MS & Lupus & Autoimmune Clusters

Hello, thank you in advance if anyone reads this and responds.  I'm posting this in the Lupus and MS sections and may post it in others if they fit.

I have read many times that it is rare or even unlikely to have MS and lupus together but I have also heard of people having both diagnoses.  As a nurse and as a patient I'm well aware of the differences between the two diseases but I am also quite aware of how autoimmune diseases overlap and happen in clusters at times, they give the specialists a run for their money and are difficult to diagnose, even for the best of them.  I have been to Stanford and to many great specialists but I have new symptoms, too,and it's hard to keep up on them all and keeping up with medical appointments and striving for answers can be exhausting.  

I was officially diagnosed with MS in 1997. I'm now 46 years old. I have been treated for Hashimoto's Thyroiditis since I was 21 and have a strong family history of autoimmune disorders.  The MS was diagnosed due to positive lesions in the brain, cervical, and thoracic spinal cords, as well as positive Oligoclonal bands in the CSF (spinal fluid) and also very elevated Myelin Basic Protein (MBP) on the most recent spinal tap.  

I have numerous symptoms that cannot be blamed on the MS and have been told I most likely have a cluster of other autoimmune processes going on but the only one officially diagnosed is the MS.  I have had joint problems all my life, early onset degenerative joint disease with my first knee surgery at age 12. I have arthritis in my hips, spine, facet degeneration, numerous bone spurs in various joints.  In the past 3 years I began experiencing spontaneous ruptures in tendons and ligaments. I had surgery 2 years ago on my peroneus brevis tendon of my ankle and the surgeon said it was split into 4 strands like a mop and he had never seen that in all his years of sports medicine. I also had tears in both shoulders at the same time that did not result in surgery, they cause me problems chronically. I also have small "tears" in the plantar fascia ligaments of the soles of both feet that resulted in large bulbous nodules of scarring which are very tender, they swell and reduce off and on.  I've had a history of numerous abdominal surgeries for adhesions and was told that my internal tissues were "friable" (fragile) and difficult to suture so the surgeries took a lot longer than they normally would.  Because of all these things I was told last year that I perhaps had  an autoimmune condition affecting the collagen/connective tissue.  

I have had many doctors throughout my life think I presented as a lupus patient but I have never had an elevated sed rate even with all the proven inflammation in my nervous system and joints.  I have had a positive ANA at different times that is negative other times and I have had an elevated CRP before.  I'm not sure if it matters but my family tends to have odd reactions to lab work and immune responses.  My mother had a ruptured bowel yet her white count did not go up and neither did my daughter's at 14 years old when her appendix ruptured and had been leaking for approximately "10-12 hours" according to the docs at the time. None of us tend to run fevers even with known infections or run very low grade temps that wouldn't be considered fevers in "normal" people even when pneumonia has been diagnosed.  

In the past 2 years I have developed chronic redness of small joints, they get a reddened area on top and tend to itch when the inflammation is present. The newest symptom is the face rash. I have had flushing of the face before, over and over, that has appeared in a butterfly pattern and flushing of the arms and have had many doctors question a lupus diagnosis. But currently it is a full blown rash and has been happening off and on for about 6 months but has been daily for about the last 2 months. It is red, slightly raised, scaly/rough at touch, scaly sloughing off of layers, a mild occasional itch with a burning or sharp stinging sensation and it is on both cheeks, the bridge of my nose between my eyebrows, the chin, and a few patches on my scalp. I have experienced hair loss around the face resulting in tiny baby hairs at the scalp line and I have a constant burning patch on the top of my head and on my chest.

While currently the MS diagnosis is still considered to be definite based on previous tests, a few doctors are once again considering lupus. The problem? Well, the most recent lab work was all negative yet it's possible I had it done too close to having been on steroids. I periodically get steroid injections in my spine or joints also and I don't know how close it was to those, but I was put on low dose oral steroids for about 6 months to try to combat the severe fatigue I've been experiencing which they thought was possibly from adrenal fatigue--not that I don't have enough autoimmune things going on to cause the fatigue itself!



I have a lot of peripheral nervous system symptoms that also cannot be attributed to the MS but I do have clear cut CNS symptoms, too. As mentioned I have abnormalities in the spinal fluid but one I didn't mention was that I had a high titer for Varicella Zoster in the spinal fluid and I have yet to meet a neurologist who can answer that one.

