Calling all limbolanders-limbo check in 1/4/2011

[minivanmama]

Good morning limbo island! It's time to limbo! The sun is shining and the water is great. Grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how you are doing. The island is waiting.

How are you doing/feeling this week? I hope everyone had a good christmas and new years. I hope everyone is feeling better.

Are there any doctor apts this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Don't forget that if you need to scream the middle of the island is the place to go. Remember that you never scream alone.

In island news - Happy new year.

If you are undiagnosed then this is the place for you. Come and tell us your story. The island is waiting.


The morning went well. I sent my DH and kids back to school and work. They have been home for 2 weeks. It has been a good brake. I can't wait till we get another long break.

I am still getting migraines. I hope they go away soon if not i will have to go see my GP. I am a little sick this morning but not to bad. I hope it will say this way today and not make me to sick.

Well i am off to rest. I will check in later. ((((hugs)))) to everyone.

[jsoxfan618]

Hi there Minnivanmamma and everyone else.
I hope you all had a nice holiday time and a godo start to the New Year. I can sympathize with the migraines. I get them frequently as well. My kids went back to school this week too. As much as I enjoy having them around and doing things with them it is exhausting. I look forward to being able to take a nap if I need and that doesn't happen when they are home.

Last week was up and down for me. I enjoyed the time off from work and getting to spend quality family time with my wife and kids. It was nice to see our families as well. We don't get to see our brothers, sisters, nieces and nephews very often because they live far away.

Physically things are still tough. In addition to the fatigue and usual MS like symptoms, my IBD has been rearing its ugly head this past month or so. The strange thing is that the symptoms are different and I haven't been able to correlate any particular cause. No stomach cramps. Just having to get up and go. Quick! Its been rough. Interfering with my daily life. Basically I can't leave the house when its bad. Can't go to the gym. I've had to call out of work as well. I've tried to figure out whats causing it? Food? Stress?

This week has become another week of frustrating doctor's appointments. The IBD prompted me to call the primary then on to see the GI specialist this morning. (coincidentally it was my previously sched 6 mth appointment)The GI doc recommended some more lab work and another Colonoscopy if things don't improve within the next week. What a way to start the new year?!!

I also saw the Rhumatologist yesterday. She (as I suspected) did not think my symptoms were related to fibromyalga or any other rhumatolgy disease. After the exam she told me that the good thing is that I don't cancer or some sort of catastrophic disease. She recommend that I continue being followed by the MS Clinic as she thinks it is more neurological. I wanted to say DUH!!!! And that still doesn't explain my symptoms.

On a positive note. I'm finally getting my C-PAP this week. The doc's office and I have been going back and forth with the insurance co over which medical equipment supplier they'll approve. I can't wait!!

I hope everyone has a nice week.

[stalo]

I guess I am in limbo land too...

Hello, everyone:
In Oct, out of the blue, I had numbness & tingling on the rt side of my body...no other symptoms that day to send me to the ER or anything, but definitely weird. Quickly turned into numbness, tingling, pins & needles, itching & "zingers" all over my body. I have had periods of vertigo & cognitive delay, as well as losing my balance in the past 6 months or so. I went through some headaches this summer as well, that I thought were hormonal...I am 49yo woman.

Anyway, had a brain MRI in Nov that showed more than 9 lesions. Other tests ruled out lyme & B12 deficiency, as well as thyroid. I have not had migraines in the past & do not have hypertension. Pretty healthy, except for a knee replacement. So, neuro here said probable MS. Had spinal MRI & tap which came back clear for both.

Went to see an neuro at MS clinic last week & he said my lesions do not look like MS. (btw...my symptoms increased over this timeframe...adding twitching in muscles all over my body...I am on gabapentin) He wants to do a transesophogeal echocardiogram to check for a hole in my heart that may have caused strokes which caused my lesions.

I know he is the expert, but wouldn't my symptoms have decreased when the stroke was over, rather than increased? He seemed to poo-poo my symptoms to a certain degree. Anyway, I have the heart test on Friday & then we'll see from there, I guess.

Thanks for listening!

[Chelenae]

Happy 2011 to all!!

I read thru the posts and noticed the migraine and IBS problems of others. I've been struggling with a few migraines and alot of IBS drama. Don't know what I specifically ate - or maybe it was just the variety of rich foods that are so abundant during the holidays?

Good for you getting your C-Pap. I've had mine about a year and a half and it's the best sleep I've had in about 10 years!

Still waiting for my MRI and EMG appts. in May. Big Sigh...
I'm to the point where I don't care what they diagnose as long as I get some answers. OK, that's a lie. I do care what they diagnose lol. I really want something that comes with a magic cure.

