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319532 tn?1250988576

MS and Lupus together

Well, i have been doing alot of research and it looks like i have both lupus and MS unofficially.Yes i am still waiting for my ANA but look at these symptoms. I have attacks that came a couple months ago, left and recently came back, only to leave again. My first attack came with mostly faigue, headache and joint pain. Recently they came back worse. Am constantly in the sun cause i live in the tropics so  don't know if it was because of that, but i got a red butterfly rash on my face together with some white patches of dried skin on my face. Then that disappeared and then came the joint pains, little fatigue, few headaches, all over body aches, many fasiculations all over (small spasms), muscle pains. When those started subsiding, i became weak all over with depression, difficulty swallowing and anxiety. However I have a histor of panic attack so the depression and swallowing with choking sensation is most likely due to that. The biggest worry is my muscles. Don't know when it started but i just know it was there after the first attack and remains. My muscles have tremors when i do eccentric contractions. Example when I contract my bicept, there is a little vibration but its not as bad as when i extend it. Like if i have some weight such as a dumb bell, and i slowly lower my bicept (extension) with it in hand, that movement is jerky. This happens in all, and i mean all my muscles.Even in contraction they seem to be contracting slower than normal. Example when squatting and i observe my thigh muscles, you can actually see them contracting and relaxing in a slower than usual fasion. Normally they're supposed to contract and relax so quickly that it just seems like a vibration. Hope someone understands as am trying to put this as simple as possible. Now all my symptoms are gone except my eyes heart at times, still have spasms/fasiculations and ofcorse my muscles. Strangest thing is my muscle strength doesn't seem to be affected. I know cuz i do gym. My blood works so far: some lupus latex test (not ana) was neg, Rheum factor:neg Liver, kidney and pancreas function:normal, CK levels:norm and sed rate remains at 3. Only abnormal results are: lymphocytes: slightly high, neutrophiles: slightly low, LDL(cholesterol): slightly high Any ideas?
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147426 tn?1317265632
Hi, and welcome to the forum.

Now, I have to speak to you straight on, Young'un.  (I can call you that because I am more than two and a half times your age and I have been down the road you are facing.  My other choice was "Young Whippersnapper"  :))

You are breaking two of the first rules of medical thinking.

The first is arriving at conclusions and worrying about them before the data are in.

The second is arriving at 2 diagnoses before getting the info that would tell you if there is one single diagnosis that will suffice.  In medicine, try to keep your thinking tight and clear.  Entertain a second or third diagnosis only when the evidence that documents the first does not explain other problems.

STOP DOING THAT!   lol

Nothing that you said suggests MS, least of all the early onset of all-over muscle twitches.  The people who answered you here are smart people, many of them scientists and PhDs.  We "know" a lot about Lupus as it is a mimic of MS and we discuss it often.  There is no way you can even be seriously considering Lupus without the necessary serologies back.

Researching symptoms as a whole is the worst way possible of coming to a diagnostic conclusion.  The entire clinical picture of history and exam, plus the suggested testing and ruling out of mimics is required, so, stop doing that also.

The field of Medicine has many routes and approaches besides the traditional Med School --> Residency --> possible Fellowship --> Practice.  There are ways of doing it with MS, blind, wheelchair-bound, with poorly controlled seizures,etc.  I have seen all of this.  You are digging a professional "grave" in advance without any of the necessary information.  Your anxiety is not controlled enough to allow you to enjoy life - you may not feel overtly anxious, but your perseveration on these unproven scenarios shows the real story.  You need a strong reality check.

The combination of your race and possibly your location make MS unlikely as you already noted.  The risk for MS is based more on where (the latitiude) you spent your first 15 years or so and is likely related to the Vitamin D levels you have had your whole life.

Yes, lightening can strike - but why worry about it.  Don't mentally end your life before you start it.  Get a grip and BE REAL.

I wish you the best of luck, but you are going to need some help with your health anxiety.   I'm not chasing you away, but trying to get you to take some action that will stand in place of hand-wringing and worrying about things for which you have no real evidence.  We'll all be here when your ANA comes back.  

There is NO relationship between a postive ANA and MS other than coincidence.

