Aa
Lupus - Do I have any takers???
OK my forum peeps, please help me out. I'm going to see a NP of a Rheumatologist next week. Has anyone been told before that they may have Lupus, as well as MS or either or? I wonder if it overlaps MS? Last time they ran labs for that type of stuff, I had a negative ANA, but I have at least 4 of the 11 criteria for Lupus. How is that???
Some of the symptoms that I have for Lupus, that I don't think are commonly seen in MS are Raynaud's, Photosensitivity, Rashes, Possible Butterfly Rash, Low Grade Fevers, Weight Loss, Heart Problems, Joint Problems, Bruising, Polychondritis, Hoarseness, etc. I've downloaded a few of my pics to my profile of what I'm experiencing.
Maybe an MS mis-diagnosis, maybe Lupus, or maybe neither, or maybe both? So many questions....
Thank you all,
Kelly
Some of the symptoms that I have for Lupus, that I don't think are commonly seen in MS are Raynaud's, Photosensitivity, Rashes, Possible Butterfly Rash, Low Grade Fevers, Weight Loss, Heart Problems, Joint Problems, Bruising, Polychondritis, Hoarseness, etc. I've downloaded a few of my pics to my profile of what I'm experiencing.
Maybe an MS mis-diagnosis, maybe Lupus, or maybe neither, or maybe both? So many questions....
Thank you all,
Kelly
I just hope the NP of the rheumie doesn't just blow me off. I hope she's one of those ones that like to think outside of the box sometimes.
Lisa, I didn't forget about you - I posted back to you on my pics.
Guitar Lisa, the Copaxone nurse that had come out to teach me the manual injections said that she sees so many people with MS that also have other autoimmune disorders. I have a lot of autoimmune disorders in my family. I guess if you're predisposed to get an autoimmune disorder, maybe it doesn't discrimminate on which one it wants you to have & wants to share equally with the ones that are out there.
Lisa, I didn't forget about you - I posted back to you on my pics.
Guitar Lisa, the Copaxone nurse that had come out to teach me the manual injections said that she sees so many people with MS that also have other autoimmune disorders. I have a lot of autoimmune disorders in my family. I guess if you're predisposed to get an autoimmune disorder, maybe it doesn't discrimminate on which one it wants you to have & wants to share equally with the ones that are out there.
It certainly isn't unheard of to have more than one autoimmune condition going on. I know a woman with MS, Sjogren's, Lupus, and Hashimoto's. She was also recently diagnosed with Type I Diabetes. What a mess! She's hanging in there, though, and still getting around well.
Make sure you are logged in each time you come to MH. The format looks a little different when you aren't logged in but it isn't always obvious to me right away if I'm not paying close attention.
Each time you use a different computer you need to log in for full access. When you do, the system automatically logs you out on the last computer you used to access MH. Of course if you weren't already logged in you would have been asked to do so before your response could post here - so maybe none of this applies.
I do think some of the things we add to our profile page and choose to have visible to the public are actually only visible to logged in MH members. I'd have to check with admin on that.
Those pictures really seem to tell a story Kelly. In fact, they scream out to be addressed.
For what it's worth, I doubt you fit well into APS. You don't have symptoms that sound like you are forming clots too easily. Easy bruising sounds more like a delay somewhere in the coagulation process or fragile vessels that leak/rupture easily. Maybe a vasculitis?
You have a lot of interest peaked gf!
Mary
Each time you use a different computer you need to log in for full access. When you do, the system automatically logs you out on the last computer you used to access MH. Of course if you weren't already logged in you would have been asked to do so before your response could post here - so maybe none of this applies.
I do think some of the things we add to our profile page and choose to have visible to the public are actually only visible to logged in MH members. I'd have to check with admin on that.
Those pictures really seem to tell a story Kelly. In fact, they scream out to be addressed.
For what it's worth, I doubt you fit well into APS. You don't have symptoms that sound like you are forming clots too easily. Easy bruising sounds more like a delay somewhere in the coagulation process or fragile vessels that leak/rupture easily. Maybe a vasculitis?
You have a lot of interest peaked gf!
Mary
Hi Sarah. I had marked my photos as public, but for some reason they are still private. I invited you to be my friend (I'm surprised that we weren't already). You should be able to view them afterwards. Thanks, Kelly
I read this post with interest as my 16 year old daughter has been referred to a rheumy in about 2 weeks time as she has had a positive ANCA test which I am very concerned about.
Anyhow I wanted to look at your photos but did not seem able to access them. It says on the top that there are 23 photos and then next line "no photos" What am I doing wrong?
Best wishes and good luck with appt.
Sarah x
Anyhow I wanted to look at your photos but did not seem able to access them. It says on the top that there are 23 photos and then next line "no photos" What am I doing wrong?
Best wishes and good luck with appt.
