Possible MS

[treebranches]

Hi.  I'm in the process of figuring out what "I have".  I've read enough information that my MD in self-diagnosing is making me wonder whether I have MS, or not.

I started having "sleepy" legs from the hips down at random when I was 18, just whenever I would sit down my legs would suddenly have pins and needles.  It was every once in a while, and I didn't think much of it.

After having to quit ballet from a knee condition, I started having muscle craps in my legs.  It was mild at first until one Christmas when I was 20.  My legs were cramped in a bent position with all of my toes flared out and curled under... for the better part of three weeks, off and on to the point where I couldn't count on going anywhere for fear I'd basically cramp up and fall over.  Awesomesauce.

It quit happening after that, I was fine.  Until now, at 22, I'm having completely numb feet to where I can walk through freezing winter rain water in Seattle wearing flip-flops, I have burning searing pain in my legs and arms along with the cramps that have returned, the pins and needles in my arms, legs and face, tremors, itchiness all over, vertigo and dizziness, sensitivity to heat, general wtf pain in my arms and legs, and these great electrical shocks in my neck.

Oh, and today the back left part of my skull was spasming, too, which is pretty distracting.

I've just been to a doctor whose taken me seriously and I'm scheduled for nerve conductivity and electromapography tests.

I need someone to tell me that I'm going to be okay, we're going to figure out what's going on, because all this reading I'm doing is turning me into a hypochondriac and I'm pretty sure I'm on the road of MS travelers.

Encouragement encouraged and my apologies for the long post.  ;)

[Heather3418]

Please listen to Zulma.  She is exactly right.

Getting a second opinion, I believe, is only needed when you are not getting proper care and concern from your current doctor.  If you feel that your current doctor is way off base with his diagnosis; and your body is telling you that something ELSE may be wrong, than by all means, seek a second opinion.

Heather

[gooddays]

It all depends on the amount of confidence you have in your doctor.  If your doctor is an MS specialist, I would follow his lead.  If you  think he is just saying it  because that is what you want to hear, then by all means get a second opinion.  Whatever you do, if your first doctor prescribed one of the ABC drugs and you can afford them start using them until you see the second doctor.  You see it is to your advantage to start the medication on your early stages because the progression of the disease is slower than it will be at a later stage.

I hope that everything  comes back negative.  Take care.

Zulma

[treebranches]

So my question now is, when I get some answers whether it's a diagnosis or a guess for MS or something else....

Would all of you recommend getting a second opinion anyway, even if you're confidant in your doctor?

[gooddays]

I guess that we all go through the google stage when we first hear MS. I know I did 14 years ago.  All my friends did too.  It was hard to believe that it was happening to me, a person with so much energy and with such a bright future.We read every single article, website and lots of books related to subject, but you know, all the reading paid off because I wrote down a lot of things that I was feeling and I would go back to neuros appointments and ask questions about it.  Needlees to say, I went to 6 of them before I was dxd, and I have kept researching.  Once diagnosed try to get as much information as you can understand and if you don't come back to this great forum because some of us maybe able to help you or send you  to the right place so you can get accurate information

I am glad you came here, to me this is heaven.  in this forun everybody understands what you are going through and love and compassion is everyone's best asset.  Don't loose your faith and let our Lord guide your way to a diagnosis, but also let him make you understand what is going on.  Remember you may have MS, but MS does not have you!!!!

Happy new year and the health for you and your loved ones,

Zulma (Gooddays)

[Ley5792]

Well, you got my attention, dreamyeyes. I'm in that google stage of things. It can suck you in pretty quick. Just one more search....one more answer...

...absolutely never give up on living.

Thanks. :0)

[Jazzyfizzle]

Wow I agree, amazing reponses and so very true to the letter.  I am guilty as well of googling. Anyone would want to know what they are dealing with, it is only natural. A 'name to my enemy' is what I have heard it called many times on here. Your mind can fight an enemy it has a name to much more readily that a faceless, nameless one.

Fantastic suggestion from Dreamy eyes & her suggestion for things to accomplish while during a flair also. Just awesome.

Hang in there & you sure are going to be ok

Happy New Year

Jazzy

[Heather3418]

There really isn't a thing I can add to the great responses you have already received, but to tell you WELCOME.  We hope you will post here often.

Best Wishes, Heather

[treebranches]

Thanks for your comments and support!

I'm sitting duck until I go back and see my neurologist, who happens to specialize in MS, at the end of January.  The worst part is waiting and I guess it will help if I just put the mouse down... no more googling.  

It's just hard.  :/

[dreamyeyes]

