Symptoms for MS?

[Hope38]

What exactly are the "concerning" symptoms for MS?  I've heard of so many having "odd" symptoms and being told its anxiety to later find out it was actually MS.  Why is it so hard to diagnosed and so easily brushed off as symptoms of anxiety?

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   The first symptom of possible multiple scerlosis (MS) is the hardest.  As the name implies multiple sclerosis requires multiple events seperated in time, or diagnosed retrospectively by neuroimaging (MRI).  The first attack is often called a clinically isolated syndrome, which may be labeled as MS after further symptoms develop.  MS is not a hard diagnosis to make, it just needs a comprehensive workup.  
   Typical first symptoms include:
-numbness in an isolated distribution, usually in an arm or leg
-optic neuritis (loss of vision in one eye, usually painful)
-Dizziness or sense of imbalance
-weakness in an isolated distribution, usually in an arm or leg
-L'hermites sign, when you flex your neck, an electrical shock radiates down to the arms and legs.
-episode of double vision
-Fatigue is also a common complaint, but not specific
   These symptoms typically last for 2-6 weeks and then get better, often back to baseline, or at least close.  There are more rare presentations, but the testing remains the same and remains adequate.
   After a detailed neurologic exam, which if not currently having an exacerbation/attack may be normal except for some hyper-reflexia the following tests should be performed:
-MRI of brain and C-spine with contrast and saggital flair
-Lumbar puncture for inflammation (tourtelotte panel/IgG index, oligoclonal bands)
-Evoked potentials (visual evoked potential and somatosensory evoked potential).

The most common mistakes in the diagnosis of MS are:
-not completeing the workup (some will stop after one negative test)
-Stopping after all tests come back normal after the first attack, which may become positive as more episodes occur.
-Patients who continue to pursue the diagnosis of MS, despite multiple tests that are all normal.  These patients often do have a diagnosis that needs to be made, but end up spending a long time ruling out MS.

I would also recommend seeing a neurologist in an established MS center, since they are well versed in the testing, and have connections to set up disease modifying therapy if the diagnosis is made.

I hope this has been helpful.

[lee77]

I'm 29 years old and have been having similar symptoms as well for about 2 years now. Have thought it was my thyroid but finally realized it's not - just went to neuro and had MRI. Will get results tomorrow. I can't eat or sleep I am so scared.

My symptoms are:
tingling and numbness throughout my body - mainly in the legs but sometimes in my stomach and back. It's mainly on the left side as well but my right leg is included.  I've also been dizzy now for about 4 months - very lightheaded as if I have had too much to drink.  and for a few days my left knee felt odd, like it was swollen but it wasn't.  I had a normal neuro exam with slight clonus.  And finally, I do have stronger tingling in my legs when I put my head down to my chest (l'hermittes?)

I'm terribly scared and am dreading the results tomorrow.
What do you all think? Are these symptoms similar to yours?

Thanks.

[rcs2]

Hi Hope,

Sorry for hear about your problems...
I've been pretty much in the same situation for about 1 year and 3 months, and it's really hard...
I've been to 3 neuros, 1 internal medicine specialist, a cardiologist, and nobody has a clue about what I have.
I am also terrified about MS, I can't stop thinking about it...
What are your symptoms???
Hope we can get an answer soon!! :)
Good luck

[Hope38]

Rcs, Hi...

I have had symptoms for atleast 10yrs, I also have Fibromyalgia.  

Symptoms are. Off balance, twitching, memory problems, feel weak, flu like, numbness feeling (but not numb just less feeling)tingling.  Muscles ache, water in the shower looks like balls of fire.  Just really odd things.

I don't fear MS, Many many people have this disease and live full functioning lives and they dont die from it.  I look at it as a chronic illnes (like fibro).

I would just like to know so I can have the appropriate treatment for whatever it is that I have.

Hope

[rcs2]

Hi Hope,

I think you are right... Not knowing what you have can drive you crazy.
I have some of your symptoms (I will find my old posting in this forum and send it to you).
Have you ever been tested for Lyme? I myself think I might have it... Everybody says the tests are not accurated... I was tested but it was negative (ELISA).

