new to LimboLand

[happyvalley]

I thought that maybe I was just going to have a brief visit here--LimboLand, that is. My neuro has been sure that it was MS. . .but it is apparently not, or not yet. My LP results came back normal. The neuro says I definitely have a left-sided defecit and balance/vision problems, fatigue, etc--and this all says CNS problem, but not MS. She thinks it might be a "pre" MS episode and that in 3-5 yrs I'll have a dx. OR--she said it could be a weird virus or some other thing that we'll never know the cause of that's making me feel like this. She's prescribed an anti-inflammatory and an anti-fatigue drug to help with the symptoms. I'm supposed to see her again in 2 months or sooner if anything gets worse.

My mom is freaking out about the anti-fatigue drug. She's sure I'll become addicted. I'm a type-A go-getter--I have a million things to do-type personality anyway. . .plus, how will I know if the symptoms go away if I'm masking them? The dr says that if it's a virus that it should have run it's course in 6 months. I'm about 5 months out from onset of symptoms. . .we'll see. I just can't imagine not being able to run (I'm a runner) and feel normal w/o knowing what it is that's causing the problems. . .

Any advice on to medicate or not when you don't know exactly what you're medicating for? It would be nice if the symptoms lessened. . .is it ok to treat symptoms when you don't know the cause?

thanks for your help and welcoming me to the community--

HappyValley

[Want to feel well!!!]

Sorry one of your kids is ill...let's hope the other three steer clear!

I sent you a PM.  Hope it helps.

Wanna :)

[happyvalley]

It's called ProVigil. I haven't taken it yet. It's sitting on my kitchen counter and I keep staring at it :). I'm just such a abnoxious over-achiever, I honestly worry about ever being able to stop taking the little "mini-speed." I'm one of those that measures my self-worth based a lot on how much I've accomplished in a day. . .I spent most of the night up with leg twitches and what I think is "rest;ess" leg--where the tension just builds and builds until there's an unvoluntary twitch--then it subsides for a minute and starts again. Today is the day that I may try the ProVigil. It supposedly has very minimal sideeffects--if any. I have four kids and one is sick--I need the energy to be a mom today! :)

[Want to feel well!!!]

If I might ask, what is the anti-fatigue medication your doctor prescribed?

Wanna

[Want to feel well!!!]

In hindsight, so many things are clear to me now, but as things were happening it was just so odd.  As an example, when running became too difficult, I switched back to cycling, but when training for an event, rather than getting stronger, going father, and getting faster I wasn't.  It just didn't make sense.

Now vacuuming can exhaust me!  I hope to soon get my strength back and back in the saddle.  Did you happen to see my other post today?  I have a new doctor who is on the right track and I finally feel I will be feeling well again.

Good luck to you.  Keep in touch.  You are not alone in this.  

Wanna  :)
    

[happyvalley]

Thanks so much! I appreciate your post. It's such a weird feeling to be NOT diagnosed with MS after my neuro had been telling me for a couple of months that she was sure it was. I of course am relieved--but like you said, I know that something is not right. I'm waiting now for about two months to see if anything changes. . .it's so hard though to not be able to run, and all the other things that I normally do that I can't b/c of how I feel. The running thing may eem like such a small deal to non-runners--but it's adaily reminder for me that something is going on. . .

I appreciate your support.

[Want to feel well!!!]

The part about your post that really hits me is the running.  I used to be a runner (and a cyclist), and one day I had an off day during a run and that's when everything started going (very slowly) downhill.  That was about 9 years ago.

You know your body, you KNOW if what is wrong with you is not the way your body behaves.

Just pay attention to what is happening and if you are not happy with what your doctors are doing and you are not feeling better, keep trying to find an answer.

Keep us posted.  Good luck to you.

Wanna

[smittygirl]

LOL, I can very much relate to the "over doing it" when I'm having a good day.  I think sometimes, hey I must be all better!   May I ask what drug you are taking?  My rheumy is not very generous with the RX pad!   He just gave me a RX for Lyrica for pain which I have not filled yet.    My GP gives me Valium to use as a muscle relaxer at night for sleeping, I use it when I really need it.    I work a lot of hours and until I can convince my beagle to get a job I have no choice!   So fatigue is something I could really use help with, especially on the weekends when I need to get things done and all I want to do is lay on the couch and snooze!    And thank you for your kind words as well.


Sue

[julia111]

Sue,

Thank you for your kind words.  

I am finding that I tend to over do it a bit with my "new" energy - so I am learning I really have to pace myself  ----  or the numbness, pain and fatigue worseness and I am useless by the end of the day.  

I've always believed  "everything in moderation" - so that is how I approach my day.

I hope you continue to be as active  "as you can be!"

Thanks,  Julia

[smittygirl]

Right back at ya Tam!      Hope you're day was good to you!  


HUGE HUGS!!!!


QA      IB     lol......

[wingnut19]

Sue:

{{{{{{LOTS AND LOTS OF CYBER HUGS!!}}}}}


:)

Tam

[smittygirl]

Good for you Julia, continued good luck with it.  Like you I tried every "natural cure" there is for my AS and ReA, but nothing worked.  I was a triathlete/marathon runner before I got sick, so although I will probably never be able to do those things again, I will do whatever I have to to be as active as my body will allow me to be.   Best of everything to you!


Sue

[julia111]

I am un dx'd, but FATIGUE is probably my #1 problem.  

I am trying one of the anti-fatigue drugs.  I have always been very active and into nutrition, looking for the "natural" cure - so this is new for me.

So far it has worked wonders and has given me my life back.  I find it really "smooth" as it is described in the literature and I don't feel any side effects.  Good luck!

