Question about symptoms before DX'd

[SonnyC]

I'm just wondering how many had extremely mild symptoms, like barley noticeable ones before having a major flare? Such as things like noticing a body part.. For a week, I've had this feeling on the side of my face.. I can't say numb.. Can't say tingling.. Just can say I notice the feeling of my face if that makes any sense.. If I put my hand on my face, I don't feel it...

I'm still extremely anxious.. 2 eye doctors (one being a neuro-optho with MS knowledge) says don't worry about MS.. But it's still eating at me.. So I don't know if the symptoms are anxiety or what..

My optic neuritis is still ongoing.. No treatment because its so mild (when ON started, vision was 20/20, 2 weeks later its only went to 20/40) and no pain.. Brain MRI was clear.. It's also anterior ON, not retrobulbar (the MS kind)...

One reason I seem to think it might be anxiety is if I take a .5 mg klonopin, it goes away and I feel a lot better.. I don't want to have to take klonopin or risk addiction.. This symptom is just annoying.. And the more I think about it, the more I notice it..

Maybe someone can relate..

Thanks!

[MSW1963]

I was dx 10yrs ago but had many 'weird' sx's that coincided with puberty. Originaly dx at 20yoa w/epilepsy.

ON, dyplopia, cognative problems, chronic UTIs. None were what I would consider mild, but definately milder than some ms'er with hospitalization after falling out of bed with paralysis.

I also had hives involving face & body that coincided with ON, very weird. When I was eventually dx'd, I had dyplopia, on, vision acuity 20/400, internal tremors, head tremor, major cognative difficulties, extreme insomnia, difficulty w/speech/word finding, executive cognative skills were very apparent. Sleep deprivation exacerbated everything.

CNS Depresents are often used for MS sx treatment. Klonipin is used for milder movement type problems, tremors, and I used it as a sleep aid.

I'm embarassed to admit it, but there were a couple of times I used a sip of wine to ease my tremors.

I never considered even my earliest sx's mild. Other than MS, I've always been the picture of health, athletice.

But I knew from the presenting sx's that something major was going on. When sx's cleared up, I each time I believed I had recovered.

[tellnhelen]

occassional signs

yeah, occassionally hip or foot would be working the same..didn't know at tthe time I had MS or that tnhe sxs were a mild flare

[isamadjul]

Mild then WHAM

I can only think back about 8yrs or so (I was always pregnant before that )...always thought I slept funny or pinched a nerve in my back. I would have a numb hand (um duh ms) or my foot would go numb (again duh!) . I even once lost the use of my left arm. I went to the PCP for that and he said anxiety and gave me meds and I left. Arm would be like that off and on for a month or 2 then it would be ok. Stopped taking the anti-depressants that PCP gave and kept working.

NOW I KNOW MS...and yes My DAD TOLD ME I WASN'T VERY SMART I said to him though, "if I went to the PCP every time something went numb I'd be broke on copays!"

isamadjul
(allyson)

[alliesmommy]

Hi Sonny C,

As you can probably tell, everyone is different. As for me, I was just dx 2 weeks ago officially, but my suspicion is I have had MS for years and didn't know because of the mild sx. I had general sx's, like dizziness, body aches, joint pain, some speech/word finding problems, eye problems, but until the numbness in my legs and feet and groin happened, thats when I knew something was terribly wrong.

Neuro told me it can be very difficult to dx MS in the beginning because many of the sx's are too general to go right to the MS dx and most docs aren't willing to get MRI's on such general sx.... so its a catch 22 until something major happens

[SNOOPY]

One reason I seem to think it might be anxiety is if I take a .5 mg klonopin, it goes away and I feel a lot better.. I don't want to have to take klonopin or risk addiction..

Sonny, what symptom(s) improve when taking Klonopin?

If symptoms improve when using Klonopin it is a real possibility your symptoms are anxiety induced, However, there are MS symptoms Benzodiazepine do help with.

Anxiety/panic attacks can cause symptoms that are similar to MS but it's not neceassarily MS.

Is there a concern of addiction form Benzo's? Yes. Not everyone becomes addicted to Benzodiazepines. If you deal with anxiety and/or panic attacks there are medications that do not have the potiential for addiction that can be tried.

A Psychiatrist is the best MD to see about treating anxiety/panic attacks. These meds are their specialty.

Symptoms of MS can be very subtle and easily brushed aside (for many years) and not given much thought until those symptoms influence daily living or the person has an exacerbation (relapse, attack, flare-up)

Best wishes.

[Lexie]

Well my story is that I've always had headaches (not migraines) and then in my late 30's I went to bed and woke up a few hours later and was unable to move the left side of my body for about 2 hours. Went to the ER and then to numerous testing procedures. The neurologist way back then said he knew it was ms but he would not dx it because I probably would not be able to get insurance or a job and there was no cure. The optic nerve test and the Spinal tap was normal. There were just white spots in my brain. In a few years I went to Mayo Clinic where they dx clinical depression. WHOA I am a very happy cheerful person. Minor symptons came and went with time like the numbness of the face would come and stay for months. Really bad Hives were present off and on for about two years and just came at all different times. Some days I could hardly lift my arms to roll my hair. I had an MRI Brain scan every year for about 10 years and nothing changed. So I quit doing them every year. Last October at 60 years old I had a major flare. In the hosptial for three days, out of work for about 2 weeks and fatigue for about 9 months. After millions and millions of tests (it felt like it) I have been formally dx and am on copaxone. I am still working but the fatigue takes a toll on me. I find myself very weak at times and rest often. BUT I AM ONE OF THE BLESSED ONES! I have functioned for 20 years without being unable to do anything I wanted. It is taking a toll now but that's o.k. My children are grown and there are very few things at this age I have to do. Sorry it's so long. No it's not the retirement I wished for it could be a whole lot worse!!!