Good luck!! :)

[Hope38]

rcs, I have many other symptoms too....just so hard remembering all of them.

I doubt mine is lyme, I don't live near woods and I don't go in the woods or wooded areas.

Do you live in that type of area?  If you do then I would test again.

Hope

[jenn2]

hello-
i have been reading the questions and comments here over the last couple of days.  I also am having strange symptoms..mostly tingling..happens every day.  I went to have a MRI last week and this week was told that the results were "nonspecific" and inconclusive" but that there was an area of concern..possibly inflammation or demyelination.  because of my age (33) it is not normal so I am going to see a neurologist on monday.  i am very scared...

[Hope38]

Hi Jenn

I hope everything is Ok for you, I never heard of  demyelination
not sure what it means.

Im sending you good thoughts :)

Hope

[Hope38]

Hi Lee,

Good luck with your results!  I can identify with the dizziness, when it hits me I'm off balance ALL day...I won't even drive.

My doctor asked me what I did when this hits, I told him I stay put in my house and I dont leave until its gone.  Strange thing for him to ask...lol

HOpe

[young at heart]

Sorry to hear that your having difficulties.

MS usually presents itself with visual disturbances first,blurred vision or optical neuritis,loss of vision in one eye.One sided weakness,not having the ability to use the leg or arm.
MS has many symptoms and can effect everyone differently.A diagnosis to MS can be a very long process,a diagnosis of exclussions.
Usually during a neuro exam the reflex's will be hyper,babsinski sign present.
Your symptoms are wide spread,but consistant with MS.

Demyelination is where the nerves have lost there myelin covering and signals are being stopped.(example:an electrical cord loses its plastic covering and you can see the silver and copper wiring,the electrical current is being blocked).

Hang in there.No one likes to hear they have MS,the medical community has come a long way with this disease and there are meds available to help.

[rcs2]

Hi guys,

I mostly have tingling on my hands and feet (most common while I'm in bed), also have patches of "numbish" sensation that travels around my body and lasts only a few minutes. Fatigue, difficult in thinking, and a weird feeling all the times (for 1 year now) on the left side of my face and scalp.

I think the most weird symptom is the morning pain in the sole of my foot...

These are the ones I remember... similar with many of your symptoms. I don't have weakness, lack of balance, etc.

Please, keep me posted about your findings, and hang there. I think that having a disease like MS can be hard, but also not knowing what is going on with your body is even worse...

Hope we all can find answers!! :)

[Hope38]

How did your test results turn out??

Hope

[Hope38]

There are so many of us posting, who were you refering to when you said, "Your symptoms are wide spread,but consistant with MS."

Was this to a particular person or all of us???

Thanks

[lee77]

Thanks to everyone for your support.

Well, my suspicions were confirmed this morning and it looks like it is MS.  My dr. wants to rule out Lyme's but being that I live in NY City and don't go into wooded areas at all, it is EXTREMELY unlikely.

I must say though that I feel a lot "freer" knowing that it is MS.  I know it's scary but at least I know what it is after so many years.

Hope, can you tell me more about your experience when you first found out?  Also, are you able to live "normally?" to drive, to work etc.

And rcs2 - what about you?  

I'd love to be in touch if that's ok with everyone, as we are all experiencing these weird symptoms.  I think it helps to be in touch....

Thanks again for everyone's support.

[young at heart]

I apologize for the confusion.I was referring to all of you.My brain don't function that well first thing in the morning.I have had MS since 1998,but prior symptoms in my teens.There are disease modifying drugs that help and lesson the relapses.This disease is manageable and several people have very normal and balanced lives with it.
My first attack was in 1998 and the MS didn't reappear until last year.
The best advice I can share is avoiding stress.Stress can induce a flair up and cause symptoms to become worse and to advoid heat.This can cause temporary symptoms,once your body temps return to normal the symptoms disappear.
Get informed and learn all you can.Just remember your not alone.

Toni

[Hope38]

Is it a positive dx of MS?  I just wondered because they are looking into lyme too.

I don't have MS, I have symptoms though.  I was dx'd with Fibromaylgia (fibromyalgia).

