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Old 03-21-2011, 07:35 PM   #1
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Can you have MS and an autoimmune disease both?

Can you have MS and MCTD or is it either one or the other? I feel like I am eat up with a nerve disease but I thought it was due to multiple degenerative areas in my back, maybe irritating my nerves. Neuro says no way my back is doing all this. He wants to do a spinal tap but he said he'd wait until I see my rhematologist about the MCTD. My back pain has been so extreme, I'm having a hard time believing I could have MS.

 
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Old 03-21-2011, 10:22 PM   #2
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Re: Can you have MS and an autoimmune disease both?


There are over eighty autoimmune diseases in the US. The top 3 are Grave's disease, followed by Rheumatoid arthritis, and Hashimoto's thyroiditis. Of the top 10, MS is #7. I know people with Rheumatoid arthritis and MS both. Thus, I would say that yes, you can have both. The neurologist may not be referring to MS, but instead one of many diseases which might present with MS like symptoms. I would defer to your doctors- neuro and Rheumy- to consult with one another and find the solution you need. The only way to get the MS diagnosis is to partake in the testing. If you look at the revised McDonald Criteria, you will see the tests used by the neuro to determine what your ailment is. I wish you a speedy resolution. If it is MS, please visit and ask all the questions you need asked- and hopefully answered.
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Old 03-22-2011, 04:24 AM   #3
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Re: Can you have MS and an autoimmune disease both?

I just wanted to add, the title of the post is slightly skewed. MS is an autoimmune disease.....therefore asking if you can have MS and an autoimmune disease, makes little sense.

I know people with connective tissue disorders and MS right here in my area- so yes, its very possible to have both of these illnesses at the same time.

You really do need to talk to a Rheumy. However, I would also question why the Neuro wants to do a Spinal Tap....spinal taps are hardly accurate for MS. Have you gone thru the standard MS testing such as EMGs and MRIs in the area, looking for lesions which would indicate MS? Connective tissue disorders arent going to show up on a MRI, the way MS lesions will.

Id be curious to know how they dx you with MCTD; as it is very distant cousin of Lupus, another disease which presents similarily to MS, but isnt the same at all.

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Old 03-22-2011, 07:07 AM   #4
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Re: Can you have MS and an autoimmune disease both?

I have a high positive ANA 1:640, have had positive for 11 years of checking it. I also was diagnosed with lupus in 2000, but my PCP said it was fibromyalgia. I had a dx of CFS. I now have high RNP levels, which lower when I take antimalarials, but I do not have inflammatory markers (ESR, RF factor). I am deficiant with Vit D & B12, I have muscle weakness, muscle pain, prolonged severe fatigue since 1997, lip ulcerations, mouth sores, exercise intolerance (I get chest tightness, forceful rapid pulse, and shortness of breath). I only get joint pain through walking/exercising. I have no rash, no joint swelling, no edema, do not have symptoms of scleroderma. I have bladder/esophageal/stomach inflammation. No kidney disease, but I have bladder disease. I also get muscle spasms, twitching. Nerve related I guess burning, cooling sensations, pins and needles shooting pains, headaches. The pain variates in my back from sharp on my lower thoracic to feeling like someone kicked me in my lumbar area, to dull throbbing pain in my upper thoracic, to whiplash feelings in my neck. The severity of my pain is all in my back & neck and my legs ache alot.

I honestly have no idea what I am overlapping with MCTD but I have the serological markers for it and I respond to medication for it for so long. I know I have it. I have been nonfunctional with my life since 1997. That to me is the tell all. I'm not getting better, this is not going away. I've always known it was more serious than just fibromyalgia. But a doctor that doesn't believe me I guess, my own family doesn't believe it, they think because I have had the FMS diagnosis, it's all been in my head. I'm starting to believe my PCP feels the same way and he just keeps calling it FMS as his way of being nice about it. I haven't worked, my biggest accomplishment in life was working in a grocery store. My son was telling me yesterday how stupid I was because of that. I guess I didn't get a full understanding until yesterday at what a failure he really thinks I am. And my daughter, she says I am a lazy peice of crap, all I want to do is lay around in bed, that my life is worthless. Does that sound like an autoimmune disease to you? It does to me.. I've seen what these people go through, and I saw myself.

