Welcome Coffeegirl! NeuroTalk is a wonderful place to come and vent but also to have some laughs! I hope you come to enjoy this place as much as I and many others do!

I also am in LimboLand.... as Frank stated it is very important to keep a journal! I was told that and it is very helpful when seeing the Neuro. If you are anything like me when you get in there you forget to ask some important questions. I write every day even if there is no change or I am having a good day.

Best of Luck, and please remember to keep us posted!

All of your posts are so comforting and are helping me get through this strange period. Each of you understand what limbo-land is and what it entails.

Right now I don't know what I fear most hearing a diagnosis or hearing that I don't have anything but that I will have these symptoms for the rest of my life without any cause/'the unknown factor'- and that there is nothing they can do to treat them or what is going to happen. I'm just really strung out thinking about it, and I found out yesterday my DH is very worried too but he is trying to be the stable person of our marriage, because someone has to- and he is right. Our boys need stability right now and I'm definitely not that at the current time- which is bothersome as a mom. The symptoms have taken time away from my sons and spending time with my family over the past few months and that is what upsets me the most. I just want it to stop and fear that it won't be able to or that it will just be 'the unknown' and a mystery, and I will go on living in limbo land forever wondering -'what on earth is wrong with me?!' If that happens, then my therapist and DH will help me work through it but none of our family and friends will understand.

I need to stop analyzing everything and get busy again. Today I have been wise and took an Ativan this morning. If I was smart, I would have taken an Ativan every morning this week to keep me stable and calm, but I didn't think of doing that. Oh well. I'm going to take one right before I have the MRI so I won't freak out when I go into that room. My son had to be sedated when he had his MRI this year due to being scared. There is nothing worse than having your own child require an MRI of their brain. Waiting for those results seemed like weeks (only two days) but it was torture. Children are precious. His brain was fine but he ended up having low growth hormone deficiency and requires growth hormone shots daily for the next few years. He has taken it all in stride. He is also growing now and is gaining to the other kids his own age. So I worry about the outcome of this MRI mostly because of how it could effect my family due to my functioning abilities. I've had difficulties all fall/summer playing baseball/football with my sons and it is so upsetting. I just hope I don't lose that ability. Playing with them means more to me than anything in this world.

I need to stop blabbering. Thank you for listening. I had better get back to focusing on working in this house. Today my hands are functioning some and I'm taking advantage of that- clean, clean, clean!

Coffeegirl

Welcome, Coffeegirl....NT is a great place to visit, chat, and learn from the others...some wonderful people here, who are kind, compassionate, and freakin' fun!!

I must ask, since I am in limbo also...can you describe how your headaches feel? I can't get rid of this headache I've had off and on for about 3 wks, the same time that some of my sxs returned.
Thanks for any info you can share...and again, welcome!

I can tell you what mine feel like, if it's any help.

I don't know if they're actual true 'headaches'. Basically... they sit in my left temple, and they rarely let up. It's awful. They can progress into a burning pain that runs from the top of my scalp on the left, down to my left eye. Sometimes into my cheek as well. Just depends.

Clonazepam has been the only medication I can tolerate that 'breaks' through the burning of these (I take a small amount of Clonazepam). I had terrible side effects so far on other options, such as antidepressants and anticonvulsants that are traditionally used to treat this type of pain.

As of today, I have a bit of burning, in fact, some slight little sharp twinges of 'electrical' pain in my cheeks off and on, but the headache is another matter. It's sitting up there brewing. Right now it's dull pain in the left temple/into the cheek, but I can feel slight burning at the top of my head starting up.

I try to avoid medications (over the counter or otherwise) for as long as possible when I get these headaches, but as you mentioned, these can last for weeks on end, and each day can be different. I also don't truly believe them to be headache or migraine... more MS having it's sensory fun on me

Actually sounds as if your headaches are connected to trigeminal neuralgia...mine are just pressure, as if I'm wearing a bike helmet that's too tight.

Actually, I 110% agree with you. Sadly, my GP flat out refuses to believe that mine are TN. My neuro is also on the side of believing it to be migraine alone.

Sigh.

I know what you mean about the helmet. I get those as well, just very infrequently.. but they're not fun what so ever.

CoffeeGirl,
I was first told I might have ms in Jan '03. I still do not have either a dx or ruled ms completely out - my neuro still thinks it's possible.

And I'm not telling you that to scare you, but so that you know that I get where you are. I was there. I was later dx'd with spinal issues C spine and syringomyelia in the T spine. Neither of those explained half my symptoms.

I was totally freaked for a long time. I cried, I raged, I got depressed. There is nothing wrong with you if you have crazy mixed up emotions, going through all of this, okay? Who wouldn't?

One day I looked at myself and decided I had not cried the first 40 years of my life, and I wasn't gonna spend the next 40 crying either.



I was gonna get up and do what I could today - and it was not as much as I used to be able to do - not 1/10 as much. But I'd do it.

I may have to do it not knowing why it hurts, why my parts don't work, but I am not going to waste my life waiting for that answer - the diagnosis. Thank goodness I did that, moved on. I would still be sitting on the couch waiting. Man would my butt be sore by now.



I still get mad, still cry at times. I still get depressed because I want to go garden for 10 hours like I used to but I can't.

~sigh~

It is what it is, and all things for a reason.

Thing is, I have learned a lot. For every thing I have lost, there are five things I have gained. And that is no joke girlfriend.

I never would have been slow enough to watch a butterfly before. And now, I know them all by name. I cannot work, but I can feed the hummingbirds, and that is priceless.

This is a hard time, I know, we all know. But you are stronger than you realize. You will find you way, the strentgh you use to fight your other battles, you'll fight this one with too. And there will be a time when you'll make peace, before or after the figure out what's wrong with you.


and - believe it or not - you may even forgive the dummies who did not believe you along the way.

HUGSSSSSSSSSSSS
I have been similar sxs...well the tingling, and painful tingling..numbness stuff...balance issues, and some of your others ...sorry and hugsss

hoping you have great luck from your testing....as I have done this limbo for 8+ years....but keep the chin up..and keep asking your dr for ways to alleviate some sxs at least....sometimes neurontin or lyrica can help with the tingling part of that numbness...and to avoid too hot of a shower....and certain things to avoid...I try to exercise like walking or yoga...to not overheat ..as I hate the sxs I get when body overheated...stay strong and good luck,sarah