Limbo-Land
 

In limbo-land not sure what is going on. I've had strange symptoms since 2005 and I finally found an MD that referred me to a neurologist. Had the appointment with the neurologist. Definitely have migraines. I have an MRI scheduled for Wednesday. I'm scared that it will come back either way, clear- meaning that I'm absolutely nuts and must imagine all of the symptoms that I have (I'll list below) or relieved, that I won't feel crazy anymore.

Since 2005 I've had the following symptoms:

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-especially after showering
headaches- which ended up being migraines
tremor-in the hand
pain-face/inner ear/jaw/hand
losing ability to write, poor penmenship, unable to hold things with hand, type at times, button clothes, hold steering wheel
weakness in limbs
fatigue in middle of day for no apparent reason

I absolutely feel even worse since the appointment and feel that the neurologist thinks it is just carpel tunnel of the rt. hand. Had an EMG ran in September that came back clear. I've had carpel tunnel before and it felt completely different than this- nothing like what my hand/fingers feel now, which gives me a funny feeling about what the MRI results will be and doctors assumption of the carpel tunnel. He said that he wanted to rule out MS with the MRI along with other things but down played the MRI, making it the very last thing he talked about so we really couldn't ask any further questions. So, I feel very vulnerable right now and scared. I know you all understand what this feels like becasue you've been there before. What if I do have MS but the MRI comes back clear and I still have the symptoms? Will they think I'm absolutely crazy? What if it comes back clear and the symptoms continue and get worse? Will the neurologist just ignore me like all of the other doctors have over the last 3 1/2 years?

The neurologist is a very nice guy and I feel comfortable around him, unlike with the other doctors that I've had who were MD's that dismissed all of the symptoms when I would go in about them- and they would act like I was just a nut. I have Bipolar and they would literally- treat me like I was a crazy person just making stuff up and ignore why I was at the doctors office. It was awful. I've been through so much psychological turmoil with doctors due to the mental stigma that it isn't even funny. I just don't need any more of it with the results of the MRI from the medical field, family or friends. I even feel if the MRI comes back clear my DH will dismiss my symptoms and treat me like I'm crazy. He already dismisses them the way it is. I feel very lonely right now like no one cares.

Sorry about the pity party. I needed to vent and cry some. I've done a lot of crying lately. I just want to feel validated that I'm not going bananas.

Coffeegirl

Hello & Welcome,
I think you might know a lot more after the mri results come.
- you can usually request a copy of the report be sent to you if you'd like to see what it says before seeing the dr again. It could help you think of specific questions you might want to ask at the next appt.

since you mention carpal tunnel...and that you had it before - I'll just mention that there are other repetitive strain injuries that could cause some of the symptoms you mention.
Does your neck, shoulders or upper back feel tight and achy?
One is thoracic outlet syndrome {TOS} we have a forum for that if you'd like to read a bit about it.
Post # 1 in the useful sticky thread will give you many links with info-
http://neurotalk.psychcentral.com/thread84.html

Hi coffeegirl and welcome to NeuroTalk! I totally understand your anxious feelings. I had to have an MRI before I was given my dx of MS and the waiting is not easy. But...it did help to know what was wrong.

I know this is easier said than done but try not to worry too much about what the MRI will uncover. Worrying over it will not change the outcome but just make you more anxious in the meantime. Your list of sx was very familiar to me...I've had them all except for the migraines.

Please don't apologize for venting or even having a pity party....we have lots of those around here! :o At least we all understand what the other is going through and can relate. It's so hard trying to talk to people who just don't "get it".

Please keep us informed on the outcome of your MRI and what the Neuro has to say about it. And feel free to ask any questions you have. Someone here will most likely be able to answer you. Glad you decided to join us here! :hug:


http://i283.photobucket.com/albums/k.../welcome-3.jpg

No words of wisdom, I just wanted to say welcome.

Hello coffeegirl and welcome to NeuroTalk. Sorry about all the problems you've been having, but hopefully, your MRI will give the Dr's some answers. The road to a definitive DX can be short for some and extremely long and stressful for others.

take care and let us know how the MRI goes. Glad you found us.

http://dl2.glitter-graphics.net/pub/...a9arprodj0.gif

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. :rolleyes: 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

Hello Coffee Girl, welcome to NT. Getting a copy of the report is a good idea, and Kittys right:Doh: 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

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? :rolleyes: 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 :)

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?!':eek: 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!:hug:

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 :rolleyes:

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. :rolleyes:

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.