Quix, MD
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319532 tn?1250988576
thanks alot. I don't know what gait issue you're talking about though, maybe you misread. I will try my best to continue persuing med despite, though its going to be a long tough road. You are right, i am in a group less likely to get ms being a black male living in the tropics. However, people do get struck by lightening even though its rear.  
Helpful - 0
867582 tn?1311627397
Hi, scaredguy.  I can sure relate to your situation and your concerns!  I think probably most of us have used the Internet as a medical counselor and guide to the meaning of our symptoms.  And, to its credit, the Internet has actually helped guide many to their actual diagnoses when their physicians were unable or unwilling to do so.  You don't have to be a med student or a doctor, either, to fairly accurately self-diagnose.  For instance, my teenage son realized he was bipolar years before his doctors figured it out (much to our great stress and financial detriment).  So I don't think Internet research is a bad thing at all.  We actually should be partners with our doctors in pursuing and reaching a diagnosis and the Internet allows us to gather the information to ask relevant questions and make suggestions that our physicians may not have considered. Just keep some Xanax or some chamomile tea handy while researching so you can remain somewhat calm.

Some here have suggested an EMG/nerve conduction study - an excellent suggestion!  You should pursue EMG because of your muscle twitching, gait, and swallowing issues. I thought I had ALS and underwent such testing.  I was in the "right" age group for ALS (although it can occur in younger people - even teenagers - although rarely). Make sure the room the EMG is done in is warm (or at least not cold) because your muscles need to be relaxed for accurate test results. I suggest using a center known for doing EMGs rather than just a hospital or doctor's office.  Lab work usually is all negative for ALS patients - and that goes for MRIs too - all negative.  Ironically, ALS patients initially appear to be the healthiest people on earth!

Also, you might consider MRI of the brain and spine using a 3Tesla (the strongest strength magnet available).  That could rule you in for MS.  It is thanks to Internet research, specifically this website, that I learned about the 3Tesla.  Don't just use any imaging facility - find out what strength Tesla they have and, if you want the best shot at an MS answer, go for the 3Tesla.  That will give you the best chance of finding MS lesions if you have any.   However, if you have always lived in the tropics, it is very unlikely you have MS - so maybe you should save this testing for later although, with gait issues, MRI of the spine could be helpful.

Finally, don't stress out about not finding a job as a doctor.  First of all, you are not yet a doctor and you may not become a doctor.  But if you did become a doctor and you did have MS, chances are, you could still get a job  because we currently have a shortage of doctors in this country right now (without nationalized medicine).  Imagine if everyone in the country has insurance and can see a doctor - imagine the mind-boggling shortage of physicians that will create!!  Also the baby boomers are aging and are needing much more medical attention - creating greater need for MDs.  You would likely be assured a job. You could always work as a physician in a position requiring less physical effort. For reassurance about this, go the MSAA website and look at their mini-video about MS research/treatment study - the one that talks about alpha lipoic acid.  That video clip features a physician who has MS and is actively continuing to work as a physician!!  So there - now one of your fears has been busted by Internet research (Internet medical research is not always stressful, but can actually be stress alleviating!).

Good luck to you and all us other limbolanders and MSers out there!!

WAF
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319532 tn?1250988576
while thats a bit reassuring, am wondering if he go it in his first year of med-school. I mean this is one of the toughest programs someone can enroll in in terms of the shear volume of work to be done. Its not impossible, but it would be miraculous if i did have it and was able to complete not only med school but my residency also which in all are about 7-8 years.
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333672 tn?1273792789
Just want to say that although I agree with the above comments and it doesn't particularly sound to me like you have MS, even if you did, it doesn't have to mean the end of your dream of becoming a doctor. I am in a clinical trial and I keep having to see these different neuros and I did see one who told me he had MS. I hope you get some answers soon and that you will find some more peace of mind.

sho
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319532 tn?1250988576
thanks you two. i hope so too.
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Avatar universal
Best wishes with your rheumy.  I hope you don't have to wait too long for the results.
Take care,
Udkas
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195469 tn?1388322888
My first symptoms of MS came after a bout of a bad chest infection.  My right torso went totally numb and I had tingling going up and down that area.  The doctor's first thought it was a case of shingles.  Treatment for that didn't work, so I was sent to a Neurologist.  It was found that I had right sided weakness and the total numbness in my torso. I also showed what they call nystagmus in my eyes, where they shake back and forth. My reflexes in my legs were hyper and I was sent for an MRI of the spine.

A lesion showed up in my right side, thoracic spine.  I was then sent for an MRI of the brain.  By then, I had had two distinct "attacks."  I was found to have 5, possibly 7 lesions in my brain.  That was all put together with my attacks, my abnormal neuro exam and my symptoms and I was diagnosed with MS.

I didn't have a spinal tap for several years after diagnosis, but it showed the typical "O" banding in the spinal fluid, further clinching my diagnosis.  

Hope that answers your questions.  Keep hanging in there, you hear?