I know many live long lives with MS, just another chronic disease.  Stay POSITIVE :)

If you need to talk we can exchange email addresses.

Hope

[jenn2]

Hello to all-

I have been so scared over the last couple of weeks wondering whether or not I have MS (or something worse)..and reading the posts here have helped me more than just about anything.  It's comforting to know that there are other people who are having these symptoms and dealing with them on a daily basis.

The thing that confuses me, is that everything I read says that MS symptoms usually come and go.  My numbness and tingling happens every day.  I feel fortunate to have gotten an appointment with the neurologist so quickly, but right now Monday seems about a year away.  The thing that worries me is the feeling that if it is MS, then my life will be shortened and that I will end up debilitated, not able to care for myself and die an early death..not able to see my kids grow up, see my grandkids, etc.  I know that sounds morbid, but those are the fears that are circling in my head.  The other thing is, I am currently a junior in nursing school and I am wondering whether or not that is a career path I will still be able to pursue.

[jenn2]

I forgot the question I wanted to ask....

What questions should I be asking the neurologist during my appt?

[Mezazinine]

It's very common for neurologists to look at a MRI and say lesions=MS. This is not at all true. They will do this even in the presence of systemic symptoms. Make certain that s/he rules out other conditions that can look like MS such as B12 deficiency, collagen vascular disease, thyroid disease, diabetes, lyme, etc.

[Hope38]

Hi

I have had tingles and numbness years ago and it lasted for months.  I started getting muscle twitches again this year, and off and on I get the dizzy off balance feeling.  Not room spinny, head feels off and I get nauseated.

I have never been checked for MS.  My symptoms did stop for sometime now the are returning YEARS later.

Hope

Ps...with ms you can live LOOOONG and be fully functional.  Don't stress :)

[lee77]

Thanks everyone again for your emails.  

Hope, thanks for your encouragement and support.  My dx was not completely positive- dr. said he saw lesions and wants to do a blood test for lymes.  If that comes back negative, then yes, I have MS. I have lherittemes sign though (electric shock sensation when I lower my neck) so I am thinking that it is MS, as this is very indicative of MS. Sorry to hear about your fibryo, Hope. Interesting that your symptoms have reappeared after so long.  Did you ever get a brain MRI?

And Jenn2, good luck at the neuro. I know I was a mess before I went too. I think i lost 5 lbs the week before I went. You should have evoked potential tests if your MRI was inconclusive. Apparently they do spinal taps too but I heard they are very painful and if you rule out other diseases and your dr. thinks MS, may be best to just stick with the dx.

I'm really trying to be optimistic and I keep thinking that my symptoms started 2-3 years ago. During this time, I worked full-time, got my MBA part time at night and got married.  If I can do this with MS (even though I didnt know it at the time), I am confident that people with MS can still accomplish what they set out too - just need a positive attitude. I'm sure Jenn2, you will be fine with nursing school, no matter what the outcome is.

Young at heart, are you on RX for MS? I know this is all happening so soon but I am trying to figure out if I should or not. I go back to the neuro Monday to discuss next steps so i guess I will know more then.

Thanks again for everyone's support.  Feel free to email me if anyone wants to talk:
***@****

[lee77]

Hi Hikerunner. thanks for your lyme's comments... question though- can symptoms come and go with lymes? mine are with me about 12 hours of the day with tingling in my feet for most of the day....

just wondering....

thanks

[lat67]

Hi Hope,

You sound excatly like me but I dont have a dx of Fibro.  Was wondering if you have ever looked into Lyme disease?  After two years of being sick and every test possible for MS ( which came back all clear ) I have finally been given a dx of Third stage Lyme.
At any rate let me know what your thoughts are and if you have ever gone down this road.

Lesley

[Hope38]

Jenn22 there is a support board for MS its on Webmd under message boards.  You can ask the Dr about your results and what she "thinks".  Then go to the support board they are a wealth of information :)

Lat67 when I first started out with symptoms around 9yrs ago (long time huh!) I had tingles in my hand/feet/scalp basically EVERYWHERE.  I had twitches, shakey, dizziness ( room would spin maybe once or twice but mostly like I was going to tip over to the side) I had numbness,wasnt numb but because I could feel if I pinched myself just felt less of the sensation).  I was diagnosed with ANXIETY disorder! This Dx was after some blood test, nothing more.  Ok, I do have anxiety no question about that.   I would get these weird feelings on and off after my first diagnosis but they would go away.