[SonnyC]

Sonny, what symptom(s) improve when taking Klonopin?

Pretty much just that strange feeling in my face..

I was hospitilized with a severe panic attack (mimicing a heart attack) in July.. So I know my mind can create symptoms of a lot of things..

Would a real MS symtom of slight or mild numbness go away after a small dosage of klonopin? I do know they have small muscle relaxing qualities...

I'm just lost and stressed and anxious..

Thanks so much in advance.

[SNOOPY]

Would a real MS symtom of slight or mild numbness go away after a small dosage of klonopin?

During an anxiety or panic attack you are no longer breathing correctly.

When you get numbness or other strange sensation try breathing in and out in a small paper bag (lunch size), holding the bag against our mouth so inhaling and exhaling is done completely inside the paper bag.

If this works more than likely your symptom(s) are anxiety/panic related.

If symptoms are anxiety/panic related klonopin calms your mind down to allow normal breathing and the symptom(s) will go away.

I am not aware od Klonopin helpring with numbness when related to MS, although, someone else may have found it to be helpful.

[sunshine008]

hi

Are you currently in the process of receiving mri's and seeing a neurologist to investigate further to ascertain if this is MS?

As far as the Klonipin goes, someone else stated not everyone becomes addicted. You have only taken it a few times and plenty of ppl take ssri's or benzo's to relieve anxiety. So you are not alone in that regard. I also was in hospital going back two years ago, for chest pain that i got as i was driving to work. Little did I know back than I had MS. I also presented with swollen limbs, yet no one thought MS.

Long story short, you aren't alone there are alot of great ppl in here some officialy diagnosed with MS, others not and in limbo land. So, you are among friends here. So, if I were you and you know you best do what you can to relieve your anxiety for now. Alot of times during the process of finding answers, and getting testing it can be a nerve racking time filled with anxiety. it took me years to get my dx, and it drove me nuts in the process.

Also MS as i'm sure you have learned here can present in a ton of different ways, it's so individual the experience alot of times. no one thought i had it because my symptoms in the beginning mimicked rheumatoid arthritis.

If I were you id' go get an MRI, see a neurologist and you will feel more in control and less anxious once you get some hard answers. As far as benzo like klonipin relieving your symptoms, iv'e been taking xanax now very small amt at night to help with sleep and leg spasms. i dont' take it every night, and when i dont' take it i do not feel any residual effects.

good luck

[SNOOPY]

holding the bag against our mouth

I had meant to write:

holding the bag against your mouth and nose.

[Redwings]

holding the bag against our mouth

I had meant to write:
holding the bag against your mouth and nose.

Whew! I'm glad you cleared that up, SNOOPY. I was wondering how you going to pull that one off over the Internet!

[SonnyC]

My panic attacks have been very strange.. Never had problems breathing.. They always mimic real health problems..

The one in july was right before bedtime.. I felt a little light headed.. Took my blood pressure.. it was higher than normal.. 140/90.. (i usually run around 110/70).. Started getting dizzy, then chest pains.. checked my BP again, it went to 200/110 then called the ambulance..

They checked me out top to bottom (including a nuclear stress test).. Perfect heart and health.. Said it was a panic attack.. Had one in 97 that was so bad it led to 20 seconds of hell called Vertigo, I know MS'ers know all about vertigo..

As far as my MS status.. I have anterior, painless optic neuritis with a normal brain MRI. Saw 2 different eye doctors, the second being a neuro-optho.. Both comfirmed the optic neuritis and both said steroids aren't called for because theres no pain and the visual loss is so mild. Since the first mention of MS, my anxiety has been at very high levels. Every tiny sensation makes me think MS.. The only one thats hung around is my left cheek in the same side as my affected eye (the left).. If I touch my face, I dont feel it.. If I take a klonopin I don't feel it.. If I'm too busy to notice it, I don't really feel it.. But its been there for about 10 days on and off..

I'll see my primary tomorrow for a long overdue checkup and see what he suggests.

Both eye doctors said a neurologist is not needed at this stage and said not to worry about MS anymore. That its causing me to stress out..

I know my problems seem so minor compared to some of the issues you all deal with on a daily and I probably seem like a whiner. I'm just still scared...

[SNOOPY]

Whew! I'm glad you cleared that up, SNOOPY. I was wondering how you going to pull that one off over the Internet!

Wow! Oops! lmao!

[als5445]

Yes. I had depression, a feeling of "laziness", and bladder symptoms for a few months leading up my first relapse.

My second relapse I had a small spot on my tongue that just felt off for a while, as if it was maybe burnt, then my tongue and jaw went numb.