Well, have a good week all!

Hugs and Prayers,
Chele

[salamandertom]

Hello. I saw the specialist last week. He told me that b/c I have a history of chronic migraines it is hard to say about the lesions in my brain as they are consistant with both MS and migraine. If I had no history of migraine I would most likely already be diagnosised. I will have a LP next wednesday. If it is positive I will be diagnosised. If not, then I will stay in Limbo land until I am diagnosised with MS. I will need yearly MRIs if the spinal is negative.

[jumpinjiminy]

Well, it sounds like we're almost all having a rough time of things lately. Maybe it's the stress of the holidays? Every year I've had this tendency to start stuttering and losing words around the holidays and I always attributed it to stress. It's been going on for almost 20 years. Maybe it was, maybe it's more, who knows at this point.

My neuro still hasn't called me back about the jerking foot and hand nor blurred vision last week. He's also not called back with my spinal tap results which I had done last Thursday. It didn't go well at all and I've had these spells since then when it feels like I'm just going to burst out in tears for no reason. It's getting worse, but part of that is the lack of support from this doctor. I've been on pins and needles hoping this test would show something, and he's had the results but still hasn't called to tell me what they are.

I was just not going to be okay until I knew what was in that report, so this morning, in tears, I drove up to the hospital and got a copy from the records department for myself. It all looks normal. There were some RBCs, but the number was low so it's probably from the procedure itself. No answers yet again. But I'm more upset over the neuro's lack of concern for my well-being than the lack of results from the test.

This is all starting to wear me down, because I don't know what's going to get hit next and when. I think I'm starting to have a big depression coming on, so when I see my GP tomorrow will discuss it with him.

Then on Thursday I see the neuro-eye specialist and will see about getting a neurologist referral from her.

My GP bumped the preds up to 40mg and my vision cleared up quite a bit yesterday, but this morning the left eye was still pretty blurry.

It's good to hear everyone had a nice holiday. We did here too.

[barelracer]

Hello!

Hello everyone! Hope you are all doing as well as you can be...though I do see from the posts that many are still suffering...

I wish doctors would stop beating around the bush and just order the tests necessary to diagnose us....

I still have no answers or help about my mri results...the lesions and lacunar stroke havent been explained to me at all..My pcp wanted a neuro to help me, but the only one I saw said she couldn't...??? so I take my 325 mg aspirin and hope I dont suffer another stroke...ewww...!

I see that I am not the only one waking up each day wondering what new symptom there will be! I had 4 pretty good days that I really didnt feel to bad..but then the other day I went to stand from sitting, and my entire left leg was numb...couldnt feel a thing at all!!! made walking hard..it still worked?? but I couldnt feel it..this only lasted for 20 min., then feeling returned, and OUCH! it hurt!

I was pushing myself those few days...and now my hands..*sigh*..I feel like I am getting jolted by electric in my fingers...I use them anyway..but it is uncomfortable...

But, I see my pcp again the 13th...and will see what he wants to do now, since the rhum and neuro werent any help (which I dont understand, there are plenty of abnormal test results to help figure it all out!)

I hope to be diagnosed soon, and treated, currently just being given a bunch of pain meds..
But alot of people around me (including family) are starting to treat me like I am just being lazy, or faking, and some dont believe I had a stroke!!! ( I refuse to carry the mri results in my purse just to prove it!) So they therefore dont belive my cognitive symptoms..which suck!

*sigh* But even with a diagnosis...they all think MS is "no big deal" and that I am "over re-active"..???? If they only knew....

Anyway, best of luck to everyone!

[minivanmama]

jsoxfan618 - Good to see you. I am glad that you are getting your c-pap. I am glad that you got to spend time with your kids and family.

I am sorry that you are haveing a hard time. I hope you don't have to have a colonoscopy. I hope your IBD will get better. I am glad that you called your doctor.

I am sorry the rheumy just sent back to the neuro. I know that run all to well. I know just how frustrating that game can be. I hope that your neuro will now try to look for some answers.

I hope you get to feeling better soon. I hope you can get some rest. (((((HUGS)))))

Stalo - Welcome to the island. I am sorry that you are getting the run around. I know that must frustrating you,

I hope your test on friday will go well and that the problem is not with your heart. I know that must be stressful.

I hope that you will get to feeling better soon. I would go with the first neuro that wants to help get you some answers.

Let us know how your apt went and what the doctor has to say. Just know that we are here for you anytime. ((((hugs))))


chelenae - Good to see you on the island. I am glad that your c-pap has helped you. That is great.