About 3 years ago I started getting flu like feelings but never no flu or fever, just felt warm and my Hips would hurt and all over my body would hurt.  I was dx'd with Fibro.  My hips hurt almost all the time now with a burning above my right butt.  I also have a problem with my hands.  They have always been really really red on the palms, but last 2years when it gets humid they get redder and burn, I cannot make a fist or anything because it hurts so bad.

I don't know what I have, I'm seeing a Rheumatologist in October for some answers!

I have read up on Lupus, MS, arthritis...so if anyone needs to know where to get info let me know, Ive probably been there.

Hope

[texasbelly]

hello everyone,
thankyou for all of your comments about this topic as I have learned  that I am not alone.
I too suffer from tingling and twitching.  About 5 months ago I started to notice twitches all over my body.  Sme days I would feel hundreds of twitches and some days just a few.  I worried about ALS, but with no other symptoms I must have benign fasciculation syndrome.  I was fine with that until I started to notice my right arm felt strange, I really could not pin point what it was, but just heavy or something.  Then the tingling started and then feeling like I had the flu.  

Now the tingling comes and goes along with constant twitching.  My right arm also does not feel any better.  As I type its weak and shaky.  

I have been to the neurologist and recently had an MRI. I will not know the results until the 19 of sept.  Until then I am terrified.
Is this MS?

[Mezazinine]

Fasciculations are not a symptoms of MS. I've read that their presence argues against a MS diagnosis. They most likely indicate a peripheral nerve or muscular disease.

[Hope38]

From ALL that Ive read and other peoples experience, your MRI can be clean and you can still have MS....and others have lesions show up on their MRI and do NOT have MS.  They do a test called Evok and lumbar puncture (I myself would not do the Lumbar puncture).  

Some people go 10-20 years with many MRI's and other tests before they are told they have MS.  I think this is one reason I won't do any neurological tests, seems most of the time they mean nothing.  I want to live, I don't want to spend my time in Dr's office.

Hope

[Hope38]

Ive seen many posts with muscle twitches on the MS support boards.  Seems to me that so many people with MS DX have this problem.  I don't know if it is related to MS but sure seems strange that people with MS have this problem.

Fibro patients have this also, also people with anxiety problems.  Its one of those symptoms that could be ANYTHING.

[rcs2]

Yes, Hope, you are right about the MRI.

Also, my neuro said that if you do an MRI in 100 normal people at least 50 will show some kind of brain lesion... and it's nothing.

What I really liked on her was that she said she is going to see me every 6 months and do a MRI very year. So I think it's important having some follow up, but also after you try all the possibilities (and tons of doctors) you have to hang on with your doctor, trust him/her and try to live as normal as possible.

At least is what I'm finding out by my experience...

[krisanlove]

3 days ago I suddenly had extreme weakness/sensation(not tingling) in my left arm and leg. I have muscle twitches when I lay down to go to bed. I had a CT and MRI done at the ER which ruled out any stroke diagnosis.  Today I go to see the neurologist.  I am scared, really scared.  I am 36 and have 3 small children at home.  I've had 2 friends whose parents have died from ALS.  I know this is jumping to the worst conclusion, but I am just scared.  I also have a strange feeling in my chest.  Not pains, but something is different.  I've tried to think of things that may relate to this.  I was on doses of broad spectrum antibiotics last June, including Augmentin and Levaquin.  My husband found a tick on our dog and then one in our basement about a month ago.  I assume they will test for Lyme, but wouldn't I know if I had been bitten?  Any words of encouragement would be great.
Kristina

[Hope38]

I would make sure I was checked for Lyme considering you had found ticks in your house and on the dog.