I didn't know that multiple sclerosis was an AI disease too. Back in 2005, I went to this neurologist over tingling & myofacial pain. He put me on neurontin, it eventually subsided. I have since been sent to another neurologist over migraine headaches. He thinks because of that, and my symptoms I have now, that I have MS, yes he clearly told me he thought that. I did have a brain MRI back when I used to go to him, and it was fine. That is why he wanted to do a spinal tap. I guess unless my rhematologist thinks I need it, he will not do a spinal tap if I get the MCTD diagnosis through her. And I would be more than compliant at doing a spinal tap just as long as they MRI my back first to make sure it's not causing the nerve problems. I just don't see any reason for a painful procedure like that and it may not be necessary. Let's look at the obvious first, huh..

I don't think I've hit the right doctor here for treatment of spinal problems, but I'm hoping he can help with that. I do not feel like my PCP wants to deal with it at all unless it's to just toss me back in PT. And I want a doctor I can rely on to help me.

Last edited by neveragain444; 03-22-2011 at 07:40 AM.

 
Old 03-22-2011, 07:35 AM   #5
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Re: Can you have MS and an autoimmune disease both?

My cousin lived in the mountains of VA (we had to drive into WVA to get to the mountain). He went through CFS and minus the bladder,esophagus, and stomach problems, he shared much of what you are experiencing. It took him just over 10 years to "recover". He left the mountain and his health has continued to improve. It is unknown if environmental factors were involved.

You have a full plate of things going on. I wonder if there might be an environmental component? (non-medical opining!)

If you contact your local MS Association or Society office, they might be able to help you in locating a neurologist who works with MSers. My aunt had to drive about 2 hours into VA to find one who ran my cousin through the MS testing before settling on CFS.

I will keep you in my prayers.
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Old 03-22-2011, 07:54 AM   #6
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Re: Can you have MS and an autoimmune disease both?

Well I expose myself to toxins everyday with cigarettes, so who needs an environmental factor for that. Even if there was one involved, I can't just up and move. My CFS was diagnosed based on my fatigue and that my ANA was positive. I also have EBV but I do not think it was active. She said I had an autoimmune dysfunction and could count on being sick the rest of my life. And yeah, she was right. I have noticed that people get diagnosed with CFS for other reasons, not autoimmunity, but that is how I got diagnosed. My current doctor sent me to a rhematologist who diagnosed Lupus, but he diagnosed it as fibromyalgia. My rhematologist said there was no way I had fibromyalgia, that had no impact on him either. The only reason I can see why he is so fixated on that diagnosis is because he doesn't believe there is anything wrong with me. He has seen my depressiveness first hand. So why not I guess. But I am tired of it. He can take that diagnosis and stick it up his hindend.

 
Old 03-22-2011, 08:22 AM   #7
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Re: Can you have MS and an autoimmune disease both?

I had an aunt who had lupus. If lupus was present, the doctors should be able to tell much easier than to diagnose MS. The good news is that if you work with an MS neuro, as they run you through the tests, they will likely discover your problem. MS is diagnosed by elimination. The neuro will have to eliminate over 400 disease possibilities. You could have fibro and MS or (fill in your disease) and MS. A good neuro will help you sort out your diseases and if you have two different diseases, it might take some time, but a good neuro is worthy of the task. I drive about 2 hours each way to see my neuro and she is worth it. I wish the same for you= a good neuro- not the miles!!
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Old 03-22-2011, 09:06 AM   #8
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Re: Can you have MS and an autoimmune disease both?

I have a good neurologist, I am not in question of. Why would other diseases have to be eliminated as a factor when MS has clear clinical and diagnostic criteria? MCTD isn't a neuropathic disease, it's a connective tissue disease. Since you can have more than one autoimmune disease at a time, I now do not understand why a diagnosis would depend on if I have MCTD or not.

 
Old 03-22-2011, 09:36 AM   #9
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Re: Can you have MS and an autoimmune disease both?