I hope that you will get your results soon. I know waiting is hard to do. I hope they will give you some answers.

Let us know when you get your results back. ((((hugs))))


salamandertom - Good to see you. I am sorry that you did not get a dx. I know that must have been frustrating for you.

I hope the LP will get you a DX . I hope your LP will go well and that you don't get a headach. When you are feeling better let us know how your LP went.

I hope you get a DX soon. ((((hugs))))


jumpinjiminy - Good to see you. I am glad that you had a good christmas. It does look like we are have a rough time right now.

I am sorry your neuro is not calling you back about your SX and your test results. I know that can be hard to deal with. I would make me mad. I am glad that you did go and pick up a copy.

I am glad that you are going to see your GP i hope he will help you. I am glad that the 40MG pred is helping some.

I hope your neuor-opt apt will go well and that he can give you the name of a good neuro. I also hope that he can tell you what is going on wiht your eyes. I know how frustrating have problems with your eyes can be.

Keep hanging in there. It is hard when you are getting the run around and test are not comeing up with answers. That is hard to deal with. Just know that we are here anytime you need us. Lots of (((((hugs)))))


barelracer - Good to see you. I am glad that you had 4 good days. I am sorry that they did not last longer. I love have good days.

I am sorry that the neuro and theumy did not help you. I don't know why doctors don't help you with your MRI results. I hope your GP will help you and get you on the road to finding answrs.

I know it is frustrating when others around you don't belive you. I am so sorry that they are just thining that you are lazy. I hope that they will stop soon and can understand what is going on.

I am sorry that you are feeling bad again. I hope that your fingers will get to feeling better soon. I know how painful that feeling in your fingers can be.

Keep hanging in there and know that we are here for you. We know how being in limbo can be and we understand and know you are not lazy.

Let us know how your apt with your GP goes. Lots of (((((hugs)))))


Well i am off to bed. Good night limbo island and sweet dreams. Lots of ((((hugs)))) everyone.

[minivanmama]

Just check in. I hope everyone is doing well.

Good night limbo island and sweet dreams. Lots of (((hugs))) everyone.

[sjackson21]

Hello. I am a 23 yr old F. I have been going to the dr for seeral years with random weird symptoms, and always told I was fine. Then I lost my health insurance. I starting making a list of my symptoms and its rather long. I recently was accepted into a free clinic here and went to see the dr. These are my symtoms; on and off agian insomnia, memory loss or forgetfullness, trouble with thinking through problems or deciding, moody, vertigo when on/off elevtor and looking down from height, bad coordination and over/under reaching, tingling fingers, on and off hot spots on legs, upper face pain and eye discomfort, EXTREME fatigue, back pain, and cold toes.

He told me he thinks it might be ms. So he sent me to have an mri and blood work. I have not heard back on the blood work, but was told my mri was normal. I am trying to see a neuro at UVA. Should I continue to think i might have ms or move on? Is the neuro just going to tell me im crazy and send me on my way? I know there is something wrong with me, and i would like to know what it is. Has anyone had a normal mri and been diagnosed with ms?

[sjackson21]

I should add that I have had complicated migraines all my life and there were no lesions on my brain from those either

[minivanmama]

TGIF!!! Good Morning limbo island.

sjackson21 - Welcome to the island. I am sorry that you are feeling bad and trying to get answers. I am glad that you found us.

I am sorry that your MRI did not give you answers. I know that must be frustrating. I hope the bloodwork will give you some answes. I am glad that he did a MRI and the bloodwork.

I hope you can see a neuro at UVA. I would keep on looking for answers. See what the neuro has to say. I hope he does not tell you that you are crazy. Your question about haveing a normal MRI and being diagnosed is a good one. I would post that on the main board.

I have had migraines and there were nothing on my brain MRI either. I don't know why that happens. I hope you get to feeling better soon and can get on the road to getting answers.

Just know that we are here anytime you need us. Keep us posted on what your bloodwork had to say. Let us know how you are feeling. (((((hugs)))))


Have a good day limbo island. I am off to start my day. Lots of (((((hugs))))) everyone.

[stalo]

Had echocardiogram today

Hello, limbolanders:
I had my trans-esophogeal echocardiogram today & the cardiologist told me right away that I do not have a hole in my heart. So, small strokes as a result of a hole are now ruled out. I am waiting for the results of the blood test for a clotting disorder, but I don't think I have one of those either. No one in my family has that.

I have decided not to go back to the neuro at the MS clinic. I thought he dismissed the symptoms that I was feeling...I didn't feel comfortable with him. I am going to stick with my local neuro for now. I have contacted Mayo & they are going to let me know if I qualify for an appt. I trust my local neuro & am not sure if I really need a second opinion right now.