As far as ALS, its a pretty RARE disease.  It is strange that you have two friends though that had parents that died from this tragic condition.  I wouldn't worry about ALS if I were you.  I use to fear ALS for myself 10yrs ago, but it is a pretty progressive and quick disease.  After 10yrs I'm pretty sure I don't have this problem.  

Tell your DR about your fear and let him decide what avenues to take :)

Hope

[krisanlove]

Thank you, Hope.  I leave in 10 minutes for my appointment.
I'll post if I learn anything new.

[Hope38]

Just wanted to know how your appt went.

Hope

[Alesma]

I am not saying you do not have MS, but depending on where you live--if in the northern, or eastern states--could be lyme disease.

[krisanlove]

I had my appointment.  The doctor said definitely not ALS so that made me feel much better.  He said he didn't think MS because my MRI was perfectly clear.  He said we could possibly look at that later.  Because my weakness came on suddenly and on one side he said we needed to rule out a possible mini stroke that wouldn't show up on the MRI.
I had some bloodwork done, an ECG and bubble test to check for a hole in my heart.  I also have to wear a cardiac monitor for 4 weeks.  It seems silly since I only press the record button if I feel something strange in my heart.  I never really do!
I mentioned the ticks and he said not common here.

One week after my one-sided sensation, it went away, completely.  For 10 days I felt as if it had never happened, like it had just been a bad dream.  Unfortunately last night, Sept. 26, it came back quickly. I couldn't believe it.  It's exactly the same.  No worse, but I am still scared to death.  I've read about small strokes and how they usually lead to other strokes down the road.  I called my doctor and explained what happened to a nurse.  SHe ran it by my doctor and he said just continue on the monitor.  Does this seem  right?  Isn't there some other tests I should be having?  Does sudden onset on one side always mean stroke?  I've been taking an aspirin a day and that obviously didn't help.  Help!

[jules402]

Hi everyone
Looks like we are all in the same position here. I have been having more or less the same symptoms as you have been having for the last 10 months on and off. I have been tested for MS, brain tumour, lupus etc and I am now on B12 for neuropathy. I have since developed swollen lymph nodes in my neck so the doctors want to test me for metastatic cancer from the lungs and do lung X-rays. I am sure that I don't have this but it gets to the stage where everything that is suggested seems a possibility as there are no answers and you begin to feel like a bit of a hypochondriac. Good luck to everyone out there. It is nice to know that we are all experiencing the same concerns and worry - sorry about that but it is true!!

[Hope38]

Jules how long has your nodes been swollen?  I know tooth infection, colds and viruses will set them off.

With my Fibro I also have health anxiety and I'm on a message board for that and sooooo many people have worries about swollen lymph nodes.  Most of the time its nothing.  

[jules402]

Thanks Hope
I have had scans done of the neck and it looks fine. I am at the moment symptom free - for the last week - after having probably the worst couple of weeks ever. Let's hope it has gone whatever I had. I am back at the doctor next week again. I think it just seems strange the way things seem to flare up and last for a couple of months then go away again. The doctors cannot find what is wrong with me. Until this I was never at the doctor.

[TomMN]

I have had paresthesia in the form of numbness and tingling in my arms, hands, legs, feet, chest, abdomen and neck and have experienced lightheadedness, difficulty concentratiing and thinking for 14 YEARS!  The paresthesia is always there.  Always.  For the last 4 years, I have had left-sided neck and shoulder pain and headaches arching up the left side of my head behind my left eye.  During the last two months I "put my foot down" and saw a neurologist.  I had an EMG (normal) Brain w/o and w/contrast (normal) and an Ischemic Excersise test for slightly elevated CPK count (normal.)  Also, the usual round of blood tests.  I have been dismissed and told it's just anxiety.  I have seen a therapist for CBT/RET (cognitive behavioral therapy)to overcome anxiety, and I do a good job of NOT worrying.  I am pretty successful career wise, i.e., I do not let this get in the way of my goals, but I am right now so disappointed to come away from the neuro appointments and test without help that I'd like to scream.  I have never had a lumbar puncture or evoked potentials.  I am wondering if you or other readers have ever had symptoms last this long and what your opinion(s) may be.  Thanks to all who have contributed thus far, I don't feel so alone anymore.