Going nutty in limbo!!

[wendya432]

I have to say, limbo land is awful!!! I'm going nutty waiting. I do not do well having to wait!! lol

I have my next appointment with the neuro this coming Wednesday. I had my MRI of the c-sine and t-spine last week and haven't heard anything. Neuro had said that clinically he thought I had MS, but my brain MRI was clean. So I'm anxious to see what these MRIs show. If they are clean too I think I may go even nuttier!! lol

Meanwhile, I'm having more issues with spasticity. My legs are driving my crazy. My right side is worse, and my right hand is giving me issues. I'm having to use a big fat pen to write. I had to fill out a bunch of paperwork at my son's Dr appt yesterday and I had a hard time with just the regular pen I was using.

I feel like I have fire ants biting me at night and it's making it so hard to sleep, when I have a hard time sleeping at night anyway. But now I'm having a hard time staying awake during the day. I just can't win with these sleep issues.

And everyone wants to know what is wrong, what the Drs say. Well, I don't know yet!!! I don't know when I will know.

I just had to vent a little. I just wish I could find out what is going on. I think I may get a second opinion regardless what the neuro says next week. He had said I don't have TN because I don't have a tic with it, even though everything I've read about atypical TN fits with what I have going on. And he said since my MRI was fine that it definitely wasn't MS, but he had no other idea what it could be since all my bloodwork was fine. But, he did order the other MRIs, so at least there is that. But it doesn't really make me feel very confident that he knows what is going on.

Thanks for listening. I'm just getting very discouraged and a bit depressed. My mind wants me to do things that I used to be able to do, and my body just won't cooperate.

[Cira]

You sound a lot like how I felt just a short time ago. I also don't wait well...I don't know if anyone does, really, when it comes to stuff like this, but I really don't wait well. So, I feel your pain. Limbo is hard.

Keep hanging in there, and don't be afraid to get that second opinion if you feel you need to. At one point, I was so frustrated with this whole process that I was looking into seeing someone else, but in the end, my neuro came through for me. Hopefully yours will, too, but if not - get that second opinion. Also, don't be afraid to ask questions of your current neuro. I held back in the beginning, when he initially only ordered a brain MRI, because I was afraid to damage my relationship with him by questioning it...Turns out, I should've questioned it, because he really did mean to order the c-spine as well.

I hope you get some answers from the MRI & that you don't have to spend too much more time in limbo. I know it is frustrating. But hang in there, keep advocating for yourself & have faith that an answer will come. I'll be thinking of you.

[puglover]

Hang in There!

Just want to say that being in limbo stinks and I just don't understand it. I was in limbo for years and finally got a diagnoses when I least expected it. I know how you feel and how frustrating it can be. I actually had given up trying to find a dx. Then one day I got very dizzy went to the er and saw the nuero on call. That is when I was dx. The best advice that I can give is keep fighting for a diagnoses. you know your body best. If you dont get any satisfaction with the doctor you are seeing go see another or go to the ER when you have new symptons because sometime it takes another doctor to figure out what is going on. Don't give up like I did. I just kept going to the same neuro because every time I got optic neuritis he did treat it with steroids but would never dx me with ms. The sooner you get on the meds the less damage is done. I would also be more insistent with your doctor about getting a dx. Good luck and keep your head up.

[unsureofanything]

yes limbo sucks

Limbo sucks and I can relate to that. I remember when I had my MRI and saw dawson fingers and basically a damning radiologist report. It all matched, he was looking for it worried about (not so much to my face though, probably so as not to stress me which is a good thing). Even said oh those lesions could be normal but we'll do a VEP and that will probably show up nothing, odds are no neurological disorder at all.

So months with the MRI thinking the ship has sunk, then in one sentence my worst fears cleared. Several months of oh you know what the hell is this crap then and thank cuss it's not MS.

Yesterday I was diagnosed and it's hit us like a ton of bricks.

Things can go either way with diagnosis and symptoms even. But I really did need that mental break between neuro appts where I thought it wasn't MS (and was told that). I had a couple of months of peace and was in finally going into remission from the relapse that started the process....I felt renewed by that, and needed it.

You might not have MS and I hope you don't. I also know how hard limbo land is and why you're stressing about this issue, I have so been there. But I'd give just about anything right now for thinking I don't have this condition.

Thus, if at all possible, enjoy limbo land while you can. Don't get your hopes up, because maybe it is MS. But, do your health care work and then relax and forget about it (if you can). Enjoy that possibility while it lasts.

[How bizzare]

Unable to except

Was Dxd Oct 2011 and to this day I'm having such a hard time grasping that my body cannot do what it was used to doing. Cant stand that I cannot walk well or far, or the mushy feeling in my head. My son is in complete denial that his mom has an illness, which doesnt help. I thank God for MSWorld because now I have a place where my people are and know I'm not alone.