A Thread for Newcomers Worried about Multiple Sclerosis (MS)

[murdoch1234]

thanks for writng such a long and informative piece of info it reallt helped

[Whiskas]

 

[luckychrms055]

Oh thank GOD for this board!  And what a really nice post that was!  I'm a new person here who has been dealing with anxiety for many many many years now.  I'm 33 years old now and during my lifespan have had brain tumors, MS, ALS, throat cancer, breast cancer and just about every other disease in a medical book!  I'm kidding of course!  But a few weeks ago I had muscle twitching and wondered what could cause that, so I got online and googled it!  BIG MISTAKE.  I never even knew what ALS was before I searched muscle twitching.  So of course I was conviced I had it or MS. I couldn't eat or sleep and it finally drove me to the ER.  The doc took one look at me and said you are having a panic attack.  But to ease your mind we will do a CT scan and a full blood panel, check your heart and everything we can.  So a hour later the test came back FINE.  He gave me Xanax and told me to go home, and gave me a name of a good center that deals with anxiety.  I tried to stay off the computer searching things, but I couldn't and then I ran across this page.  Thank GOD!  This page helps me deal with my anxiety so much.  In the back of my mind I still think about ALS and MS and wonder if I'm slurring my speech(sometimes I do) but anxiety causes that too...the docs know how I am so I should trust them it is just anxiety, like they said if you had those diseases you would KNOW IT.  Thanks everyone for being here it is the best anxiety relief for me!

[Deegurrl]

I was actually "told" by a dr in the ER one day that I could have an "atypical presentation" of MS.  It was the worst thing I've ever heard and my mom got scared out of her mind but thought it was really stupid.  My dr has never said anything like this nor has any other dr I've ever seen.  Ever since then it haunts me.  Now that I feel like my left arm is partially asleep and pain in my forearm muscles is happening I keep thinking "Omg what if she was right?!" I know that is probably stupid of me but ugh.

[carrie1964]

Hi all,
I`m new here and I was going to do some browsing and then post an introduction, then I saw this thread. I actually started experiencing anxiety AFTER I was diagnosed with MS. I never had a panic attack in my life until I had an MRI.The MS started the whole anxiety issue for me. 

While all of this is good advice, I think it needs to be said, SOME anxiety symptoms can mimic MS. That is why it is SO important to get the MRI`s and spinal taps and other test. These days in MS, time lost is brain lost. The drugs need to be started ASAP. In fact I was under treatment for three months before the official diagnosis. I cannot tell you how many friends I have with MS that were told it was anxiety, to only have MS diagnosed later by an MRI...........

[shrublet]

I agree that if someone is showing potential signs of MS then they should have it investigated, Carrie. That one is a no-brainer. But the issue on this forum is the second, third or fourth MRI, the downward spiral of obsessions and the lack of trust in the medical professionals. (Not to mention a plethora of other things... but that's another discussion.) I think Pan has already made that clear in his post.

I cannot tell you how many friends I have with MS that were told it was anxiety, to only have MS diagnosed later by an MRI...........

However, a lot of folks here are pretty sensitive and comments like that can cause a lot (and I do mean a lot!) of fear. So please just keep that in mind for the future.

[sixpack]

I agree with shrub, Carrie.  Many folks here think minor aches/pains are MS.  Then they go to the doctor.  The doctor tells them that they have no neuro signs of such a disease but orders the MRI anyway.  The folks get the MRI, it comes out clear, but many of us still don't believe the doctors and the tests.   Me, personally, I was very fearful of MS.  In 1997, I had my first brain MRI.  It was clear.  I didn't believe the results.  In 2000 I started the MS fear again.  I went back to another neuro.  He believed I had back issues.  I had EMG on my leg, NCS and lumbar/thoracic MRI.  I was fine for a while.  In 2003, after the birth of my 6th child, I started down the anxiety road yet again.  This time I called my OB/GYN and got on zoloft.  The last time around--this past year--I was fretting yet again.  I had a MRI with and without contrast on my brain and cervical spine and EMG/NCS on my arms.  I still don't have MS.  I do have disk issues/and bone pressing on my spinal cord mildly.  Luckily I believed the doctors/tests this time.  Hopefully I won't go down this well trodden road again.

I`m new here and I was going to do some browsing and then post an introduction, then I saw this thread. I actually started experiencing anxiety AFTER I was diagnosed with MS. I never had a panic attack in my life until I had an MRI.The MS started the whole anxiety issue for me. 

And it is pretty common thing to have anxiety start as a result of a pretty major diagnosis. 

