Forum

Lupus and MS

Hey, everyone. I’ve been diagnosed with lupus SLE about a year and a half ago and since then I’ve been trying to get my head around the fact that I have a chronic, unpredictable and dangerous disease. I’ve started specific treatment to try and bring it under control and by and large I have managed to do so with the help of my amazing rheumatologist. Still, few niggling symptoms remained despite the immunosuppressive treatment, symptoms that are neurological in nature. The thing is with lupus anything is possible, so numbness, pins and needles, fatigue, muscle pain, spasms, etc are all part of lupus but once that’s under control the idea is that the symptoms go away. Mine didn’t. So I asked to be referred to a specific neurologist with experience in both lupus and MS few months back. My appointment was yesterday. As with many of you, he took the history down and did a physical examination. He also did an eye exam mainly because every so often my left eye hurts slightly and seems as if it has a film over it, although the ophtalmologist says the vision is ok and the eye is also ok. The neurologist thinks that my eye reflexes are not as they should be and he said I probably have a mild optic neuritis and based on the rest of the symptoms he is sending me for the whole set of tests for MS. He will see me again in 3 months to discuss results. Now - you might think that as I’ve already got my head around the lupus, getting news that it is likely I could have MS on top of it should not be an issue. Well, I was in shock all day yesterday and I’m not that ok today either. I understand all the ‘live for today’ messages that people in their kindness give me but boy am I stunned. As if someone slapped me really hard and I can’t stop my mind from spinning. I’m now trying to separate the symptoms that could be lupus from those that could be MS because as I understand it, to diagnose a specific type of MS there have to be a set of relapses and remissions, or continuous symptoms. I’m worried that if I don’t get that separation done properly, I won’t get diagnosed. No diagnose, no treatment. I don’t find it difficult to identify the neuro symptoms because with lupus I keep a diary of symptoms anyway. But now I have to go back and think ‘was that in a lupus flare, has it reacted to steroids, has it reacted to immunosuppressants’ and I’m not sure how good my recollection will be. Anyway, long post, I just wanted to say hello and that although I’m hoping I don’t have MS, I have a strong feeling that it might be. I feel so guilty for my husband - not only he has to take care of me as a lupus sufferer, ms too now. One last thing - I’m so scared I’m going to lose my eye sight in the affected eye. And I’m just scared period. Thank you for reading!

Aw, I want to reassure you as you sound so stressed, seriously tho, let the medical profession do their bit, it’s their job!

Explain you have Lupus and you’re worried about confusing symptoms, they will be able to work it out.

I was so concerned about another issues that my neuro had to be really patient and understanding with me, to be honest I was very confused and upset when I saw him first and MS is not even his specialist field but he picked his way through it :slight_smile:

I was referred on the basis of a spinal MRI that showed lesions so he already had a good idea but I didn’t at all, I thought I had a trapped nerve and was really angry at my gastroenterologist at that particular time :wink:

Be straight and let them do the figuring out, just make it clear what your worst worries are (about your eye) - and make it clear you are struggling as you are now unclear what is what, even ask the questions if the 2 can occur together?

hugs

Sonia x

[quote=“nindancer”]

Aw, I want to reassure you as you sound so stressed, seriously tho, let the medical profession do their bit, it’s their job!

Explain you have Lupus and you’re worried about confusing symptoms, they will be able to work it out.

I was so concerned about another issues that my neuro had to be really patient and understanding with me, to be honest I was very confused and upset when I saw him first and MS is not even his specialist field but he picked his way through it :slight_smile:

I was referred on the basis of a spinal MRI that showed lesions so he already had a good idea but I didn’t at all, I thought I had a trapped nerve and was really angry at my gastroenterologist at that particular time :wink:

Be straight and let them do the figuring out, just make it clear what your worst worries are (about your eye) - and make it clear you are struggling as you are now unclear what is what, even ask the questions if the 2 can occur together?

hugs

Sonia x

[/quote] Thank you for your kind words, Sonia. I wish I could let them sort it out, only from my experience with being diagnosed with lupus (that took 2.5 years) I know the value of pushing specialists to consider things that they might not. However, as there is a lot more understanding and help for MS sufferers than lupus, I suspect you are right and I should just let them do their job!

Sonia, I did respond but my message doesn’t appear for some reason. I wanted to thank you for your kind words and to say that yes, I agree, I should just let them do their job. MS seems to be better understood than lupus and there is much more awareness of the questions a patient might have, not so with lupus. Thank you again.

Got it, I bet it went for approval!

Good luck tho :slight_smile:

Sonia x

Just to say hello. I agree that the neuro should be able to sort out lupus from ms plus I assume that some of the tests for ms would only be positive for ms (ie lesions) not lupus and vice versa Axx

Arwen, hello - I see what you mean, probably yes, the lesions would be indicative of MS. In any event, I’m devastated, I’ve been crying on and off today, I’m so shocked I’ve been physically sick. I know there are a lot of positives but at the moment my brain is not accepting those for some reason. I’m sure I’m not the first one to have such a reaction at this point, though. Thank you for responding.

I can empathise when the neuro told me possible ms I spent the next 24hrs crying even though I’d gone suspecting it Axx

Hello Purpletop.

I know how your feeling. I was diagnosed with Psoriatic arthritis in 2007 and now I’ve just recently been diagnosed with MS.

I’m starting to wonder which of my symptoms relate to which condition. Regards to my Neurologist though!! he clearly knows the difference between my two conditions.

Its a scary time for you at the moment…lots for you to think about and cope with. Take it slowly and be kind to yourself…you’ll cope with this I’m sure.

Take care, Noreen

Hi Purpletop I’ve just been diagnosed with MS, hence the reason I’m here and I noticed your post and how upset you are - just to say my younger brother (13 yrs between us) was diagnosed with Lupus at age of ap16 and he is still doing ok now at age of 33. I wouldn’t call Lupus a “chronic, unpredictable and dangerous disease” - it is what you want it to be. I’ve always told my brother to ‘live with’ the disease and not ‘against’ it. Anyway, now, bam! I’ve just been diagnosed with MS. Scan showed 10-15 liesions - brain & spine and I don’t know how or when I was relapsing - it was only after a fall and my leg dragged that I found out. I’m still surprised the news hasn’t phased me - family and friends are more concerned at the condition than I am. Maybe because my brother has lupus and I’m now taking on my own advice that I’d given him for years. Purpletop, you will be fine, now you have got the medication that works for you, you will be fine. Stress is something Lupus and MS sufferers must avoid - yoga, tai chi, qigong also helps the condition greatly.