Had Brain-stem auditory evoked response test and MRI's today.

[MtnHigh]

Well It wasn't the day I was hoping for.. or maybe I am just crazy!!

My Brain-stem auditory evoked response. Test was at 9am this morning. That was a cake walk, other than waiting for them to fix the thing because it wasn't working right. Once that was all done, the test was fine. 4 leads put on you. One on each ear, one on the top of the head and one on the forehead. Put on headphones and listen to the sounds and that's it.

The MRI's where fine, they didn't take as long as some had said. I don't know if that's a good or bad thing. A hour and a half and I was done. Guess the spinal one didn't have dye with it.

Well then I got the shock of my life! I was told that when I was getting read to leave the MRI place, that it would be a few days before my Nero got the report. Well he called me this evening before 5pm!!!!

The MRI's he said were CLEAR! No tumors or MS build up. He said that the Brain-stem auditory evoked response test had not been printed out so he didn't know about that yet.

So I still have the EEG on the 22nd and then a spinal Tap to do....

Not that I was hoping for MS, but I was so looking for answers, and I was hoping see that the Nero did the MRI's so soon and didn't do this and that and everything else but them for a year. That I wouldn't be in Limbo, that he would call and say well this is what is wrong, or yes you have MS.

I was ready for the MS, I wasn't ready for the no MS on the MRI's.... I know it might sound wired for me to think about it that way, but that's how I was reading myself for all of this.

So I guess now I pray that the EEG and the spinal tap and Brain-stem auditory evoked response test show up something!!! I can't get going on how I am going without knowing what is going on with my body.

I am soooooooo upset!!! Part of me thinks I am crazy for being upset, but I soooooooo need to know what is going on. I have 4 kids two little 7 and 4. I can't be down all the time unable to care for them or do things with them!!!

I just want to scream and yell!!!!

Now it's a wait game for the Nero to get back to me about the Brain-stem auditory evoked response test, and wait for the EEG and Spinal Tap. Praying that they show SOMETHING!!!

[22cyclist]

Mtn High:
I am sorry you are feeling this way. I know how frustrating limbo can be. You have several other test coming up, perhaps they will show something. If they don't, it is still not the end of the line, just the beginning of something new.

Please keep being your own advocate. You are the only one who knows something is definitely wrong. You will find an answer soon enough...maybe not as fast as you would like, but you will find one.

I'm sorry you are frustrated and hear and understand everything you are saying.

We are all here for you no matter what happens.

Keep at it.

[Cat Mom]

MtnHigh, I do hope that the remainder of your tests give you some kind of answer so treatment can begin and you can take control of your health = being a mommy to your 4 kiddies. Keep advocating your health, only you know how poorly you're feeling.
Jen

[MtnHigh]

still so upset!

Well my Nero called yesterday to tell me that the spinal MRI was clear other than a cyst in my pelvis that is small and wouldn't be causing any pain or trouble.

The Brain Evoke test thing he still hasn't said anything about, and I still have the EEG on the 22nd of this month, and then I will also ask for the Spinal Tap too.

I was so ready for yes it's MS, that I just thought that I was going to be different I guess and maybe not be in Limbo!! I just thought for sure that he was going to see MS in the brain and the Brain Stem....

I am NOT ok with the answer of well we don't know what is going on, so we are going to have to wait for 6 months or a year!! I can't wait that long to know what is going on.

I didn't sleep good last night because I was in so much pain. I just hurt all over and med's were not helping!!! I am so tried today and my lil ones want to play lego's, but I am soooo tried I just want to sleep!!! But I can't, and the 4 and 7 year old boys are fighting, they are trying to play nice, but they just not doing good today at playing with each other.

All day yesterday I had the feeling like there was a spider on my foot or a bug.. there was nothing there, but I keep looking down as I had flip floop type shoes on due to the heat. I must have looked a 10000000 times and keep brushing that area off on my foot!! It's done now, but my calf on that same leg hurts sooo much!!

All I want to do is get in bed and cry and scream and yell and throw stuff to break. I love going to the recycle place and throwing the glass stuff in the huge bin. It really does help, well unless my arms hurt and are not working well then I can't even do that.

I just want answers, I know we all want answers, but I so can't be in limbo. I can't let this eat at me more and become worse, and then the doctors go OH YEA there it is you have MS!!! When I could have been on a treatment already!!