Best Wishes,
Heather
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319532 tn?1250988576
Many of your questions are answered in my first or subsequent posts. I know there are more criteria. You need 4 out of 11 to be exact. I stated above just some of the other blood work done, so am not just relying on the ana, it will be in conduction with my symptoms and other blood work that my rheumy will dx me.
Helpful - 0
Avatar universal
Hi there,
for a Dr to diagnose lupus you need to have more than one of the criteria, I think from memory it's 6 things out of a list of 10. There is certain diagnostic guidelines for diagnosing lupus.

ANA test alone is not enough, some perfectly healthy people have a positive ANA test, and ANA test that is abnormal can occur in other connective tissue disorders. Heather is right it is done in conjunction with other tests and symptoms and physical exam etc.

I think in the Lupus criteria for diagnosis there is a scale of 11 criteria and you need to meet something like 6, so ANA alone won't give that, as like stated some normal individuals can have a positive ANA.

You need to have photosensitivity, lupus rash etc., etc.

Please be guided by your Dr, has your Dr ever indicated that they are concerned for these diseases?  Have you told the Dr your fears as I think you should as then they might be able to help you.

Again as in my last post to have MS and Lupus together would be like trying to win lottery, it would be very rare.  

Many problems can be made worse by stress/anxiety.

I do think you are worrying yourself, can you make an appointment and discuss your fears/concerns with your Dr.

Keep us posted,
I hope your tests go well.
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319532 tn?1250988576
Hey thanks heather. The ANA am doing is the doc checking for lupus. At the time, ms wasn't yet in question. I to do hope that a cure is right around the corner cuz it seems like a serious nuisance. I think its one of those things humans will look back on and feel sorry for those who had to suffer unnecessarily. Just like pre-antibiotic times. Anyway i will let you guys know....thanks...what were your symptoms though heather?
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195469 tn?1388322888
My son in law DOES have Lupus.  An ANA test by itself means nothing.  It is usually done in conjunction with SED rate and RA.  In my son in law, all three of these tests were positive.

I have been diagnosed with MS for over a decade.  I have had a coupleof SED, RA and ANA's done.  One time was ANA was slightly elevated, but my SED and Rheumatoid Factor were negative.

I was also concerned when I noticed a butterfly-like rash on my face.  I was sure I had Lupus along with MS.  What I found out from the docs, was that I had simple Rosacea.
Add that with me being fair skinned and a red-head, I found out that Rosacea was much more common than I thought.

I know that you are very confused with all these symptoms going on.  I feel for you. 14 years ago, I hit the medical computer library hard, when I started having symptoms like MS.  I about drove myself nuts.  I literally sat there ALL DAY looking up, every symptom I had.  If I didn't have anxiety when I went in, I surely had it by the end of the day.

It turned out that I did indeed have MS, but it took alot of testing to rule out other disorders.  It's a shame that MS cannot be found in a simple blood test.

I wouldn't give up your dreams of becoming an MD one day.  NO matter if you have any physical ailment....you can do anything you set your mind to do, even if it turned out you did have a disability.  With the advances being made every day in the medical field, I feel sure that many cures are just on the horizon.

Best Wishes and don't be a "scaredguy" anymore.  Think positive and let us know how things go, would you?

Heather
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319532 tn?1250988576
Hey, thanx alex.
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667078 tn?1316000935
You are not alone

There is always HOPE.

Take it one day at a time.

Breathe

HALT do not get too Hungry, Angry, Lonely, Tired

Alex
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319532 tn?1250988576
No it isn't stressful. I came first in the last set of exams and am ontop things so far.yes am in my first year. My panic attack strted while watching tv for no apparent reason. However since then (3 yrs ago) haven't had any. just a bit anxious and the meds have helped a great deal since i strted them again. however the only bit that remains is for my health.whenever am sick i get a bit anxious but am better now, just being concerned espesially with all i was expecting to achieve.
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378497 tn?1232143585
Some of here DO understand "that part" and what the bloods for that part ought to look like, and you don't seem to have the blood results (at least not yet) that support lupus. You may have something inflammatory, but then...that's why you're at the rheumatologist. Anxiety meds don't always "take care of" anxiety, and certainly, you are experiencing some major anxiety here. Your posts make that abundantly clear. You also mention supportive parents, letting people down, fear about career, and if you're 22, are you in your first year? Must be. Is it stressful? Is it something that you feel may be too much? Again...neuropsych eval.