Quote:
Originally Posted by neveragain444 View Post
Why would other diseases have to be eliminated as a factor when MS has clear clinical and diagnostic criteria?
Hi neveragain444,

There is nothing clear about MS

MS is a Neurological Disease which is believed to have an autoimmune response.

There are numerous conditions which have similar symptoms as MS such as Lupus and Lymes Disease...as an example. Some of these conditions can also show lesions on a MRI. These other conditions need to be ruled in/out as part of the diagnostic process.

There is no single test, by it's self, that can give you a definite MS diagnosis. The bloodwork you have had done will give NO indication of MS but can indicated other conditions. Inflamatory markers in bloodwork does not indicate MS. At this time there is no blood test or blood test results for MS.
The Lumbar Puncture you will be having has been part of diagnsotic testing for diagnosing MS for a very long time. A lumbar puncture is also used in diagnosing other conditions.

I am not familiar with MCTD but it is true you can have more than one autoimmune disease.
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Old 03-22-2011, 10:22 AM   #10
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Re: Can you have MS and an autoimmune disease both?

I agree with Snoopy.There is no definitive test for MS. Thus, the neurologist is faced with the obstacle of eliminating everything else. Take 400 toothpicks and mark a single one, for example, and randomly pick them up without looking. If you pick up the unmarked one, put it aside and continue picking. This might be simplistic, but you might better see what your neuro must go through. For some MS is diagnosed quickly, but for many, the process requires the patience of Job.

Remember too that in the process of elimination, your neuro might find something benign that causes MS-like symptoms. With any luck, this will be your case.
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Old 03-22-2011, 01:34 PM   #11
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Re: Can you have MS and an autoimmune disease both?

Well then it is more likely that you have MS if you have the spinal cord & brain lesions to back that up and you have a positive spinal tap, right? May not be clear as 1.2.3. I'm sure I don't have any such lesions. Only place my doctor's ever seen such is in my liver & bladder. Hunner's ulcers & hemangiomas. I don't understand my past attack, I thought maybe it was a prescription reaction. Thought that this time too at the beginning, my chriopracter said it was so widespread, maybe it was. But we were both very wrong. It's continued to get worse with more symptoms. It used to go away and then keep recurring, now it never stops. It seems to get worse when my back hurts really bad. Neurontin calmed the back pain down alot but it did not phase the nerve sensations. Now I'm on Lyrica which for whatever reason, makes me feel dog sick, and makes my body have contractions in my legs, and back, that really hurts bad. I had to get a toradol shot yesterday to counteract the Lyrica. My neurologist said the Lyrica is stronger, but I don't see it as being any better.

 
Old 03-22-2011, 02:51 PM   #12
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Re: Can you have MS and an autoimmune disease both?

Unfortunately the spinal tap only shows positive results in about 85% of MSers. I have had 2 tests 20 years apart and both were negative. However, my MRIs are positive for lesions. For me, the MRI and my VEP were positive indicators as well as a dizzying array of MS symptoms.

Should you have a spinal tap? Probably. For me it was always the final test. There are many tests to undertake. As long as your neuro is following the revised McDonald Criteria, you should be in good hands.
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Old 03-22-2011, 06:10 PM   #13
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Re: Can you have MS and an autoimmune disease both?

Hi there and WOW. I just caught up with this thread.....there is an awful lot of really good information here, but Im also reading that you have been informed with alot of bad info from people other then us.

I have to agree (with everyone else) that there is no single test to diagnose MS, in fact its one of the hardest diseases to dx in the world. Some people go for years waiting for the dx...others, like me, get dx quickly based on test results and symtoms.

You stated you have NO lesions in your spine or head? You do NOT have MS. Lesions, which are very specific in size and shape to MS, are the #1 criteria for MS and lesions are what cause the symtoms. Another thing to mention, most MSers do NOT respond to Neurontin or LYrica. I have been on both, and Cymbalta as well for nerve pain, (not one has worked after months of praying)and its well documented that most MSers do NOT respond to this type of nerve pain drug, because the type of pain is simply not meant to respond to a drug which was developed for diabetic neuropathy....similar, yes, but the same- no. MS pain comes from not the limb where the pain is, but from a lesion in the brain controlling that part of the body- and therefore is much less likely to respond to a nerve pain stimulant.....instead, things like anti anxiety drugs seem to minimize the pain better. Narcotics work, but have their own issues..

