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Old 11-03-2008, 03:25 PM #1
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Hi Gals!

Thank you for your welcomes, advice, and listening to me whine. I am trying to find things to do to keep myself preoccupied so I don't focus on the MRI but then I become distracted. I have ADHD and Bipolar Disorder, which doesn't help at all. My mind does not focus very well. Oh well, I will do my best at trying to forget about it! One of you mentioned that I have no control over things. I need to come to grips with that reality. I also need to do the same with how everyone around me is towards the symptoms I have- I can't control how they react towards my problems though I wish I could.

Thank you again for your kindness. It is so appreciated. You all made my day a lot better.

Coffeegirl
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Old 11-03-2008, 05:22 PM #2
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Hello Coffee Girl, welcome to NT. Getting a copy of the report is a good idea, and Kittys right lol dont fret over what might or could be wont help and will not change what is. Kitty is also right about the venting, we tend to be a fun group of supportive people here, it helps to get it out of ones system every once in a while.

Might I also add keeping a journal. dates symptoms reactions to say walking 5 miles ect.... and a good place to write down questions you would like to ask the doc

Again welcome to NT CG
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Old 11-03-2008, 06:29 PM #3
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Welcome Coffeegirl. Girl after my own heart. Love the coffee! Mmm!

I couldn't help but responding with more than the typical 'welcome' when I saw all the talk of migraines.... do you know how long I walked around in pain dismissing my symptoms as migraine? I honestly thought they were! Until things got worse...

eye twitching (the neurologist told me this was due to anxiety)
numbness/tingling-fingers/hand/arm/feet/face
burning/itchy/pins/needle feeling with extreme hot/cold
headaches- which ended up being migraines
pain-face/inner ear/jaw/hand
losing ability to write, poor penmenship
fatigue in middle of day for no apparent reason

Ok, I took your list, and all of the above mentioned I suffer with, and more! I had 2 'hallmark' MS symptoms (L'Hermittes and MS Hug, or girdle banding) that my neuro was able to mark as my 2 isolated neurological symptoms isolated from other cause. My MRI and spinal both came back as positives for MS, however my case of MS is almost 100% sensory (no motor/cognitive problems... at least not to a degree that I've noticed or been affected as such).

Without the hallmark symptoms mentioned, I got the same type of brush off from my first neuro. Once the MRI came in, they took it seriously. I hope you find out it's not MS, however if it does end up being MS.. I do hope you find a neuro that you can trust and knows what they're doing
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Old 11-05-2008, 08:13 AM #4
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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!
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Old 11-05-2008, 12:44 PM #5
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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!

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Old 11-05-2008, 05:57 PM #6
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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!
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Old 11-06-2008, 12:23 PM #7
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Quote:
Originally Posted by Debbie D View Post
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
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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Old 11-07-2008, 05:09 PM #8
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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
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