I have read so many times, even at lupus.org, that no test or negative test can rule out lupus, that there is still not a definitive blood test for it yet I see people all the time say they "tested positive" or "tested negative' for lupus.  I was told by the Stanford Rheumatologists that since my blood work was all negative at that time that they could rule out lupus but that I probably have an unknown autoimmune condition yet to be named or perhaps have a variation of Ehler's Danlos Syndrome. At the time I did not have the solid face rash but did have the reddened joints. They flat out told me that MS & Lupus do NOT happen together, that if there are two together it is usually Lupus & RA and my RA panels have always been negative except for the occasional positive ANA.  

So...I know this is long, forgive me, but I'm so confused.  I know they don't know as much about autoimmune conditions as they would like to admit ("they" being the medical field in general) but it leaves us patients in such a state of frustration. The pain and fatigue right now are debilitating. I have gone from being an active Registered Nurse who loved taking care of patients to being an inactive disabled person who has to be taken care of in a lot of ways and it's very disheartening and scary.  I don't know what to do next. I'm considering going to a dermatologist to see about having the skin rash biopsied but I"m not sure if that's something that would make a difference or not since even if they said it was a lupus rash it seems the other specialists wouldn't believe it if my labs were still negative.

The lupus.org site says that no doctor should tell a patient they can't have lupus based on negative labs.  I have many things on the list of ACR lupus criteria definitions but I also know that MS and lupus can mimic each other. I know that Lupus can cause lesions in the spinal cord but can it cause the positive oligoclonal bands and elevated basic protein? I've never heard of people getting rashes or joint problems from MS so it certainly feels that I may have both conditions based on clinical symptoms. It's imperitive to get the right diagnoses in order to be placed on the right treatments. I am not on any of the popular MS meds because my body couldn't tolerate them.

(continued below because I typed too much! ;)


This discussion is related to Is it possible to have MS and Lupus?.

[SaraRN]

Continued by SaraRN from above LONG letter ;) this is the rest of the recent story and the conclusion and summary of questions:

I get very weak, light headed, and just feel like I have to lay down or put my head down. At a recent neuro appt I was having trouble standing (even with my cane) at the lobby desk to check in. Once in the exam room I was doing okay, sitting in a chair talking to the doctor. Suddenly I began feeling clammy and my heart rate increased and I just let out, "I don't feel well" and felt like I was going to fall out of the chair. The doctor helped me to the bed in the room and he said my heart rate was in the 150's and it felt like a fish was flopping out of water on top of my chest. I was having intermittent sharp ice pick type pain from inside like someone was poking my chest wall but no generalized chest pain. The doctor called 911 and insisted I go to the hospital for evaluation because of the long drive I had ahead of me (my husband was driving but it was 2.5 hrs and no medical facilities in that distance between there and home).  My blood pressure, which is normally low had soared to 175/151 when the paramedics were there.  My resting heart rate eventually came down and so did my bp, but it took several hours before they were considered normal and the ER doctor ruled out all the life threatening things like clots and heart attacks so they let me go. I told him that some of my doctors were considering lupus as a possibility and he said that if it turned out to be Lupus that it could definitely cause the symptoms I experienced that day.  

So there you go, a hodge podge mish mash of various things all wreaking havoc with my body. I've been going through a depression of sorts but it's hard to know whether it is in response to  circumstances or not and when you look up MS or Lupus they both list depression as a symptom so I'm not sure what to think, I just know it's worse than I have experienced before. It's been a long wild road and I'm just so tired of it all. I now have a horrible reputation with my family because I cannot commit to any scheduled social events because I never know what shape I'll be in on that particular day and when I do try to commit I end up letting everyone down if I feel like crap that day. My own daughter doesn't seem to have the compassion to try to understand what I"m going through and it's breaking my heart to constantly have to apologize for letting everyone down. I wish they could understand that I certainly don't want to be like this, I'd rather be the old active self who did everything and took care of everyone else. I'd rather be a nurse than the patient any day of the week!

Thanks for reading if you made it this far, if not, well, it was at least good to get it all down in writing! If anyone out there knows information or of cases of people having both MS and Lupus I'd be greatly interested, or if the cases of Lupus that mimic MS closely have been known to cause the positive results in the spinal fluid (like elevated MBP, WBC, Oligoclonal Bands, Varicella Zoster). Also, if anyone has any information about the skin biopsies of face rashes that resulted in a Lupus diagnosis I'd be interested in that, too. I think I may make a dermatology appointment since the internist and neurologist don't know what to make of the new face rash. Thanks!

[opinmin]

I have read Lupus has been diagnosed as MS and one can have MS and Lupus at the same time, www.uklupus.co.uk.