I have been tested for everything under the sun! Everything has come back fine, so all it could be is MS, and I am sad that I have to wait until something shows up, or that it's this or that!!

I want to be back to how I was, I want to be able to run, and be out in the pool with the kids when it's hot. I want to be able to do the laundry and go camping, and cook and stay up late at night with the hubby watching movies. I want the pain to be gone!!

Ok that's the big thing!!! THE PAIN!!!! I have a VERY High pain level I mean I did 16 hours of labor with med's to keep me in labor that makes everything hurt worse, with NO pain med's. The pain was not even a 10 for me until the end, then it was. Most people'10 or at least my familys and friends top 10 pain is like my 6 or maybe 5... BUT this pain that I have now, is like a 7 ALL the time!!!!!! How long can they say well we aren't going to give you any more med's until we know what is going on, so just make sure you are taking the med's you have now for the pain. How long to they think I can handle this pain without lossing it on someone or something or myself!!!???????

A few months back most of the time when I moved my my left arm it hurt like it was trying to break, well now that went away, and yet now it's coming back in my right arm. Typing is even hurtting that right arm the upper part above my elbow. It's just crazy!!

I hate Limbo!!! I hate the waiting and I don't know how to get the point acrossed that I don't have time to just sit back and wait!!!

[mjan]

Oh how I feel so badly for you and ALL you are enduring. I just have a feeling that the EEG and LP will probably not show anything that relates to the kind of symptoms you are having..sorry hon.

BUT.. I wonder about your pain issues. Where exactly is this pain? Not everything neuro is MS. I have lumbar spinal stenosis and it is the worst pain over delivering 3-10 pound babies for sure!! I also was in limboland for sooo many years, with many guesses before DX of benign MS, then that was taken away. Few years later, another group of docs suspected MS, but I was then in denial..rightly so. Gave up on chasing a diagnosis. But FINALLY my MRI showed the dawson finger type MS lesions and I had MANY lesions on multiple MRIs, just not the MSee kind LOL

Is your doc a MS neuro?

Gosh I hate to see you go through all this. But know this, it may not always be this way, whatever IT is..and.. my chiro who only uses a finger to unblock pinched nerves helped a lot!! AND I saw a specialized nutritionist who detoxed me and built up my deficient systems which helped get my balance back and impressed my neuro.

So.. hang in there, remain with us, cuz WE care and WE know what it feels like.

Gentle hugs my dear, Jan

[MtnHigh]

@Jan

Two years ago, I had numbness in my arms, both arms, and the more I moved or used them the more they hurt and burned. We had just moved so I thought I had picked up something wrong and that's what it was. Then it came back 4 month later or so, not really sure of the date. I told my husband this is really kind of wired, and worried me a bit.

Then all that went away, but I had a pain under my right arm, that hurt so bad I did go to the ER, My right arm hurt and was numb. The ER doc thought I might be having Heart Attack so ran a EKG, an ultra-sound under my arm to look at the veins. Everything was fine and he said that I pulled a muscle. He put my arm in a sling and said STOP picking up your kids!! lol

Then a few months down the line, guess it's been almost 11 months or so. I was having really really shard pain right at the base of my head at the top of my neck, it happened if I was standing up, sitting down, walking laying down or whatever. When I got it it felt like someone had put an ice pick through that spot, and I would get soooooo dizzy that I would fall down, or lay down before I fell and I would 99% of the time get a headache within a few seconds of it happening.

When that happened at church on stage, I was told to go to the ER, so I did. Same ER doc that saw me last time, and he did a CT of my head to look for anything odd, and then told me I was having a migraine. My Mom has migraines and I have had my share of them, that I know that it wasn't all from migraines.

Then I stared having pain in my back, up my spine, it felt like my back just the spine area was on fire and tingling and numb. My right side from my shoulder down on my right side went numb and hurt. Sometimes it was just my arms.

I started seeing a doctor. She thought it might be Fibro, but she said all my pain spots where in the wrong spots, and that it wasn't sounding right for her to say that's what I had. But she did put my on Cymbalta, and I am now up to 60mg twice a day. Now it takes the edge off the pain, but doesn't make it go away in full. I also have mood swings and it helps some with that too. Better than being on nothing for the mood swings. Still have them, just not as bad.