Im one of the people who had a negative spinal tap....but should you do it? If you want to rule out Meningitis and PML, two very easily dx diseases which are always ruled out before MS, then yes, you should....however other then ruling out a few more things, you wont get a MS answer.

And lastly, where did you get the idea that people with autoimmune diseases lead lives like you described? you wrote 'And my daughter, she says I am a lazy peice of crap, all I want to do is lay around in bed, that my life is worthless. Does that sound like an autoimmune disease to you? It does to me.. I've seen what these people go through, and I saw myself". Two people in my family besides myself have autoimmune diseases, my 69 year old mother is a professional dance teacher for American Ballet Theatre! She is active and in better shape then I...and she has Rhemutoid Arthritis. I have a cousin with Lupus and she is working fulltime and has 2 kids. I myself have MS and work 50+ hours a week and go to school fulltime at Graduate level, not to mention have 3 kids! I wish for a nap, but lazy? No.

It sounds to me like there is some dysfunctional problems with your children talking you into believing that you are worthless. So you never did anything but work in a grocery store! You raised them, right? They didnt starve? And, Ill bet you were GREAT at your job! Not all of us can be white collar professionals, but where would we be, without grocery store checkers and shelvers? Why do you allow your kids to disrespect you like that? And, Im sorry to say, if you believe it, then you all need to get some counseling. You cant blame disfunction on a autoimmune disease and you cannot allow people to put you down like that and expect to feel good about yourself.

I sincererly hope nothing is really wrong with you, but I seriously think you need to get some help for yourself which includes anxiety help (meds?) and possibly counseling in order to regain your sense of purpose. There may be some toxicity in your life afterall...

I wish you only the best.
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Old 03-22-2011, 06:56 PM   #14
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Re: Can you have MS and an autoimmune disease both?

It's been alot of years since I had a MRI on my brain. But I have had x-rays on my thoracic recently and a CT on my neck. Alot of these lesions don't even show up though without dye do they, or do they? I know with my liver, only one shows up out of 5 without contrast. My back pain is what responds to neurontin. The tingling, burning, and other sensations I have are nonresponsive to it. Maybe the difference with your mother and I, is that I have not had treatment, and I am sick constantly. I've dealt with 14 years of fatigue, and I was not one to live a productive life with no energy to thrive. Before I started looking for answers last year if I could have the autoimmune disorder I was told I had in the past, I saw this show on tv of these women with Lupus and RA and it was not pretty. Their homes were like homes of hoarders, they couldn't work, if they did, they ended up having to give their career up, they couldn't keep themselves out of bed. That's the first time I could relate to seeing someone go through what I have been through. My home does not look like one of a hoarder, but in the past I have went as long as a month without washing dishes or doing housework, laundry whatever. I have not worked since this happened to me. I have tried school only to drop out. I did not take care of myself, bathing, brushing teeth, anything, maybe once a week or whenever I felt like it, which wasn't often. I used to cry when I was by myself with the kids when they were little and I had to fight to stay awake and take care of them. I used to cry when someone would ask a favor of me pertaining on going somewhere when I didn't feel like going. I sheltered myself inside and stopped living a normal life. When the flares would get so bad that I couldn't stay out of bed for weeks at a time, I'd want to die. We used to take the kids on trips, parks, museums, all that stuff stopped. It was a task for me to just drop them off at a friends house or just something as stupid as grocery shopping. I am fighting it now, things have changed, and I don't consider myself worthless, but I know I failed horribly at things, and let my kids down, and I wish I could go back and change it, but I can't. I was never lazy before I got sick, I don't consider myself lazy now. I am more understanding to myself about the situation than my kids are, not to worry. I did start back on Lexapro yesterday, I'm not having anxiety or depression issues right now, but I wanted to attempt to quit smoking, and I think I've changed my mind on that though.

 
Old 03-22-2011, 07:16 PM   #15
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Re: Can you have MS and an autoimmune disease both?