[smittygirl]

I feel compelled to respond to a comment about Oxycodone being a "draw for these addicts".   I am in no way judging anyone here but I think we all need to remember that addiction of any kind be it drugs, food, gambling, alcohol etc, are diseases.  For people who suffer from chronic pain these drugs can allow them to function better and improve their quality of life, for some unfortunately they cause addiction because that is the way their bodies are wired.  We are all in pain and I think we all need to respect the different ways we all deal with it.   God Bless...

[Heartshome]

Well, I'm in the same boat you are and I've been here for eight years. I certainly hope that you get answers more quickly than I have.

My doctor also thinks that I have a very slow to delvelop MS, but all my tests come out okay. I do have some CNS issues, but for now it's "wait and see". Very disturbing as you mentioned. You just want to know what's going on.

I also sympathize with your remarks about your family. There is a lot of denial going on in my life too. But, all you can do is try to handle things as they come up as best you can. I hope that you only have a virus and that you feel better soon!

[wingnut19]

LOL....I was just saying to my Mom this morning, that it would be nice if when I went to the MS Clinic in a few weeks, they said , "This is a virus. Here take this pill, and you'll be back to normal in no time."

Yeah, right!   One can only hope, right????

Tammy

[happyvalley]

Thanks for your reply. I too have had to slow down--I am lucky enough to work from home--so that my kids can climb on me and I can make peanut butter sandwiches while I'm answering emails, etc--but I cut my responsibilities in half this spring. . .I know it is smart and wise and for the best--but there's some pride involved. . . .I liked being the mom that could do it all. . .

For now I'm going to just wait and see--if these symptoms go away. I'm glad that my dr is so proactive about getting me a dx. I felt pressured at first like she was so sure that it was MS and I didn't want it to be. She still thinks it could be--which is good and bad. if it is MS, I'm lucky to have a dr that will not give up until she can dx me--and if it's not--maybe we just need to let it go and be an "unsolved mystery." I hate thinking about MS every day. I would much rather believe that this was a weird virus or something. . .

ANYWAY. . .I'm so thankful that this forum exists. It has helped me so much--

[wingnut19]

Hi

I'm sorry that I missed your post yesterday, I really don't know how I did that, but I was having severe brain fog....

I just wanted to say that I totally understand your need to know what is going on in your body/brain and it's extremely frustrating to NOT get the answers...LimboLand is a horrible place to be....
Also, something else in your last post is so true for me, as well...(And probably most of us here)--and that is the "used to be so healthy" thing.
That has to be the hardest thing to deal with because we go from such independant, energetic, multi-tasking women to this!  It's horrible!
I lost my job because of this in January, and that feeling will be with me forever. It wasn't because my employers weren't understanding or accomadating, it was because my job was a very fast-paced one where I had to make quick decisions, do 20 things at once, and I just couldn't do it anymore....
Some days I have trouble remembering my own name or what I did 3 minutes ago! LOL
OK--Now, I'm rambling....Sorry
The bottom line is that I just wanted to let you know that you're not alone and we will all get through this together!
Take care,
Tammy

[happyvalley]

Thanks Rena. I think you're right. I need to give myself a little credit. I try to do what's best for my body. I would never choose to use a medication if I knew I didn't need it--for the same reason that I eat healthy, don't use recreational drugs, etc.

As I read others' posts I realize that maybe I do have a pretty good dr. She feels pretty strongly that this is either MS or a "pre-MS" type flair. Since my tests aren't confirming it she wants to check with me every few months. She's surely not writing me off or calling me crazy. My MRI was ordered my my GP with no contrast. If my symptoms don't improve I guess the neuro will order one with contrast--as soon as Blue Cross feels that it's reasonable to repeat  :)

I appreciate your support and really feel for you. I see what yoiu mean that it's grea ton one hand to not have the MS dx--but it is unsettling to say the least to have a specialist say "I don't know what's wrong with you but something is. ." I couldn't have imagined myself in this boat a few months ago. I haven't seen a dr besides my ob in years. . I've always been healthy. And when I talk to friends or family, even my husband--I don't feel like anyone really "gets" what this feels like. I think some think I'm exaggerating, or wanting something to be wrong with me. My husband, poor thing, tries to minimize it all (denial). I appreciate you and this forum being around. I will stay tuned in.

thanks!

[Rena705]

Hi honey and welcome to Limboland for better or for worse I suppose eh?  6 of one, 1/2 dozen of the other as they say...it's good that you haven't been diagnosed with MS and yet what the heck is it that's causing me all these problems?

To be honest, I haven't tried the anti-fatigue drugs, just dealt with it as it came and it really hasn't been that much of a problem for me.  I don't believe that the doctor would have prescribed them to you without the proper instructions on how to use them and if you follow his instructions I doubt that there will be a problems with addiction.  

I just recently had a try at Oxycodone and I just don't see what the draw is for these addicts myself...I hated them and they didn't help much to boot!  

You are the one that knows if you REALLY need an anti-fatigue medication so you are the one that has to take responsibility for the accordingly.  If you truely need them the chances are you won't become addicted.  Your doctor has stated that you are to see her in 2 months as well so she should keep close track of how the meds are affecting you and will not give you any more should she suspect the slightest sign of addiction.

If treating symptoms without knowing the cause was not a good idea, I would have been in a nuthouse in a straight jacket by now...I am being treated for a myriad of symptoms and no one has come up with a reason for them yet.  Maybe that is why the symptoms have not been alleviated much?  I don't know honey...

It would be nice to have you stick around though and keep us up to date as to your progress...don't forget that the bumps in your journey can be educational for others and you may be able to help someone else and  you might find clues as to what your symptoms mean as well along the line.

Lots of Hugs,

Rena