[AAA7353]

Dear Sara,
So sorry for your illness(es).   I am going through something VERY similar.  I was diagnosed with MS in 1992.  I had Optic Neuritis with complete loss of vision in the left eye.  I did have more Lupus symptoms,(Raynaud's, alopecia) like you, previously.  My family doctor thought the ON was from Lupus.  I did test positive for MS due to plaque load in 3 sections of my brain on the MRI taken 6 months after the MS attack. (I did get my vision back, heavy steroid drip for 4  days and then a wean off at home.) I also have hypothyroid, I take synthroid.  I'm 56 yrs old but feel like 96.
After almost 18 years now I still have MS symptoms and Lupus symptoms.  I have been "questionably" diagnosed now with Relapsing Polychondritis which is a rheumatic autoimmune disease.(My aunt had Still's disease which is junvenile rheumatoid arthritis.)  I have ear cartilage that is so raw I cannot sleep on my side without cupping my hand over my ear.  I have torso pain that is consistant with either the Polychondritis or the MS.I'm always stiff and can't stay still for long periods of time as it hurts too badly.   My mom died in November and I seemed to have an "attack" of the Polychondritis in the torso, which by the way, always hurts on the right.  It was so bad that I was nauseous. It lasted for 7 weeks!  I always had pain in the back next to the spinal cord on either side where I asked my loved ones to press their thumbs in to open the muscles.  I should mention that 7 years before my MS diagnosis I was diagnosed with Degenerative Disc disease.
So as you can see I have that mix of illnesses too.  
I do think you should try one of the disease modifying meds again.  I take Copaxone.  One injection a day for the last 8 years.  It cuts attacks by a  third.  I'll never really know if the shots help but at this point I'm not willing to stop them to find out how I'd be without them.  My doc started me on them well into my illness not at the beginning as they were not available at that point and then after they were, he said he didn't "want to make me a guinea pig."  I believe that was a mistake.  I hurt all over due to damage from the MS.   I have the MS hug and torso pain as well as some of the other typical problems like double vision and balance on occasion.  I also have foot drop which I try to keep under control with exercise or physical therapy.
Before you get skin biopsies make sure that they will be definitive for Lupus. You may have both diseases.  My doctors told me it's not unusual to have more than one or even two autoimmune illness.  Good luck.

[DDTX]

Dear Sara,
I read your entire post. I'm sorry you're sick. There are conflicting views concerning wheather it is possible to have both MS and Lupus. Personally, I agree with you and AAA7353. I suffered for 26 years with some kind of autoimmune disease. In May 2010, I was formally diagnosed with MS. My neurologist has been very, very thorough. I've been his patient for five years. He needed to observe a clinical episode of MS relapse. He had four adnormal MRI's of my brain, optic neuritis, tremors, and numbness in hands and feet. I am glad I got sick in his office. I went from being semi-o.k. to having a full-blown tremor. I was unable to walk, couldn't write, couldn't focus my eyes, couldn't pass a simple neurology test. I struggled to talk. It sounded like words from a stroke victim. He and his team of doctors watched and observed as this "episode" ran its course. Afterwards I really had to use the bathroom. Thankfully, I didn't wet myself, because I was wearing a bladder protection pad. I was started on daily Copaxone injections. I'm not doing well with the shots. They cause lumps, soreness, ugly blue bruises, and I've ran a fever the whole time I was giving myself the shots, so I just stopped. My rheumatologist told me  the RA panel came back negative. He gave me more medicine to treat fibromyalgia. As for climate, I prefer cool. Warm is miserable, and so is cold. I live in TX. I am 49. Sometimes I get flashes. I'm going through the change. So I want to say thanks for sharing your experience. You're ight, it does help to write it all down.  Sara, please keep seeking answers. Only you know your body. You are not alone. And you never need to apologize for being sick. You sound like a sweet, caring person. It takes a very special personality to care enough about life to become a RN. It's bad when our families simply can't relate to our illness. Maybe it is because MS and Lupus are internal illnesses. Most of us girls just look too good to be "sick."................All the best, Dea

[stacystevenson]

Wondering if you have received any answers. I am experiencing something similar but am in a bad doctor situation and feel like I am not allowed to ask anymore questions and am just told to go to the ER if I call. I was diagnosed with Lupus recently and had steroids and Plaquenil. It's been more than a month with the Plaquenil ( I know it can take awhile to kick in) but I am still very tired, my personality has changed (I feel so mean most of the time) and I am having muscle spasms in my legs, rippling or ticking muscles, a tourniquet feeling around my upper right arm and it just becomes weak and useless, lots of pain in the legs and weakness, lighting bolt of intense pain across right side of face, my lips get pins and needles off and on and my vision just doesn't seem right. I get so frustrated because I know when I go to the doc I will feel fine...though I did have an "episode" last time I was at the gynecologist just for a change in pills...I got all clammy and hot and woozie...I attribute it to the flourescent lighting (so harsh!) I get really out of sorts in stores with lights like that too. I get confused and so tired that I feel like I need to call someone to come get me. If it weren't for the cart I would fall down!

