[Stella28]

Hi all
My major health problems started 4 years ago when I had a major attack of inflammation on my spinal cord, which left me in hospital and rehab centre for 3 months. Since that time I've been dxd with MS, whilst having loads of test it was discovered I had a positive Ana & RNP and was dxd with sjogren's. I have seen many doctors who all thought the sjogren's has not caused the inflammation, so I've been dxd with both.
I have had problems with fatigue for a long time but never really put it down to any illness just a busy mother. I've now developed further symptoms, hairloss, rashes on face and feet, constant UTI's and many other problems, my rheumalogist says it may be MCTD as well. I was wondering if I could have lupus as well, I have the facial rash on cheeks and nose which is pale when I get up and flares up in the day. Is a lupus rash always visable? and how can you tell if you are having a flare? I also have time when my skin goes very pale and feel unwell especially when I do too much, does anyone else suffer this?
Sorry I just trying to find some answers as the doctors dont want to commit themselves to an answer, and never give my a straight answer.
Many thanks
Stella

 

[Lily]

Hi Stella and welcome

The Lupus rash can come and go and range from mild to really really obvious.

It's entirely possible you could have Lupus. Are you saying they have diagnosed you with both MS and Sjogren's? What meds are you taking?

Have you seen a Rheumatologist who specialises in Lupus and other connective tissue diseases? That is best as not all are that well versed in Lupus. If you like you could ask in Find a Doctor Forum for recommendations from people in your area.

The presence of RNP in low range occurs in Lupus, if it's in the high range then it's more likely to be Mixed Connective Tissue Disease.

Do you know if any of them have tested you for APS- Antiphospholipid syndrome? The tests for that are anti-cardiolipin and the confusingly named lupus anticoagulant. It can exist alongside any of the connective tissue diseases or some people just have that condition alone. I ask because APS mimics MS in many respects and lots of docs don't think to test for it. Have you had any history of miscarriage or thrombosis?

I would start by trying to find a physician who you know is really involved with treating Lupus and is up on all the ways it might present. I would also strongly encourage you to get copies of all your actual test results to see just what has been investigated and what the results were.

Sjogren's can in some cases involve the central nervous system, I am guessing you have had an extensive neuro work-up and wonder how they came up with the MS diagnosis?

love
Lily

 

[LolaLola]

Hello, Welcome to you. Definitely do follow up on the question of APS. Many people are wrongly diagnosed with MS. If you do have APS treatment can be really simple. Lupus rashes are not necessarily there all the time. In fact some people don't have them, others just look nicely pink and well.
x Lola

 

[onetay]

Stella,
Welcome and I am sorry that you are having these problems, it is hard enough being a mom. I encourage you to keep talking with your doctors and pushing to rule out things or commit to something. Lupus dx take a long time as in all most all cases it mimices other diseases that must be ruled out first. You should be seeing a rhuemy that specializes in lupus it that is what you think might be wrong. Though being a mom does make you very tired most of the time, fatigue all the time is not normal I would say. It is important that the doctors you see speak to each other so tests are not repeated.

I am so sorry you are having these problems and wish you the best in luck and hope you start feeling better soon.
Tammy

 

[Lily]

Hi again Stella,

Disregard my previous reply.

I have just been back and read your past posts and discovered that you had a Lupus/Sjogrens diagnosis from St. Thoms. I would trust that diagnosis, they are the experts after all.

As mentioned you can have central nervous system problems from either, and it sounds like it's very possible your initial presentation which led to the other doc diagnosing MS could very well have been the onset of Lupus. It's not uncommon for Lupus to present like that attacking the nervous system as it's first target and confusing all and sundry. That's what happened to me except after extensive testing MS was ruled out and eventually Lupus, Sjogren's and Central Nervous System Vasculitis confirmed. It was quite a journey (for want of an acceptable phrase that won't get me censored :lol: ) which is why I posted some information for those people with similar symptoms/scenarios. Many of us were considered to possibly have MS early on in our investigations.

Here is one of several posts in the Symptoms forum I did about CNS presentations of Lupus:

http://www.thelupussite.com/forum/showthread.php?t=48000

I assume when St. Thoms did your APS bloods that they came back negative? That makes the prospect that the initial presentation was more likely Lupus related than APS, but APS bloods can jump around too. So they just may not have caught it at the time as they weren't looking for that. What tests and abnormalities were carried out to confirm your MS diagnosis?

More importantly who is looking after your needs now and which meds are you on? Do you have any remaining problems that could be pointing to involvement of your CNS? If you haven't already I would go back and see the St. Thoms team, especially given the addition of your latest symptoms.

love
Lily

 

[lazylegs]

Hi Stella,

Lupus can present in many ways. My initial symptoms had doctors thinking MS. All testing eventually turned out negative. How was your MS diagnosed? Was it by MRI and/or lumbar puncture or by the spinal cord inflammation and further exasperations?

When you had your spinal cord inflammation did the doctor diagnose you with Transverse Myelitis or Myelopathy? Transverse Myelitis does occur in both Lupus and Sjogren's. The following site has some limited information:

http://www.mayoclinic.com/health/transverse-myelitis/DS00854/DSECTION=causes

I hope you get some definitive answers soon.

Take care,
Lazylegs

 

[Stella28]

Hi
Thanks for your posts and support. My health problems are quite complex and I've been through so much that I gave up looking for any reason that caused my problems. I was refered to St Tommy's last year, first told Lupus/Sjogrens, but blood test failed to confirm it. Negative APS, and low positive ANA & RNP.
Going to St tommys this week and dont know wether I will be wasting mine and there time. Feeling very down as I'm pretty much housebound as I'm not able to walk far and really on others to take me out.
My MS dxd came about after my MRI results, first brain clear, spinal one showed inflammation and lesions from c1-c7, 6 month later scan showed 2 brain lesions. My blood results werent positive enough to put in down to sjogrens. My Neuro dismissed me 2 years ago as my problems were stable and remained so as I have not got any worse or better.
I taking various meds including plaquenil, baclofen, amtripyline, and for high blood pressure and acid reflux.
My MS nurse is not sure if I have MS as I dont fit any pattern of MS, MS specialist didnt couldnt give me a type either so couldnt have DMDS.
So I'm stuck in the middle not sure which route I will end up at.
Thanks
Stella