:p

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.

:hug:

Debbie- The migraines that I have usually put me on the couch for the day, and make me a useless person. I become very tired, the pain eases in slowly at first, which is when I know it is coming on, then-boom, it happens all at once, the pain is intense and it is very unbearable. Sometimes I wake up with intense pain and it is so bad I'm not able to get out of bed. The pain location for me is from the top of my head to the forehead down to the temples and it throbs constantly. The neuro put me on a migraine medication but I cant' remember the name of it. It starts with an 'A' and if I take it when the migraine begins it basically stops the migraine all togetehr. I also take 150 mgs of Topamax too for migraines/bpd. I'm sorry that your migraines are bothersome. They can be overwhelming at times when they happen and sometimes just more than imaginable due to the pain. Do you get sick with your migraines? My sister gets nauseated with her migraines.

Brainbegone-Thank you for your comforting words and sharing your story. It sounds like you have been throgh a lot. I'm sorry that you have been through so much. It appears many have been through a lot of ups/downs to get some kind of a dx here or for another form of dx. Frustrating.

you mad some great points about how to look at things in life. Thank you for giving a different perspective with the smallest things in life- that we all take forgranted. Yesterday I was sitting in my kitchen and noticed a squirrel on our deck. Normally I wouldn't think anything of it but I noticed how pretty the animal was and how much I'd love to share that beauty with my family- so I grabbed the camera and snapped some pictures of the squirrel before it ran off. Amazingly, that little incident was theh highlight of my day!! :) Silly, yes, but it made me appreciate the beauty in nature and life. So, I understand what you are talking about.

Thank you all for your encouragement.

Coffeegirl

Migraines and 24/7 headaches was why I started all this testing in the 1st place. I've tried about a dozen meds for that all told. I am on topamax, with Relpax for break through. I did a migraine study with the area authority on the subject, (got paid $25 lol) and did the whole food thing - gave up all the known food triggers, eliminated chemicles to see if there were sensitivities there, too.

Turned out I am weather sensitive with a couple of foods as secondary triggers (wine mostly).

Also they checked my blood pressure - which is low like the rest of my family - and other vascular stuff like Factor II, Brain MRA (to check vascular system there) and got me off BC pills to lower my stroke risk.

I started taking magnesium supplements which are supposed to support heart and vascular health and my daily headaches were greatly reduced. I take fish oil too. Between the supplements and topamax, I'm down from about 3 migraines a week to about one per month which is awesome.

I'm not saying what I do will work for anyone else, I'm just saying sometimes there is more to treating them than just what your doc knows or does for you. There are really great migraine sites now, and the info is worth checking out. I would not have been this successful in treating my migraines without knowing what to ask my docs to do for me or what to do for myself.

I wish all you migraine sufferers the best of luck with this. H/a is the pits!

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

Wow. What an awesome post! Magnesium I have in my cupboard actually, and I was told to take this last year as a preventative. I will again, try it that is, provided there are no serious side effects of it. Is magnesium completely ok to go ahead with? I've heard mixed reactions, but you get to a point where 1 doctor says yes, 1 says no, and then it's 50/50 and it's basically your choice as the patient. :rolleyes:

I'm definitely weather sensitive, and I'm not sure if I have food triggers... I already do the fish oil.

Sorry not intending to hijack the thread! I just wanted to highlight the magnesium subject with headaches. That's pretty awesome to hear from someone who had good results :)

All I can say about mag is the only side effect was some looser stool. (sorry TMI lol) But that was not really a problem as some meds I was on made me kinda constipated, so I needed the help.

If it is a prob for you, try taking the mag every other day. I do not believe it builds up where it can hurt you, I'm sure I read excess is released through urine.

My PCP is well-read on supps and fully supports my use of the ones I take - a lot of docs just do not research them, they only advise you to use meds.

My doc uses supps and green tea himself (he's a cardiologist ) - he is approx 80 yrs old and still working, healthy, getting around fine, so I listen to what he says.

;)