New to Limbo Land

[Cira]

Hi, all. I'm new here & currently in limbo land, the place we all love to hate. I came looking for support because I feel like no one in my life completely understands & I fear burdening them with too much before we know anything.

So....here's my (long) story. It started back in May or June, when my left leg went numb and tingly, and lost normal sensation (ie a piece of ice on that foot felt burning hot). I figured it was nothing, and it really wasn't painful, so I blew it off & after 10 days or so, it went away.

Fast forward to mid-October. The tingling & numbness came back in that leg, along with an intense feeling of cold- even though my leg was warm to the touch. After a week, I finally got a clue & went to see my Dr. He prescribed some Flexeril & a Medrol dose pack & instructed me to come back if that didn't help, or if the problem recurred. I did tell him it had happened before & he wasn't too impressed with me for not coming to see him.

Anyway, the meds didn't work. I drug my feet on making a follow-upappt until my right hand went numb. I saw my Dr 2 days later. He, in short, was at a loss. He ruled out some things, like thyroid & diabetes, but said that it no longer appeared to be a pinched nerve & that the fact that different areas & different sides of the body were implicated made him a little unsure. He ended up referring me to a neurologists after telling me he was essentially clueless & asking if I had any "weird neurological diseases" in my family. Comforting, right?

I made my neuro appt for 12/18, but since my last dr appt, things have gotten progressively worse. My whole left side is numb & tingly. My left hand is affected & both my hands, particularly the fingertips, are painful & sensitive to both touch and heat. My right leg is now numb, cold & very weak. I keep having small spasms in it. I've had bouts of dizziness, lightheadedness and slightly blurred vision. My coordination is also off- I drop everything & if I try to pick up something small, I usually have to try a couple of times before I succeed. Best of all, my new best friend is a squeezing feeling around the lower left side of my rib cage that I'm guessing is the wonderful MS "hug".

I feel crazy even thinking it, but I'm really afraid I have MS. I don't want to say anything to my family for a variety of reasons- I don't want to worry them & I'm kind of afraid some won't take me seriously. I don't even know if I take myself seriously sometimes. I also try to hide or at least minimize some of my symptoms so that no one will worry.

So, that's me in a nutshell. I look forward to meeting everyone & sharing this journey with you.

[October22]

Hello!

I'm in limbo, too although I either have MS or I'm nuts! Gotta love doctors!

I had a similar experience in that all of a sudden my right arm started tingling. Numbness spread down to my right hand, up to the crown of my head and down to my shin (all on the right side). Many tests and several doctors later, I'm waiting to see an MS specialist. Yay, me. If it helps to hear, I've gotten all feeling/strength back except in the palm of my right hand. The symptoms can go away, it just may take awhile. And the one constant I've found on the internet is NO ONE can tell you what will happen because EVERYONE is different. Yay, again. Would some consistency be too much to ask?

I'm still a newbie but I understand how frustrating and SCARY this is. I was so terrified I drove home from the doctor and spent 6 hours on the internet, researching. The "This Can Happen"s are the worst. What helped me is taking control of what I can take control of. I am a mother of four, with a husband and a busy schedule and am a mild control freak. Reading about how little control I will have was horrible so I decided to not listen to that part.

All I can do now is try to stay as healthy as possible, live my life to the fullest and hope for a cure....SOON!

I wish the best for you!

P.S. I haven't told anyone yet either except for my husband and best friend. I think I'll wait and tell people when I have to!

[LizPickOne]

Me, too.

Cira & October,

I feel your pain with not telling anyone. Like the both of you, have had similar symptoms (without the whole side of my body numbess, mine's more sporatic) but I'm always the caretaker, not the patient, and I never mention what's wrong with me. IDK if it's mostly out of fear that people will think I'm crazy or in fear that if they think I'm sick I'll be seen as weak, and I'm a fighter.

I'm a 26 y/o F, symptoms have been going on for a year or so, got my R/O MS MRI with and without contrast yesterday, EEG & EMG at initial visit with Neuro and have follow up tomorrow morning. My quest for answers also just makes me want to crawl into a hole and pretend there's nothing wrong. Like as I type this, I'm sitting at my desk and my foot is tingling. I hate that the symptoms constantly remind me that somethings wrong. I'm also SO SICK OF BEING CLUMSY. I'm an avid potter, and when I', at the studio, my nickname is "Liz Did It" because anytimes theres a "boom" it's always me bumping into something or dropping something. I'm so scared that this is MS and it's going to affect my passion.

I'm sorry for the rant, I just wanted to let you two know you're not alone.

[Cira]

Thank you!

You two are the best! I relate so much to both of you & I appreciate you sharing with me. Thank you so much!

October - You said it perfectly...I either have MS or I am crazy. Some days I feel crazy with all of these symptoms, so I could almost buy that explanation. Like you, I am a mother (of 2 -bless your heart having 4 kids!) have a very busy schedule (full-time student & work outside the home) and I am a not-so-mild control freak. Lacking control is hard, isn't it? I'm also trying to take control of what I can, but unfortunately, that list seems to be pretty short right now! As much as I don't want to find out that I have MS, a part of me would welcome it for the simple fact that at least it would be an answer & I could take some control back in the form of a treatment plan.

Liz - I completely understand what you mean about fearing this will affect your passion. I'm currently a student, and this semester has been difficult due to both the physical demands & the mental/emotional aspects of this unnamed problem of mine. I'm really scared that it will affect my grades, my chances of getting into other schools/programs that I may apply for...or my ability to do it at all. Right now, I have 2 kids, I'm a full-time student & I work...I don't really have time to be sick & at some point, something's gotta give.

I'm a little scared that I may fail to complete my biggest goal of finishing my degree. It's already been an uphill battle due to other personal/outside factors, let me tell you, and this is all the heck I need! So, I completely understand where you're coming from! Don't be sorry for your rant...I am willing to listen & it is nice to know that others understand you. I also know what you mean about not wanting to be perceived as weak. That is me to a T!

I am always the strong one, and I couldn't bear it if people saw me as weak. I have a great support system, don't get me wrong - my family & friends are amazing & I work with some of the best people on the planet. I know they would support me. But still....It's hard, you know? I'm no good at being "sick"! Anyway, good luck today & please update us on how your follow-up goes.

As far as not telling anyone goes, everyone close to me knows that "something" is going on. I just haven't really let on to most of them how serious it really could be. My husband knows it's probably bad, but I refuse to mention MS to him because I don't want him to worry. He is already SO stressed over this & I don't want to add to it unnecessarily.

My best friend does know that I fear MS, but only because she brought it up first. We both work in health care (although different areas) and she mentioned it to me because she knows enough to see that the signs are there & it has been a fear of hers for awhile. So I have talked to her about it.

Thanks again for your replies, ladies. It's always good to know you're not alone.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **