was getting on with my fragmin injections!) which I think then became a DVT. Then 2 weeks ago I was hospitalised as I have "significant" blood clots in both lungs which are in every area of both lungs.
Now taking Warfarin, I am beginning to feel a little more optimistic about the future. I don't really know if that is misguided optimism, I don't have these results yet. All I do know is I have fairly advanced MS, and have had some very serious clotting problems which can't be explained yet. It was vital to start fragmin immediately and so there wasn't time to do the bloods before starting.
With your Hughes, do you feel constantly light headed? I am unable to get out of bed for any more than a trip to the loo! Might this pass when the clots have dispersed, or is this another thing to deal with?
I'm sorry, this brief was intended to have been brief, but I ended up on a rant! It's just that the Dr's give you a possible diagnosis, and then you are left alone with that thought until they have more news weeks later.
Thanks for listening.
Hi JSue,
Thank you - I have looked up Prof. Hughes, and he is indeed still practicing at St Thomas's.
I discovered that my bank account comes with healthcare cover for diagnostics, so I am hoping it will be enough for me to see him. If I can have a speedy diagnosis it will make this journey so much easier to bear. Thank you.
Hi there my daughter is 26 and has problems for years,before she had her twins 3 years ago she was told she possibly had ms,then a few months after her twins were born is when she started suffering horrendous skin sores from head to toe,along with all het other symptoms,she was dxd with systemic lupus,at that stage it was severe,now to cut a long story short the dx has changed. to possible ms,possible discoid lupus and ms,she has had swelling on the brain and spinal cord,many symptoms over the tests of ms,scarring on the heart valves and kidneys,but none on the brain or spinal cord, now she just had to wait and see,have regular brain,spine and kidney scans to see if she has any more CNS scarring.
This is such a great site for info and advice.
Take care,Sandy.
Hi Sandy,
I don't know anything to speak of of Lupus at present, but I am more than familiar with MS!
This is, I know awful for you as a mother. I have three children myself, all daughters - so I can imagine the fear you must have for your daughter. I know my mum finds my illness very hard to bear and she clearly feels a mothers natural instinct to blame herself. Of course she shouldn't, but it's hard to be rational when your child is ill and there is nothing you can do to make it better.
I am sure you know a lot about both illnesses, but if I can offer any support re. MS I will be happy to offer any support I can to you.
Hi anniesensi,
I just wanted say thank you so much for your offer of help/support re ms, it is so appreciated,also I wanted to say I do hope you get some more answers soon about the APS, you have enough to deal with already ,bless ya! Keep us posted please.
When my daughter was around 11 ,she was dxd with ME,she suffered muscle cramps,vision problems,extreme fatigue, kidney infections,endometreosis,and many more things.Then when she was in her late teens she suffered severe palpitations ,some sort of seisures where she would be near to blacking out! She suffered tunnel vision, nastygmus, when she had a bath she fell asleep in it everytime,then for the rest of the day here fatigue would be horrendous,she had severe brain fog,dyslexia,problems with loss of bowel control,electric shocks in her spine,loss of feeling in arms legs and feet,and so many more symptoms I can not remember,bless her.
On the day in her early 20's when she found out she was pregnant, her g.p was going to send her for a brain scan,but as she had also missed a period, he realised she was pregnant,and told her to wait until after the baby/babies! Were born.
Well to cut a long story short,her pregnancy was wonderful to everyone's amazment,no symptoms to sleek of.
She had the babies ,and a year later ,things started again, some old and new symptoms, then a few months later the skin sores started.
She does see an ms nurse,as we do not have a lupus nurse,but she was told recently her bloodshed etc do not show lupus but her body shows far more ms symptoms.
They now think as she had symptoms for years before her skin probs started, that the skin prob is not related to all her other health probs.
She is having regular scans and blood tests to keep an eye out for swelling on the brain or spinal cord also to see if she developed any lesions.
Sorry for rambling on.
Thank you for your support,I hope that you gets some answers really soon.
Take care,Sandy.
Hi Sandy,
Certainly some of your daughters symptoms I recognise. I apparently exhibit most of what MS has to throw at you!
I know that for MS pregnancy is good for you, many people go into remission during pregnancy, but after 6 months a relapse is likely.
Has your daughter had MRI scans of brain and spinal cord? Only MRI scans can show MS lesions. And has she had a spinal tap? it's not as bad as it sounds, and it is also crucial in diagnosing MS. Blood tests don't show MS up. Only spinal fluid and MRI scans.
Cramps, Kidney infections and vision problems are certainly some of the things that can happen with MS. Extreme fatigue is another problem, which actually can be controlled with medication. For MS I know it's safe - for Lupus I don't know. I hope it is, because I certainly need it and don't like to imaging having to stop taking it.
Please, ramble away. If I can be of support to anybody it helps me too.
Annie.
Hi Annie,I have to apologise,you came here for advice and support and all I have done is ramble on, so please if their is anything I can do to support you ,feel free to let me know.
I can only imagine how your life must be,and feel extremley fortunate that I do not have any major autoimmune diseases.