Sarah x
Sheesh I just saw this...(After) I wrote on all your photographs LOL.
Well Mary said it nicely and I will second that.
Hugs to you and glad you're going to a Rheum!
Lisa
Well Mary said it nicely and I will second that.
Hugs to you and glad you're going to a Rheum!
Lisa
This is all very interesting. Thank you all for the comments. Yep, I know they do mimic one another. There are so many connective tissue/autoimmune disorders out there, I'm sure we all fit into at least a portion of some of their symptoms. I just wish there was a definitive test for each one of them.
The prednisone - oh no! I want to run away - ha, just kidding. At least if it's not high doses, then I might be alright if they want to go that route - at least I'll try it.
I'm still trying to find how the spasticity and weakness fits into all of this. Especially with how much weakness I have in my hips & pelvic area. I guess maybe the lesions.
I am going to take the pics in with me, along with a list of my symptoms.
Thanks,
Kelly
The prednisone - oh no! I want to run away - ha, just kidding. At least if it's not high doses, then I might be alright if they want to go that route - at least I'll try it.
I'm still trying to find how the spasticity and weakness fits into all of this. Especially with how much weakness I have in my hips & pelvic area. I guess maybe the lesions.
I am going to take the pics in with me, along with a list of my symptoms.
Thanks,
Kelly
A comment from Karajo, Community Leader of the Medhelp Lupus Forum, who was finally diagnosed with Lupus:
"I just spent about 10-15 min in the sun prior to going inside the doc office. The lab was probably drawn about an hour later. It made my ANA go from neg to 1:2,560."
http://www.medhelp.org/posts/Lupus/Sun-flare-up/show/1263207
1:2560 is a very high positive titer! Good tip if you are ANA negative and suspect lupus/meet the lupus criteria.
Something else that comes to mind is Antiphospholipid Syndrome (APS) also called Hughes Syndrome or sticky blood syndrome. Antiphospholipid antibodies are detected in over half of the patients with systemic lupus erythematosus. Interesting to note, since you were first given this diagnosis, antiphospholipid antibodies are also associated with transverse myelitits.
Excerpts from the symptoms page on the Hughes Syndrome Foundation (each symptom goes into more detail in the article):
“It is not necessary to have ALL symptoms to be diagnosed with
Hughes Syndrome (antiphospholipid syndrome - APS)”
Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries.
The main symptoms of Hughes Syndrome can include any of the following:
Headache or migraine
Giddiness
Memory loss
Visual disturbance
Skin disorders
Thrombosis - DVTs
Heart attack
Stroke
Pulmonary embollism
Multiple Sclerosis-like features
Gastrointestinal disorders
Pregnancy problems"
"Multiple sclerosis-like features
Some people with Hughes Syndrome develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. Consequently, one of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis, and the clinical team here are continually treating patients who had been previously misdiagnosed with “multiple sclerosis”."
"I just spent about 10-15 min in the sun prior to going inside the doc office. The lab was probably drawn about an hour later. It made my ANA go from neg to 1:2,560."
http://www.medhelp.org/posts/Lupus/Sun-flare-up/show/1263207
1:2560 is a very high positive titer! Good tip if you are ANA negative and suspect lupus/meet the lupus criteria.
Something else that comes to mind is Antiphospholipid Syndrome (APS) also called Hughes Syndrome or sticky blood syndrome. Antiphospholipid antibodies are detected in over half of the patients with systemic lupus erythematosus. Interesting to note, since you were first given this diagnosis, antiphospholipid antibodies are also associated with transverse myelitits.
Excerpts from the symptoms page on the Hughes Syndrome Foundation (each symptom goes into more detail in the article):
“It is not necessary to have ALL symptoms to be diagnosed with
Hughes Syndrome (antiphospholipid syndrome - APS)”
Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries.
The main symptoms of Hughes Syndrome can include any of the following:
Headache or migraine
Giddiness
Memory loss
Visual disturbance
Skin disorders
Thrombosis - DVTs
Heart attack
Stroke
Pulmonary embollism
Multiple Sclerosis-like features
Gastrointestinal disorders
Pregnancy problems"
"Multiple sclerosis-like features
Some people with Hughes Syndrome develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. Consequently, one of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis, and the clinical team here are continually treating patients who had been previously misdiagnosed with “multiple sclerosis”."
I have been diagnosed with MS but I had a positive (or elevated - not sure what the correct term is) ANA and I have many of the symptoms including the occasional Butterfly rash. Lupus is an MS mimic from what I understand, so that is why they tested me for it. I haven't been diagnosed with it, but it hasn't been ruled out either. I guess there are others on here who have been diagnosed with both.
Funny you should mention this Kelly. Something had me looking at your pictures recently (your canine beauty drew me in originally I believe) and I noticed your butterfly like red cheeks. I've been thinking of you quite a bit lately---trying to put some parts and pieces together that might be helpful.