Sweetie,
I know that everyone handles things differently...but Ill point out that My mom who has RA, doesnt do ANY treatment. She is amazing, Ill admit, but she is a master ballerina!

You asked about lesions...the type of MS lesions we talk about here, will NOT show up on a CT scan or Xray. When I was first having problems, my doctor thought it was a pinched nerve causing my pain and numbness- he sent me for a CT Scan...it was there, that the radiologist noticed "abnomalities" and called in a Neuro to review...that Neuro is the greatest! Even though he isnt a MS specialist, he was 99% sure and referred me to one who did the tests and gave me the dx, but in the end, I still see "that" neuro because he is an angel!

Speaking of treatment. I take Rebif for my MS, its an injectable which is supposed to prevent me from progressing. Does it? Apparently, but no one can absolutely say that its not "just the course of my disease" that I havent had any additional symtoms/ relapses etc. I have over 50 lesions, all in my head. Im a straight A student who has a highly stressful job...I keep up. I do not take a single other drug at all. I tried nerve pain drugs- no relief. I tried bladder drugs- I wasnt able to fully empty so they were useless to me. I tried things to keep me more awake and fight the fatigue- they made me jumpy and nervous! I gave up. I bang my shots and push thru the rest.

I know more then 100 people personally who have MS. I attend groups and have been to many of their homes. I have never seen a single home which didnt look like it was taken care of. My real life job, is in Hospice. Without saying anymore- I see people with terminal diseases daily, who keep up with their housework OR have their families helping them to keep their homes nice. There is no excuse for what you saw on TV except that its---TV. Exxagerated beyond belief. Dont allow what you see on televison or what you read on the web to control how you feel about yourself. Do not allow anyone to tell you "you cant" do anything...every choice we make in this life, WE MAKE. No one makes for us.

I still am hearing from you that you have alot of negativity in your life. You also mentioned it has been alot of years since you had a MRI. Go get one. With and without contrast. And, if you are not going to do the contrast, yes, lesions will still show up. They will NOT glow, so the docs wont know if they are new or old, active or dying lesions- but they will appear. Its worth it to have it done. Cspine and Brain. If you have MS, thats where they will most likely appear. We do have other posters with lesions in their T spines and lower- but most likely, Cspine and Brain will determine if there is anything at all there..

You have alot of misinformation and thats a shame (and why we are all trying to help you) which leads me to wonder, who is managing your health care? Do you have a single doctor whom you have nothing but confidence in? Maybe its time to start over with someone else if not. Your physician should never dismiss your fears or thoughts- and if you are leaning towards something is wrong, only you can be your own advocate and keep pushing for answers.
As far as MS goes- you absolutely NEED to start with new MRis. Lesions can be too small to detect one day and be big enough to show up the next. Thats why during the dx phase, most Neuros will MRI every 6 months for 2 years...

Take a look at the revised McDonald Criteria...its the way that docs dx MS. It will tell you what they are looking for. You must meet that criteria to get a dx. So far, nothing you have said sounds MS like...but, if your tests are that old, its time to repeat them and rule out some things.

stay strong.

Never- I just decided to take a look at your other posts. I only went back as far as a month and was absolutely surprised by what I read. You have so many posts on SO many drugs- and so many issues. Im not judging you, but I definatley want to reiterate what I wrote. Its time to find a new doctor. One who will deal with your issues and stop steering you all over the place, or are all these drugs and all these separate issues coming from different doctors? If thats the case, then its time to find ONE doc who will work with you. You also mentioned quite a few antidepressents- who is monitoring those? And, is it time to have them adjusted? No disrespect intended, but the stuff I just read explains some of what you are going thru emotionally. You must start giving yourself credit!!! Youre handling quite a bit. You deserve to be happy, not depressed. Mostly, you deserve to have a doctor on YOUR side and not one who is throwing pills at you and sending you on wild goose chases looking for reasons for your pain. Please advocate for yourself...you deserve to feel good about yourself.
Nikki
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Last edited by MSNik; 03-22-2011 at 07:28 PM. Reason: additional info

 
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