My daughter has been messed about so much that she has had brain scans in the past,one showed nothig a few years ago,then a few months ago she had another that showed swelling on the brain and spinal cord,no one knows why,lots of steroid infusions later it had gone down.she is due another brain and spine scan hopefully next week, and the bloodshed do not compare with lupus at all that is now why they are going back to possible ms.
No spinal tap as of yet,I thinly it is now a case of wait and see.
Can I ask you what sort of ms symptoms you first displayed? I hope you do not mind me asking?
It must be really difficult to come to terms with such a horrid disease,especially as you are young and have children.
You have certainly been through the mill,will you have to wait long for your APS blood test results?
Hopefully you will hear really soon.
Sandy.
Hi Sandy.
I don't mind you asking at all.
In 2003 I had a caravan holiday. I kept thinking it was tipping, when I came home I still felt that the ground was moving.
Then one of my shins went numb for a while, it passed.
Shortly after I was walking to work as usual, perfectly well the day before, but on this day I was finding I was going to be late to work, and I didn't understand why I couldn't hurry up!, then, by the time I arrived, my right leg was paralysed and I dragged myself the last little way. At that time I was experiencing a lot of migraines.
Over the course of the day, my leg began to respond again, but this took me to the dr, who straight away referred me to a neurologist.
my next symptoms were all patches of numbness which went away and an episode of optic neuritis. Bladder and bowel problems too.
by now my gait was affected and eventually I was walking on my ankles. Fatigue was constant.
I had a serious episode 3 years ago which resembled a stroke - I collapsed outside the house - and then I was diagnosed with secondary progressive MS. and into a wheelchair. Now I have incredible spasms which take my body over - they must resemble seizures...
If I think of anymore I'll let you know. Oh yes - my memory is kapunkt.
Ah bless,you have really been through a very rough time ,you seem to be a very strong minded person,I would imagine this has been a very stressful time for you and your family,it must be very difficult for your children to see their mum go through she a horrid disease.
My daughter is a fighter,she is a kickboxing. black belt and has been since she was very young she had to give it up as she has very brittle bones due to the steroid use as a child ,she used to spa/fight with the men even at fourteen ,she never takes a day off sick from work,she is the boss but doesn't have time for sickness, as she puts it. Her own staff daren't ring in sick! Ha ha, you have to have a good excuse to ring in sick to her.
It is really nice of you to take the time to message back thank you so much ,i feel humbled with all you have been threw bless ya.
Sandy.
Ah, Sandy. Thank you. So far I've taken it all in my stride, and I gave up the job I hated and am now doing a degree. You have to fight.
I hep that my run through of symptoms was helpful to you and your daughter.
x
hiya lupus mimics many symptoms including ms sorry to say and many others take care sandy this site is great you can always talk to someone we are all in the same boat
Thank you all. Your advice has been very helpful.
I know my dx of MS is certain, fortunately I didn't have to go through the years of "possible MS' that so many do... limbo land is the worst place to be. My diagnosis was very clear - brain and spinal cord lesions followed up with a spinal tap which tested positive for myelin breakdown products)
Having read about APS I realise that one of the blood tests I am waiting for is for exactly that. I was told anti phospholipid syndrome is what I am being tested for amongst other things. I believe they are thinking that I have a secondary auto immune disease.
Am I right in thinking that APS may or may not be associated with Lupus?
I feel a lot more positive today, thank you everybody. You are so right, the time before and after a diagnosis is awful, but particularly before I think because there is no advice, other than by finding good people such as yourselves.
Hi else5, thank you very much for your words of support, it is a great site,so much support offered.
Thank you loads, Sandy.
Sorry Annie,
I meant to say my daughter takes plaquil and methotrexate sorry not sure about the spellings,steroids and lots of other meds,but those two have helped her massively,they took a couple of months,but boy does she feel much better fatigue wise.
The ms nurse told her that the methotrexate is used in ms sometimes also and steroids.
Sandy.
They are, although steroids are , for MS in my opinion to be avoided.
For MS, steroids are used to reduce inflammation in the CNS. When there is inflammation it is disease activity. When the swelling is present it presses on other nerves and that causes those nerves to temporarily cause an acute attack, a relapse of the disease. The swelling will always go down, but leaving a scar. Steroids are used to made the swelling reduce more quickly, but the outcome will be the same. They don't stop a problem getting worse, they just hasten recovery from the symptoms associated with the acute attack - but the same about of scarring will be present no matter what you do.
For me, steroids aren't an option, by personal choice. They make me very angry!
Methtrexate is used in MS, but I have never taken it, so I can't offer any advice there.
Annie.
Plaquill I have never heard of.
Usually, for MS fatigue a drug named MODAFINIL, or PROVIL is prescribed.
Hope that helps your
x
Have I got lupus? in limbo and fed up :(
Do you need to have a positive ANA to have Lupus ? I have all the symptoms of lupus plus fibromaligia, M.E, Pernicious Anemia & Vit D Defic
Anyone have any advice? I am pregnant. (I have Hughes syndrome & Lupus).
Positive dsdna, then negative and my rheumatologist says I don't have lupus...
I've come to the conclusion I have Lupus, regardless what the NHS think