When I came in to my reg doc again, I wrote down all the odd stuff that I had going on. I went back as far as 06

06... Thanksgiving time right eye blindness. We were out of state so when I got back went to eye doc and he said he thought it was just from a migraine, because everything looked fine.

I have had trouble sleeping, staying asleep and ALWAYS feel tired even if I have gotten a few good nights of sleep.

dizzyness that I was scared to drive 3 years back. Thought it was stress. Watching my 4 kids, just had the 4th, took on a child to watch for my husbands friend at work. Then started working nights 11pm to 6am watching a friends newborn baby twins so they could get sleep 4 nights a week. Then when she had to go back to work, started watching them at my house. So watching 7 kids in all. My 4 and 3 others.

2010 would just get itchy all over for no reason!!! Would have to take a shower and take some med's, It wouldn't really help, but it took the edge off of it, and I could at least do what I needed to do. I sometimes itch at night in my sleep and have given myself bruises and bleed a little from it in my sleep.

Numbness, tingling in arms and right leg and left foot. Trouble remembering things. Like my sister would come and say hey, when your show is over can you come and trim my dogs nails... I would so forget and never do it. Someone can tell me something and by the time I am off the phone I have forgot what they told me. I walk into a room and don't know why. I have wasted milk in the last year, because I put it away in the wrong place. Put peanut butter in the fridge and odd things like that. Can never remember where I have put stuff or where my keys are.

Trouble walking since High school, gotten worse in the last 4 years. My shoes show it, I am always pulling apart the tips of my right foot, because I am always tripping over stuff. So my right shoes the soles are always coming apart at the top.

bladder issues that I have chalked up to having 4 kids

IBS that I have tried to go to gluen free and milk free, it's hit and miss if I will have to run to the bathroom or not after I get.

I have had hearing loss in the last 2 years. Noise bugs me sooo much now.

I have had bad headaches/migraines up until 3 months ago.

I had a 6 weeks time of couldn't hardly walk, arms where numb, soooo super tired. Getting up and going to the bathroom felt like I was running around the block 3 times. I was looking into a service dog, we were looking to have someone come in to help watch the littler kids. Looking into a wheelchair. Super pain! Since that time I have not had headache/migraine and that's really odd

In the last 8 months I have started having tremors in my hands. Nero saw it when I saw him the first time.

I have jerking movements in my legs, arms, back, foot, head and whatnot. Started about 3 months ago

My blood Aunt has MS, we have talked a lot. She hopes it's not MS, but we both think it is. We can't think of anything else that it could be.

I have had a load of blood-work done to rule out everything that they can before the MRI's where done. All came back fine.

So that's why I am soooo upset!! It sounds like MS, not that I want it to be... but I want them to find out what it is so that I can get one with my life and raise my kids!! My youngest boy is 4 1/2, then 7 and 14 and my daughter is 17. I sing at my church and have no had to sit while singing and not holding my mic because I never can hold it the whole time, or I drop it. I had started running and can't do that anymore. I don't ride my bike anymore. I don't hike with my hubby anymore either.

I NEED to know what is going on!!!

-this was typed with the 4 1/2 year old and 7 year old fighting so sorry if I missed lots of typo's or jumped around to much--- lol

[mjan]

OH dear you have been and ARE going through soo much. I am so sorry for all you are enduring.

I will keep you in my thoughts and prayers. Please let us know how you are doing and let us know what the docs are saying too.

Again, my hope is that you will get a name to all this neuro stuff.

Hugs, Jan

[MtnHigh]

8/16/2012 afternoon

Making my lunch a salad I was walking from one fridge to the other one to get dressing, and next thing I knew I was on the floor.

My legs mostly I think as it happened so fast, my left leg went first and that's my strong side!!! My right side is weak and so it couldn't hold me up..

Now what to do?? My arm hurts now, and now elbows

:::sigh:::

Guess I just write it down for the Nero to see when I get back to him on Oct???

Now I am scared

[mjan]

Gosh.. ENOUGH!!!

What I would do is call your doc's RN who triages his calls so this fall is reported. They may want to actually SEE you and check your strength/reflexes.

Hang in there.. your body is trying to say what those dang tests cannot..yet!

Jan

[acaverly]

I am sorry and understand what you are going through. My first MRI did not show anything either. I am having another one next wednesday. Hang in there and I hope you called about the fall.