Bio
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319532 tn?1250988576
i am on anxiety meds so thats being taken care of. But you can't blame me when i was so looking forward to living my dream as a MD and making my upportive parents pround in the process.Now i'm giving them bills and stress. My rheumy told me it seems like i have ''medical student syndrome'' where we go crazy diagnosing ourselves. Anyways i will be giving the news in 10 or so days. However the thing is my symptoms seem to be relatively mild for now in reference to ms so only time will tell. But most of the symptoms above are lupus related and match quite well so i don't expect you guys to understand that part. Meanwhile am trying to do other stuff to distract myself.. thanks anyways guys and gyals
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Avatar universal
You have been given very good advice here by people who know what they're talking about. Yet you insist on talking all that away and instead are sure you have at least one serious disease, when the data are not yet in. Does this sound like a sensible thing to do? Especially when worrying like mad is only making you more and more anxious? And especially when you have a history of being sure you have illnesses that you don't have?

I don't know much about lupus, but from what you say there is virtually no evidence you have MS. You could possibly get relief from the pain in the back of your neck if you could relax the muscles, perhaps with a prescription med. Tension can do all sorts of things.

I do hope you can choose to change your focus, and that if you can't, you will seek help for that. Even if you do have one of these illnesses, you will feel much better if you can feel emotionally better too.

ess
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378497 tn?1232143585
I did, and they do not seem like a combination of lupus and MS.  The fascics are NOT typical MS symptoms. If you're depressed and you've got anxiety, you might want to look into a neuropsych evaluation to get a handle on your symptoms and how you're managing the stress of them. But with your complaints about the muscle twitching and with no weakness, what you describe does not sound like MS or really any of the usual neuropathies. Sounds a bit like benign fasciculations. But if you're having tremor on exertion and these twitchy things, you should probably have an EMG.

Headache and joint pain are also not typical signs of MS, especially the joint pain. The overall body complaints are also not an MS type of symptom. MS onset is usually localized paresthesias or weakness or optic neuritis, and usually does NOT involve global symptoms. A rheumatic disorder CAN cause global symptoms and joint pain, but as I said, your rheumatic results don't really point to anything yet.

It's certainly your own business whether or not you want to "pre-diagnose" yourself and worry about it in the absence of data, but that sort of worry will not help your existing symptoms of depression and anxiety. I really do recommend that you seek a neuropsych consult so you can get a handle at least on the two things you absolutely know you have: anxiety and depression. That way, you'll be better equipped to manage any stress that comes with the testing and the waiting and any eventual diagnosis for the other stuff.

Bio
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319532 tn?1250988576
Ok, nothing has officially been diagnosed yet. But did you read those symptoms! Like i said, a combination of lupus and ms. Yes the blood work seems good but thats not uncommon in early onset of those disorders. The one test i will count on is the ANA which is due in bout 10 days. My rheumy says its possible it could be lupus but is not counting on it. but the ana is needed. However at that time i didn't notice the ms symptoms as much. my eyes heart sometimes, few headaches, a slight but constant pain in the back of my neck and most of all the muscle symptoms i metioned above. At some point i was a bit weak and i still get afraid when swallowing or maybe am just not swallowing normally. am depressed...
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378497 tn?1232143585
The folks on here have given you good advice. You should definitely avoid putting the cart before the horse. For one thing, I'm confused. It may be buried in that block paragraph in your first post (we always suggest that people break up their text into small blocks so folks here can read them more easily), but...do you have an official MS dx? There are a number of disorders to which the symptoms you describe are related, but they do not sound much like MS at all. What you describe sounds rheumatic, but your bloods don't really indicate that.

Since your chief complaint appears to be fascics in the muscles, has anyone done any EMG testing on you?

Bio
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319532 tn?1250988576
Thankyou, but remember am also dealing with lupus symptoms and am male. Males are less likely to get these 2 but when they do, they're often more aggressive.
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405614 tn?1329144114
Hey there, once again, don't get ahead of yourself.  Remember, MS isn't a death sentence; some people have very little disability for many years, and MANY MANY people with MS continue to work for decades.

Having good doctors working with you, treating symptoms, finding the right diagnosis, and if it includes MS, taking disease modifying drugs; all these can help you live a productive life well.  

Take a deep breath; have you ever taken any meditation classes?  I've found meditating (breathing in and out, not having racing thoughts) has helped me deal with pain as well as my worries and frustrations about not getting a diagnosis, while for the last 15 months I've had symptoms that interfere with daily life.

I'm doing the best I can, and enjoying life.  This forum; all the knowledge, caring, and support really really helps.

Take care,

Kathy

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319532 tn?1250988576
am so afraid of what going to happen to me if i find out i have MS. Am a med student and am only 22. If i do find out i have MS then my dreams are crushed.No hospital wud hire me. If its only lupus then maybe but not both. Am getting symptoms all over but i have anxiety issues which make it hard to isolate the symptoms. This *****.
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