I am glad you got on treatment right away.  Obviously your doctor/s saw some pretty substantial indications that you my have had MS before it was officially confirmed.

[carrie1964]

I`m sorry if my post was out of line.....I see now I was being insensitive to members who have genuine fears. I `ll take off my MS advocate hat when I`m here . Sometimes it becomes second nature to assume the worst with this and I often forget how many people are tested and found to not have the disease.

Let me clarfiy, many people I know, never got that first MRI, and I think that is why so many of us with MS are defensive. If their doctors had ordered that first test, time could have been saved.

That being said, I did get that first MRI and even with 10 lesions, my docotor could still not say for sure. Previously, the criteria was that you must have two attacks, seperated by a period of time AND different sypmtoms with physical evidence or MRI evidence. My nuero had begun treating "suspected" cases with high dose steroids and Copaxone, that is now the stance of the FDA. It wasn`t until I had a second , devastating attack, that it was confirmed.

Four years have now passed, and as bad as it was for awhile, the good news is....it`s not so bad!! I am back to living a full life, I`ll never run marathons again, but I do everything else I want to! MS is simply not the end of the world. For now, my bigger problem is my anxiety Going to read now, sorry if my first post was out of line........

[sixpack]

HI Carrie

I'm glad you clarified.  I know 5 folks with MS.  And their attacks were substantial enough to be quite assured it wasn't anxiety  I understand your feelings and frustrations.  I am glad your meds are doing a good job at keeping attacks at bay.  Welcome to our group.  I look forward to reading your intor.

[shrublet]

Hey Carrie,

Nope, it wasn't out of line. And I agree that MS advocacy is most excellent- I'm glad you care enough about others to share your story. I totally agree with you that the first MRI is important- and I do know that even after that a diagnosis is tricky. But for most folks here, they're doubting an MRI that may be entirely clean. As you'll soon see, I'm sure!

Anyways, we're really happy to have you hear! I'm glad to hear that you're doing really well. I hope you'll post an intro for us- looking forward to it!

[Pan]

Carrie

Not really sure what issues you have with this thread as I believe I made it pretty crystal clear in the second paragraph that before anybody can have faith in any sort of a diagnosis, be this MS or anxiety, that this needs to be confirmed by a GP and specialist if necessary.  I have no doubt that people have been blown off with an anxiety diagnosis only to find out at a later date they have MS.  I also have heard of countless people who have been diagnosed with MS on the basis of an MRI only to have further investigations years down the line only to find out that they don't have it after all....ho hum, what can you do eh?...mistakes get made and nobody is immune from them.

This thread was written for a specific group of people.  Those people who suffer from specific somatic and/or anxiety symptoms and who despite being diagnosed with anxiety refuse to believe this diagnosis and constantly believe themselves to actually have MS or other neurological issues.  There are a huge number of people who suffer from this thinking process and the thread was started just to show just how common it was amongst health anxiety sufferers.

[jerseyguy]

 
Hello Everyone,

I am a 37 year married father of three boys ages 6, 4 and 2. I began with dizziness/brain fog about a month ago after having a couple of alcoholic drinks. The brain fog is still with me today but not as much. I went to my doctor and he said it was vertigo and gave a prescription. Then 2 days later I woke up with facial numbness. It felt like I had a thin rubber mask on my face. Anyway, I quickly went on the web and MS kept coming up. Of course I freaked out. The next day I felt like the left side of my body was a little numb. I quickly went to the emergency room. The emergency doctor said it was vertigo not MS. I decided to go back to my primary doctor and he referred me to a neurologist which had me take some MRIs of the brain that same day. The next day she called me up and said they found 3 lesions in my brain. She it may possibly MS or Lyme disease. I set up an appointment with the MS doctor. I went on the web and looked up all the MS symptoms which seemed to match my symptoms. The next 3 weeks I got 2 anxiety attacks and I was in a deep brain fog for about a week. The symptoms I had were numbness on the left side of my face and a rubbery feel on my entire face. I also had fatigue symptoms that lasted 3 days. I saw the MS doctor and he said that the spots were very light and he was not convinced that it was MS. So he had me do a second more intense MRI of my brain, thoracic and spine. The results were as follows: The MS doctor found two small dots but he said it was definitely not MS. He said my MRI and symptoms do not coincide with MS and it’s probably depression. Ok it’s not MS then what are the dots on the MRI from? He said it could be from migraine headaches which I did get when I was younger. Can anxiety and depression cause me to have the burning feet on and off, numbness on the left side of my face and a rubbery feel to my face everyday for the past month? Has anyone experienced this?

