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?

[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.

[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.

[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]

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!!

[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!

[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.

[Hope38]

Just wanted to know how your appt went.

Hope

[krisanlove]

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

[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]

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

[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...

[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?

[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

[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]

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.

[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

[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

[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

[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:
***@****

[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.

[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.

[jenn2]

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

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

[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.

[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.

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