     I agree with Carol also.....STOP googling!!!! I had my first really bad flair up in October and that is when I had 4 different docs tell me possible MS. I was freaked out to say the least!!! I knew nothing about MS. All I knew was they wanted me to see a neurologist (which I will have my first appointment next friday). My symptoms were so bad I had to take off work for a week and during that week I spent almost all my time right here on the computer doing what I called "research". Until one night when talking to my very sweet fiance on the phone and he brought to my attention that I was obsessing over this. You see I am the type of person who wants to get to the bottom of everything and not happy till I have all the answers to all my many many many questions. The one definant thing I found out during my "obsessing" sessions, was that there is NOTHING definant about MS. There are no easy answers to anyones questions and there is DEFINANTLY no getting to the bottom of things. Everyone is different and very unique, and I have found that everyone with MS, is double different and unique.
     That night on the phone with my fiance really hit home with me.....I realized thru his many questions to me (of which he would only let me give him one word answers, where I normally like to go into long drawn out explainations) that MS was not going to kill me.....not today, tomorrow, next week, next month, next year and probably not in my lifetime!!! But it can possibly slow me down from accomplishing alot of my goals in life or at the very least during relapses cause me to put off doing things i want to be able to do. Once I realized that this is a very slow.....very very slow....process of getting to a diagnosis I stopped doing all the research and started living my life again. All the time I was spending sitting here at the computer doing my "research" was time I could have been spending do the things I love doing, or spending with my kids. You can google all day long and all night, but the only FACTS you are really going to find on MS.......is that there are NO FACTS.....just other peoples experiences. And you are in the best place for that right here on the forums!!!
     So my advice to you is the same I as myself have done to keep my mind busy and off the limbo-land diagnosis waiting period......I sat down with a tablet of paper and a pen and ask myself "What do I want to accomplish in the next week....month....6 months....year?". "If I do have MS, What are some things I want to do while I am still mobile, can still get around with out to much pain?" and also IF I am going to have relapses like this last one that pop up from time to time, what can I do now to make those times more bearable for me and my daughters?
     You see....I set a goal 3 years ago to have my home paid for and to own my own business within 5 years. Well I am pretty much on schedule with my home, but have done very little with the business end of things since I have to work a fulltime job as well. My passion is photography!!! But its getting harder and harder for me to hold my camera steady for any length of time and my hands are going more numb and weaker every single day since this last relapse. At this rate I am sure that within the next 5 years I will probably not be able to take a picture without alot of blur. So I am looking at this relapse in the most positive way I can.....something to prompt me to work harder towards my goal of owning my own business. My license for the business will be finalized in January, and I can begin doing wedding photography while still working my fulltime job. The extra income will enable me to be able to do things with my daughters that i have not had the financing for, such as a trip to the water amusement park here in Texas that we have been planning for about 5 years now...lol.
     I truely believe that sometimes God has to put us on our backs to slow us down and make us take the time out of our busy schedules to reflect, to set new goals, to re-evaluate where life is heading and where we got off track and what we need to do to refocus. Limbo-land is a great time to do that. Never, Never, Never give up on getting a diagnosis, but ABSOLUTELY NEVER give up on living your life!!!! Sitting on the computer "googling", doing "research", "self-diagnosing" or just plain "OBSESSING" in my case........IS NOT LIVING!!!!!  This world is huge and full of all types of interesting things......let this boost you into learning something new, trying something different, at the very least it will take your mind off your ailments for a time. I have found that I am pretty much constantly in pain, and will be in pain whether I am lying in the bed, or outside moving around, sitting cooped up at home or out walking a nature trail photographing what i find along the way.
     If you or I do have MS.....it is NOT going anywhere....it will still be there tomorrow!!!! It reminds me of my EX-husband.....an extreme annoyance I just can't seem to get rid of !!!!!!!....LOL.

GOOD LUCK TO YOU....AND KEEP US POSTED ON YOUR PROGRESS!!!!!
                                     LISA

[essdipity]

Please do listen to Carol. She knows whereof she speaks. It's really normal to be sick of symptoms without answers. Since we have access to so much Web info, it's also normal and positive to use this resource to help ourselves. It would be strange if we didn't.

There does come a point where we have to slow down, though, because we can make ourselves nuts and accomplish nothing in the process. MS is a tough disease to diagnose without any one rule in/rule out test. There are loads of MS mimics that have to be tested for and this all takes time. Doctors are taught to do the simplest and least invasive things first. That's why a lumbar puncture usually occurs pretty far down the line. Most doctors will order at least a brain MRI fairly early in the process. Usually a couple a months elapse before all tests are done and results analyzed. If you have a good doc, he or she will shepherd this along pretty well. If you don't, that will become apparent in due course.

So please for now just keep with your doctor and let us know what's happening. I also advise you not to tell him or her you suspect MS. That will not go over big and might brand you as a difficult patient, which would mean you would not be taken seriously. Hang in there and let us know how things go.

ess

[grannyhotwheels]

First of all, you are going to be okay.  Also, I know from experience that you need to slow down on the google button.  It is very easy to become so wrapped up in your illness that you will get to the point of not believing anything your doctor says because you are so sure you have MS.

Let your doctor run the tests that he/she thinks is necessary.  I do think that I would ask for an MRI of the brain and spine.  Your doctor may already be planning on doing this but wants to see what the other tests say.  Give him/her a chance to diagnose you or send you to someone who can.

I know how difficult it is to sit back and wait but trust me self diagnosing can cause a lot of precious time towards your actual diagnosis.  I don't really know anything about the medical aspect of your symptoms but I'm sure Quix, Heather of some of the more medical minded people here will chime in on that part.  But, due to experience I do know what I'm talking about with the other.

Hang in there and you don't have to go through this alone.  We are here for you all the way.  Keep us informed with your test results and let us hold your hand during all of them.  Had it not been for my family right here I don't think I could have got through my diagnosis.  The love I still share here still hasn't stopped helping me through the lonely, angry, happy, and just wanting someone to talk to days.  You'll see what I mean.  Just wait.

I'll be praying,
Carol