SO, with that said...I guess maybe I am looking for reassurance that it's OK to ask my doc about these things, or tell the rheumatologist that these symptoms persist and things have not improved. I am not yet 30 (in October this year) and have had one child. My health went totally downhill the minute I stopped nursing...it was getting iffy after I had her, but then went real bad once I stopped nursing.

Thanks for any advice.

Stacy

[katybgood]

I have been told by my MS neuro that MS & Lupus can and do co-exist. It is different from mixed connective tissue disease. They "loosely" call it Lupoid Sclerosis.
- Kathy

[ccurci]

Sara,
reading your story sounds like mine although no answers was dx,d with ms in 2004 all tests were normal including LMP my mri's shown various lesions yearly except last sept when it was medically stable. last month admitted to hospital for extreme abd pain the rectal bleeding dx ischemic colitis (no fam hx of any gi problems. friends whom have lupus swear i have lupus, i have + anti phos syndrome protein s deficiency in the labs then high crp extreme anemia and high ANA i cant win and also family issues on the bad list because i cant do things for family because i am too beat! let us know how you are doing. my hematologist wants me to see a reumatologist now
camille

[AAA7353]

Hi,
How are all of you doing?  I'm glad I got an email from Medhelp because I have such a poor memory.  It's embarrassing.  I am going for PT at this point. I have become weak in my legs and the fatigue gets overwhelming.  I am 57 and will turn 58 in July.  Deceivingly, my hair has not grayed yet!  People say you look good!  I feel like a very old lady.  My right leg is weak and I am seeing a foot doc tomorrow.  I have what feels like pain in the instep and on the pad below the toes underneath there's a kind of numb feeling. I cannot wear shoes, only walking sneakers.  Now that's not even helping. I am going to get an xray to make sure there's nothing in the foot like a neuroma.  I have MS, possible Lupus and now Relapsing Polychondritis,(see my above post) I also have hypothyroid.  I am very thin on the top portion of my body and heavy on bottom.  My legs are full of veins, mostly spider veins since I am 12 yrs old.
I have arthritis in my spine, a ruptured disk and muscle spasm.I also have diverticulosis and have been hospitalized for abcesses. Antibiotics, IV fluids no food for a week. Thank God I recovered with no surgery.

I have a new grandbaby girl who's very heavy.   She is 25 lbs at 9 months old, I can't hold her for more that 2 minutes, even sitting.  I will not babysit for her unless my husband is with me.  
My 24 yr old daughter shows some signs of tendonitis frequently and she goes to the doctor and gets meds for this periodically.  She has "irritable bowel" and we've been having her tested for Crohn's, (my husband has it.)  Her symptoms are more compatible with my diverticulosis symptoms.  She doesn't have that though. My son has Barret's esophogus and is being treated for that.  My daughter now has symptoms of that too.  She is being treated.  She doesn't show Barret's on her biopsies.  Both of them have had endoscopes and my daughter had a colonoscopy as well.  I have a lot on my plate.  My extended family seems to think we are all so lucky, my husband does well, ( thank God) financially.  We are lucky but I'd trade the $$ to have good health for me and my family.
We are the ones who do all the holidays and entertaining at Christmas and Easter summer bbq's, etc.  I am exhausted.  My husband loves it all.  He helps a lot as I can't do any heavy work.  I cook every day as my husband has Crohn's . I also like to cook. Food shopping is difficult so I go 3 times a week for groceries and keep it light.
I am grateful for the mobility I have as my good friend is wheelchair bound and her husband left her many yrs ago.  I get the guilts for being mobile and I get the guilts for feeling lousy too.  
My own mother, didn't sympathize at all and caused me so much grief at the end of her life.  I did take care of her needs always. That took a lot out of me.  I should have been "taken care of " myself and my doctor told me to stop the daily work I did for her. I couldn't. She did a horrible thing to me during a grieving period (loss of my grandson) she hurt me and my son and daughter-in-law terribly.  She apologized to me on her death bed.  It did give me some comfort.  I am dealing with all this right now.  She died last year. She wasn't well mentally and had a difficult life as a child and my father was a ******* to her.  I always felt so sorry for her.  All this added to my disease process, I am convinced.
I hope all of you are not dealing too badly with family matters.  I do know how everyone "expects" from us as women.  We don't look unwell unless there's a cane in hand or we are wheelchair bound.  Heck, even with the cane and extreme pain I was expected to bath, change sheets, cook shop and pay the bills and do household repairs for my mom.  My brother and sis too.  They were always "expecting" me to do all this. I was pushing my mom in the wheelchair at my son's wedding!  My brother and sis were totally uncooperative. I am trying to get over all of this. I am a non-confrontational person and lately I am sorry that I didn't speak up sooner. I am starting to change on that front. (Too little, too late).
Sorry for the rant but illness brings about a lot of issues and you find out who really loves you when you can't do as much for people.  
Take care of yourselves, if you don't do it, no one else will.  I wish you all answers and relief from your pain.  God bless us all.  

[ashley899]

I am 26 years old and i was diagnosed with MS at age 24........my mother also has MS and she has Lupus too....my grandmother died with lupus and Alzheimer's disease.....one of my uncles has MS as well.....my mother had Graves disease when i was 8 and almost died from it.....needless to say we seem to have a lot going on in our family as far as autoimmune stuff goes......i have had concerns about developing lupus as well because i do have some very striking symptoms of it...the only one i dont have is low grade fevers.......its hard to tell everything apart because so many things mimic MS and vice versa.......they already think i might be moving into secondary progressive because i no longer have attacks but i am significantly worse every 6 months....I also have gastroparesis which is typically only found in diabetics......and ive been looked at for cushings disease as well.......all in all it doesnt provide much opportunity for optimism.....but without a doubt MS and Lupus do occur together.

[jouj221]

I am 27 and was diagnosed with Lupus first at age 24, and MS at age 27. It wasn't until my lupus-symptons were worsening and I started complaining about sever memory loss and cognitive dysfunction that I had an MRI performed, followed by other tests, that indicated MS. I refused to take the steroid injections for most of my treatment of lupus, but also suffer from hypothyroidism. I am not sure what I will do next to deal with all of this, and I am not sure what to expect. I am the only one in my family who has either of these ailments, although thyroid disorders are prevalent.

[StacVN]

Oh my goodness. SaraRN I pray for you and your family. May you're paths even out. Hard to cope if you do not have the added family support. I was dx Lupus 1996 (in SA), diagnosed with MS in 2012 (USA). Unconvinced response from Neurologist in UK. There is no conclusive diagnosis for either and like with many things in life it is how many boxes it ticks. This varying diagnosis makes me nervous because I have taken different meds over the years. Surely not good for my  system. But hey, hey, one day. Also hard for us as our loved ones cannot see a broken leg, arm in a cast, the poor people are clueless. I wish the best for all who are in this boat. I hope the sea's calm down.

[SaraRN]

Hi Everyone, this is Sara from original post.  Thank you so much for reading, for responding, for thoughts/prayers!  I'm so sorry to see others going through this.  

Not much has changed since then. I've had more surgery & more in my future.  I had gotten better and went back to school but had to quit when I got worse.  I was diagnosed with Lipedema and secondary lymphedema and told by the Lymphologist that it was most likely related to the generalized connective tissue weakness. The newest rheumatologist says it's not Lupus even though I do get a malar rash.  I currently have a positive ANA (speckled pattern), mildly elevated C4 Complement, and mildly elevated ESR  but all those things can be elevated from my other known autoimmune issues so it's not conclusive of anything. I now have Autonomic Dysfunction that affects the heart and other things.

I still don't have any answers for the connective tissue mysteries, but more symptoms have developed recently and maybe there will be helpful clues.  I'm awaiting a neurosurgeon consult for numerous spinal cord compressions now (weak CT again causing it? no answers).  Something is progressing since I had films last May 2012 and these are new/worsened findings since then.  

Sometimes I regret putting this all out there on the internet but if it helps someone feel like they aren't alone it's worth it.  Thank you for those who wrote & made me feel like I'm not alone, too!

[SaraRN]

All of these comments and others like them around the web are reasons why we need better TEAM medicine and team approaches to patients with complicated health histories!  

Sometimes I feel like if my doctors would get in a room and talk to each other and put some thought into solving this stuff I'd have had answers by now.  They all focus on their own specialties and the test results that only pertain to them without seeing the bigger picture.  So frustrating!