Now here you are saying you are scheduled to see a Rheumy NP! I think this is an excellent direction to take. Autoimmune disorders sometimes seem to beget other autoimmune disorders. Many are connected by the common thread of inflammation and it doesn't seem to me to be all that unusual for people with one AI disease to find out they have one of its sibling moving in as well.
Be forewarned! Other autoimmune conditions - especially SLE - are barely any easier to diagnose than MS :( Sadly, it can take years to come to a definitive diagnosis of lupus. ANA isn't a be-all, end-all test we are sometimes led to believe. The good news is that a rheumy who suspects an AI inflammatory condition could initiate basic treatment based on suspicions without naming a specific diagnostic code.
Do you remember I starting seeing a rheumy last year when I had a huge inflammatory flare with migratory red, swollen, painful joint spaces? He treated me with oral prednisone first and then started Plaquenil because he thinks it is more important to prevent potential permanent damage than have a specific name of a disease. He has sufficient evidence to treat under the umbrella of inflammatory arthritis and we both thought it a good idea.
Please don't get nervous with my mention of prednisone treatment! I know you haven't tolerated IVSM very well - not to mention not seeing much improvement of your symptoms. The steroid doses used for things like lupus are MUCH lower than those used for MS flares. I've taken IVSM with little immediate relief but when I was taking the low dose oral prednisone I felt more normal than I had for a very, VERY long time.
I see my rheumy tomorrow and plan to ask if recent heart problems will help him pin down another diagnosis. I hear you with the 'where does MS fit into this' question looming large. I'd love to proclaim MS isn't really my problem and play with the idea off and on. I just don't know that I can explain away all the MSish stuff - especially those pesky brain lesions.
Well, I've probably gotten way ahead of things here Kelly but it does seem that you have something going on outside a straight forward presentation of MS. I'll keep thinking about anything that might explain the heavy deficit in your pelvic girdle and lower limbs. It seems to me there should be a clue there but I'm coming up blank (or close to it).
I hope you're on the right track to finding out what's happening, the cause and (therefore) an effective treatment for improvement. BTW, some of your pictures look extremely familiar to me. Figure out a way to get them seen by this NP and her rheumy boss. Photographic 'evidence' can be very helpful if confirming blood studies are difficult to obtain in the ebb and flow of symptoms.
Please let us know how this goes. It could be important info for many here.
Mary
Now here you are saying you are scheduled to see a Rheumy NP! I think this is an excellent direction to take. Autoimmune disorders sometimes seem to beget other autoimmune disorders. Many are connected by the common thread of inflammation and it doesn't seem to me to be all that unusual for people with one AI disease to find out they have one of its sibling moving in as well.
Be forewarned! Other autoimmune conditions - especially SLE - are barely any easier to diagnose than MS :( Sadly, it can take years to come to a definitive diagnosis of lupus. ANA isn't a be-all, end-all test we are sometimes led to believe. The good news is that a rheumy who suspects an AI inflammatory condition could initiate basic treatment based on suspicions without naming a specific diagnostic code.
Do you remember I starting seeing a rheumy last year when I had a huge inflammatory flare with migratory red, swollen, painful joint spaces? He treated me with oral prednisone first and then started Plaquenil because he thinks it is more important to prevent potential permanent damage than have a specific name of a disease. He has sufficient evidence to treat under the umbrella of inflammatory arthritis and we both thought it a good idea.
Please don't get nervous with my mention of prednisone treatment! I know you haven't tolerated IVSM very well - not to mention not seeing much improvement of your symptoms. The steroid doses used for things like lupus are MUCH lower than those used for MS flares. I've taken IVSM with little immediate relief but when I was taking the low dose oral prednisone I felt more normal than I had for a very, VERY long time.
I see my rheumy tomorrow and plan to ask if recent heart problems will help him pin down another diagnosis. I hear you with the 'where does MS fit into this' question looming large. I'd love to proclaim MS isn't really my problem and play with the idea off and on. I just don't know that I can explain away all the MSish stuff - especially those pesky brain lesions.
Well, I've probably gotten way ahead of things here Kelly but it does seem that you have something going on outside a straight forward presentation of MS. I'll keep thinking about anything that might explain the heavy deficit in your pelvic girdle and lower limbs. It seems to me there should be a clue there but I'm coming up blank (or close to it).
I hope you're on the right track to finding out what's happening, the cause and (therefore) an effective treatment for improvement. BTW, some of your pictures look extremely familiar to me. Figure out a way to get them seen by this NP and her rheumy boss. Photographic 'evidence' can be very helpful if confirming blood studies are difficult to obtain in the ebb and flow of symptoms.
Please let us know how this goes. It could be important info for many here.
Mary
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