CIS Dx New Symptoms Starting

[HeatherG23]

My name is Heather & I'm 34yo wife & mother of 3 girls. I began having severe numbness in my face & tongue in December of last year right after my daughter's 5th birthday. I thought maybe it was stress related but my primary doc ordered me to go to the ER, where they did blood work and a contrast CT Scan - both were normal. So I followed up with him & he ordered an MRI, which showed 2 lesions but I wasn't told that it was something to worry about. Just that he wanted me to see a neurologist. Since this was right around the holidays and my numbness was fading, I chose to wait until mid-January to have the MRI. I remained very optimistic up to that point bc I felt ok and it was fading. So, my neurologist appointment was scheduled for almost the end of February bc they are so hard to get in with and she was wonderful! She spent an hour with me showing me my MRI images, explaining everything to me but then ultimately saying I had a "CIS of MS."

Of course I was shocked. I had been researching (aka Googling) and had only found my symptoms to be similar to other MS symptoms, but was in denial bc I'm an otherwise healthy individual who is mildly obsessed with good nutrition, juicing & eating mostly organic, and avoid toxins like the plague. So, the neurologist recommended B1, C, D3, & a multivitamin and told me to keep juicing and get sleep & to call if anything else happened or got worse. Also follow up MRI in 8-12 mos.

Well, about 1.5 weeks ago my hands started feeling weak when I held things for over a minute or so and 3 nights ago I began having burning sensations in my legs anywhere from 6-12X/day.

I think I should call the neurologist. I'm scared and I can't stand this feeling of not knowing what's next. What upsets me the most is that my whole adulthood I've avoided meds, even OTC pain relievers but my life is too busy to just drop everything and focus on just myself. I have kids that need me. I'll do anything I have to for them. I'm just scared of the meds.

Anyway, nice to read about your experiences and I hope to just relieve some stress by writing here and reading. :-)

[poohb3ar]

sorry to hear about your numbness! it stinks when face, lips, mouth, tongue and throat are numb.
i can have crumbs on my lips or messed up lipstick and never feel it!
numbness really frustrates me because it's a 'hidden' symptom and i've had people want to 'challenge me' on it! like 'if i poke you with a needle you won't feel it' sometimes i want to smart off and say 'maybe not, but you will!

your other sxs (symptoms) sound a lot like ones that i have had and are MS sxs. you should always call neuro with new or worsening sxs. especially if they last over 24 hrs.
sometimes it's nothing, but it's best to let them decide that.

i know it's easier to ignore & hope it'll go away (i've done that too many times - i was dx'd in 2002) only once in a blue moon do mine leave on their own. they usually have to be ushered out by steroids or else i'm stuck with them.

roids have slowed down and even reversed some of my numbness over the years.

MS is scary since there are so many possibilities and unknowns. but you have to take care of yourself, if you're going to be able to care for your children.

please keep in touch and let us know how you're doing.
hang in there!

praying you get some help and relief from these symptoms!

take care & God bless ya!

[22cyclist]

Hi Heather, and Welcome to MS World! We are happy you found us! The symptoms you are describing with the burning legs are what are referred to as sensory symptoms that we MSers get, and the neurologist generally don't treat. I get that one with the hot spots, and it drives me crazy! Your weak feeling in your arms and hands however are another matter. You should call about that if it lasts over 24 hours and is continual (which is the definition for an exacerbation). This is what she is looking for in you.

Another exacerbation would give her time and space to diagnose you with MS.

Now as far as the meds go, you can and probably should start a disease modifying therapy drug while you are still CIS. This will not help the damage left behind from your first exacerbation, and this may be some of what you were feeling, but it does help prevent future lesions and new exacerbations. My suggestion is to go to the National MS Society's website, read up on the drug. Each should have a link to the individual drug manufacturer, if not just google it. Then read the prescribing information. After all of that come back on here and look around our message boards under medications and see what people are saying. Be warned most are negative reactions because people who are doing well don't always have a reason to post!

MS is not a death sentence. Each persons path is different. Some continue to walk into their 70s, I am in a wheelchair in my early 40s. But its a fast one and thats all that matters!

So happy to meet you, oh, you might ask other mothers about when to tell your children. Mine were teenagers. You can also seek counseling for that.

Look around at all of our message boards, ask and answer questions and check out our array of chat rooms too!

Take care
Lisa

[Kimba22]

Hi Heather,

Welcome to MSWorld! This is a great place for support and information, and I hope you'll check out the many things MSWorld has to offer. But, I'm also sorry why you are here.

I also recommend you call your neurologist. If you do have MS, as daunting as it may be, starting a MS medication sooner rather than later may make all the difference in your disease course. My first thoughts were also my kids when I was diagnosed, which is why I never thought twice about starting one.

From the Multiple Sclerosis Association of America:

Several large clinical trials have been conducted to study each of these drugs separately for their safety and effectiveness in MS. Although differences exist in study design and specific findings, trials generally showed these common results:

-Reduced the number of relapses
-Reduced the severity of relapses
-Reduced the development of new areas of inflammation as seen on magnetic resonance imaging (MRI) scans
-Showed some evidence of delaying disease progression and/or disability
-Some may prevent or delay a second clinical attack (relapse) for individuals with clinically isolated syndrome (CIS). CIS refers to individuals who do not meet the criteria to be diagnosed with MS, but have experienced symptoms

You can also read more here: http://www.mymsaa.org/about-ms/treatments/long-term/

In the Medications & Treatment forums, there's an entire sub forum about the Disease Modifying Therapies. Like Lisa mentioned, keep in mind the tendency is for people to comment on negatives, otherwise they don't feel the need to say anything. Also feel free to ask any questions you may have!

Keep us posted and good luck ,

[Perennialz]

Hellos!
I'm new here too but I would like to give you a warm welcome.
My first bout with my "regulars" was weakness on my left side with fatigue last summer, in 2013 my CIU and my back quitting on me was my precursor of my whole health issues.

But the end of last year I got my biggest hit when optic neuritis, leg tremors and a loss of appetite appeared. The ON was detected and wound up in the hospital for a couple of days following more testing.

After my steroid treatments , around the beginning of the new yr, I had vertigo, and by the end of the month an electric charge going down my spinal cord, and my big toe, and sometimes my whole foot got numb.

I always get tingling which I don't mind, but the rash and hives I find annoying. Once in a great while I get an optic light show, last one was after
February, I had yellow/orange swirly thingies spinning around my vision for a spell. My memory and energy tanks on occasion too.

I hope my testimony of what I feel will help you in some way

[HeatherG23]

Thank you 😊

Thank you poohb3ar, 22cyclist & kimba22!

I'm so glad I found this forum. you are all so very kind and helpful. I really appreciate the warm welcome. I plan on calling my neurologist this AM to talk about my new sxs.