I think I am just going to have to wait to see if more symptoms develop or see if I have more lesions develop when I have my follow up MRI in 6 months. I am not good at waiting, but I am glad to know that we are ruling out all the other stuff that could have caused my lesions.

Thanks for listening!

[jumpinjiminy]

Limbo limbo, don't be a bimbo . . . I dunno, there's a song in there somewhere but I can't find it at the moment!

Hi all. Yes, I'm in a good mood today finally. I got up this morning, turned on some tunes, danced with the bunny and sang to him. He thought I was nutz! That's okay. He will get to know my quirkiness. I think he liked it.

It has been so long since I've felt like my old self, I can't even tell you. But this prednisone really seems to be helping. My interest in the dozen activities I normally involve myself in is slowly starting to return. I haven't seen it for about two years now. There is so much more, but I will try to keep it brief.

The 40mg has not yet cleared up my vision. It's still blurry when I wake up in the morning and later in the day. The neuro-opth was a peach, concerned, thorough, and went the extra mile to gather as much information as she could before deciding on which tests to order and do an exam.

She said I had large optic cups but no signs of glaucoma, that one pupil isn't as reactive to light as the other and that was confirmed by two other tests she did. She doesn't think it's optic neuritis at this point because my color vision hasn't been affected this time, but is holding off for some test results to come back before making an official diagnosis. She thinks I may have had optic neuritis in the past. She ordered a VER which I will be having next week.

For the time being the differential includes migraines, ocular migraines, optic neuritis, lyme's, sarcoidosis and probably a few others she hasn't mentioned. She ordered some blood labs, some will have to wait until I come off the preds.

She completely supported my GPs treatment of this and couldn't understand why the neuro was deciding to trade off possible eye damage now for potentialities that might come along with steroid treatment. Her opinion was to stay on them for another 2 to 3 weeks at this level, get the tests, come back in two weeks for another exam and to go over the results.

Her feeling is there is an underlying autoimmune process going on, and that holding off treatment for a formal diagnosis was not the best plan because the neuro may never find what he's looking for. It's so good to hear a doc express my own sentiments. I think my GP is in the same camp. I'm finding out who is on my side and who needs to go.

When I see her again, I will ask her for a neuro and rheumatology referral locally. She felt the next step after this if it becomes a chronic, relapsing problem will be to find a steroid-sparing agent. But I will need to find a new neuro and/or rheumatologist to prescribe them. So the hunt is on. I had no luck with the first two. And I really don't want to go to Mayo if I can find someone locally.

The neuro called with my spinal tap results which came back essentially normal. There were no oligoclonal bands, which in his opinion made the possible diagnosis of Hashimoto's enceph highly unlikely. He says there is no evidence at all in his opinion of any brain inflammation. There was nothing more, no when to follow up, no where do we go from here, just an apology for taking so long to get the results back in. I think he's a good person overall, but I think he's giving up on me.

Settling down for pizza, wishing I could have an adult beverage to go with it, but I'm on so many meds right now, that probably wouldn't be the best idea I've had this week. At least I'm feeling HUMAN again. What a nice feeling.

[barelracer]

bad day..but many blessings!

Ughh...what a day! I sooo did not sleep(as usual) and didnt want to get up, at all! but had a load of hay being delivered...so had too!
The hay got there early, so I started unloading it with my friend (a triple bypass survivor) and was pushing myself REALLY hard toget it done without letting her help so much...(I worry about her heart!)

While I was pushing...it was like I couldnt feel the pain or fatigue...it was great! my help arrived to unload the last bit of it, and I, still feeling good (or so I thought), went to take care of my horses...

It lasted 15 minutes...*sigh*, then BLAM! I was EXHAUSTED! and hurting...so bad...

Guess I looked crappy cause my friends made me check my temp, and it was 100.2...even out in the freeze...

BUT! I was determined to do something enjoyable....since he was already in, I took my competition buddy, target, to the "indoor", and wanted to ride, against many protests..

Now, a while ago, before I got "sick", I was on a trick training kick for an "edge" when competing at cowboy races...and taught my horses to bow and/or lay down...

some people think it is showboating, or a waste..

But today, I realized just how lucky I am...when good ol target laid down as quiet and nice as you please, just from a tap of my foot on his front hoof...and I got on easily...( I dont think I would have had the strentgh to pull myself up otherwise). I only rode for 10 minutes, and crashed in my easy chair with heating pads the rest of the day.. but it was worth it!

With everything going with my son's health, and mine, lately I have been depressed...but today I got a wake up call that we are actually very blessed...