Thanks,

JerseyGuy,

[sixpack]

Can anxiety and depression cause me to have the burning feet on and off, numbness on the left side of my face and a rubbery feel to my face everyday for the past month? Has anyone experienced this?

i've had a lot of weird things happen to me and I immediately thought it was MS.  Burning feet, yes.  For me it was numbness on my right side.

I have been told or I read, don't remember which, that migraines can cause white spots on the brain. 

[lebaneseboy]

my story is that i had some symptoms back in december during a stressful time, the first neuro said anxiety, the second did tests and my reflexes were gone, and my vep's came back abnormal, yet i think maybe i am nuts, am i?? but what about the test results, and btw i have been on copaxone for 90 days, yet i still think maybe i am nuts, but i cant decide please reply to me.

[lebaneseboy]

also i forgot that i have used a cane since january, now back to normal, but foot drop i was going up the stairs yesterday and fell, also last week,i was walking and my foot dropped and i fell. so idk my mris were good, spinal tap was moderate high, and so am i going crazy but i cant decide can anyone for me?

[sixpack]

lebanesboy

I'm not sure what to say....  You are on a med given to those with MS.  Does the second doc think you have MS?  Are you seeing the neuro regularly?  And if so, what are the next steps the neuro has for you.  You may well have anxiety...  However the two can coexist.   

[KrissyNicole]

This kind of made me feel better.

Was it the tingling? The pins & needles? That damned annoying twitching eyelid that just won’t let up?  Was it that weird thing when you keep seeing the flashing in your periphiral vision?  The strange sensation in your throat where you just can’t swallow?  The constant muscle aches and cramps?  The constant small joint aches and cramps?  Do you have that weird internal vibrating feeling?  Was it the percieved weakness in all your major limbs?  What about the foot drop you have been noticing, the clumsiness, finding the car keys in the fridge?  Was it the chronic constant fatigue, that feeling when you wake in the morning like you haven’t actually gone to bed?  What about the myclonic jerking, that bizarre moment when your whole body jerks like you have had an electric shock?  Was it that constant twitching in your calf muscles that looks like you have a bag of worms under your skin?  It could have been the parathesia, the feeling on your skin where one moment it feels sunburnt and the next minute it feels soaking wet?  Maybe it was the atrophy, you know, the muscle loss in your bicep, your thigh that is so obvious to you but what frustratingly nobody else can see?

Bolded ones are what I'm going through right now. :)

[topuklu]

I cannot tell you how many friends I have with MS that were told it was anxiety, to only have MS diagnosed later by an MRI...........

pff, well, i have read all 3 pages but i'm sticked to this sentence since yesterday. The doctors ( gp, neuro, psychologist ..) said "you have ONLY anxiety, there's nothing to worry about your brain."  But how can it be ? How can people with MS were misdiagnosed by anxiety if MS symptoms are more stronger than anxiety symptoms ? I just don't get it. So, according to it, all of us in this forum can have MS instead of anxiety!! Because we have the symptoms.

[Pan]

I cannot tell you how many friends I have with MS that were told it was anxiety, to only have MS diagnosed later by an MRI...........

pff, well, i have read all 3 pages but i'm sticked to this sentence since yesterday. The doctors ( gp, neuro, psychologist ..) said "you have ONLY anxiety, there's nothing to worry about your brain."  But how can it be ? How can people with MS were misdiagnosed by anxiety if MS symptoms are more stronger than anxiety symptoms ? I just don't get it. So, according to it, all of us in this forum can have MS instead of anxiety!! Because we have the symptoms.

Why does having similar symptoms to an illness or disease mean we have it?  If you woke with a cough would it be a chest infection or lung cancer....in all probability it would not be cancer but of course a health anxiety sufferer would jump stright to the worse possible scenario.

Basically MS is the worse possible scenario for our neurological type physical anxiety symptoms.

edit:  Just to add that physical anxiety symptoms can be far more powerful than MS symptoms.  The thing is that MS has a clear organic pathway to it's symptoms whilst physical anxiety symptoms do not...doctors and neuros look at this and not the symptoms on their own.

[topuklu]

 Hey Pan,

 I know you're right, MS is the worse possible scenario for our neurological type physical anxiety symptoms. But it's possible!
 And now, after i have read that sentence above, it's more possible..   

[Pan]

 Hey Pan,

 I know you're right, MS is the worse possible scenario for our neurological type physical anxiety symptoms. But it's possible!
 And now, after i have read that sentence above, it's more possible..   

Reading that sentence does not make a single thing more possible in reality....all that sentence has done has made you more fearful and increase your anxiety.  You either have MS or you don't have MS, you either have physical anxiety or you don't have physical anxiety....nothing you or anyone else says will change that.

Same as for the vast majority of us this would appear to be a control and risk issue for you.  You are overplaying the risk and grasping for control where none can possibly exist.  Me, You, or anybody could have MS, ALS or cancer...or maybe all 3 if we had some real bad luck but remember, this is a health anxiety forum and we are here for a reason.

You are correct, there are no guarantees.....it is accepting that and how you then live your life that is crucial.

[Gem]

As a ms worrier i help it finds to read as much positive stuff about the subject as possible, so that even if it is your 'worst case scenario' it actually isn't the worst possible thing in the world. Try to read about the fact that in the next 10 years or so, amazing new drugs are going to come out that they believe can cut relapses by up to 75% and in the next 15 - 20 years there will be many more plus possibly a cure!
Try to also remember the majority of people with MS live very normal lives. In the latest official statistics it said that less than 15% of people are using a wheelchair after 20 years since being diagnosed, and that's before using any of the newest drugs, so while we all fear it, and i do believe the main reason is because its a disease you cannot have control over, it really isn't a total death sentence.
Not to scare anyone but you could get in a car crash tomorrow and be paralyzed forever more, or have MS and just a few mild flare ups in your whole entire life. We just don't know.
I know what its like to be scared of it but, the only thing which helps me is going with the fear,rather than fighting it. Instead of saying ' omg omg i might get MS and its gonna be terrible' just say ' ok so, everyone thinks i have anxiety and it most likely is that but IF i ever develop MS, i will cope with it and take the best course of action for me'

[Silverburst]

What is the weird internal vibrating feeling? How does numbness feel on peoples faces and how long does it last.     I think that is what is happening to my nose.   It has been almost two weeks and it is on the bridge and sometimes moves under my eyes.    If I wear sunglasses I don't notice it, but when I am home alone it freaks me out and then I have to talk myself out of panic.   I never had this symptom of anxiety.   It feels like it is numb but when I touch it, it goes away for 10 seconds, then comes back, I can feel it so it really isn't numb.     

[sixpack]

What is the weird internal vibrating feeling? How does numbness feel on peoples faces and how long does it last.     I think that is what is happening to my nose.   It has been almost two weeks and it is on the bridge and sometimes moves under my eyes.    If I wear sunglasses I don't notice it, but when I am home alone it freaks me out and then I have to talk myself out of panic.   I never had this symptom of anxiety.   It feels like it is numb but when I touch it, it goes away for 10 seconds, then comes back, I can feel it so it really isn't numb.

numbness regarding MS is a deep, deep numb.  Those with MS( my understanding), the numbness doesn't come/go during the day, it lasts for days or weeks.  I vibrate with anxiety.  It was actually a new symptom in Nov '08.  I hadn't had it before.  I've heard it described as buzzing, vibrating, feeling like a cell phone buzzer.  it isn't seen, just felt.

I had my right side of my face, from half my nose to my ear down my jawline, feel this way--numbness, pain, pressure.  If I ate, I would get big pain as well.  I would stroke my face and it would spread along the run along my face.  It happened about 4 or 5 years ago.  then last Jan it started up again.  I knew this time it was a symptom of MS.  This is what got me into the neuro.  He wasn't very concerned about this symptom at all and thought it was connected to TMJ or ear/ sinus issues or anxiety.  I had a clear x-ray on my sinus' and no ear infection. I had two MRIs one on my neck (doc believed I had issues with that from different issues I had going on--which according to the MRI, I do) and one on my brain for my reassurance.  Even after I KNEW it was not from MS, it took about 3 wks for it to subside.

Try not to underestimate what anxiety can do to you.  It knows what you fear.

I don't remember if you've been to a neuro, but if you think it would help, go and get a good neuro exam.

[Silverburst]

Thank you so much for that answer 6 pack.     I really appreciate this.  I am having a full physical this Thursday with my GP.   The symptom with my nose is the buzzing, but when I touch it, it goes away for 10 seconds.  Today when I woke up I felt my body panicking so I went for a walk with my dog, enjoyed life and my buzzing and anxiety is 50% better.  I guess  my body is Hypersensitive and when the symptoms started showing up I freaked.  I play guitar and my picking and fretting hand work fine, I workout and have no problems with balance,  It just is that horrible doom feeling I get, but once in a while I see clarity.   Thank you so much.   

Silverburst