Calling all limbolanders-limbo check in 3/29/2011

[minivanmama]

Good afternoon 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 this week is better for the island. I know last week was hard for many and i hope they are feeling better this week.

Are there any doctors apt this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Remember that if you need to scream to go to the middle of the island. Remember that you never scream alone.

In island news this week - It has been a hard week for many on the island. I am praying for everyone and i hope that this week we will all be feeling better.

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


Wow! what a week for many. I am sorry that I have not been on the board for 6 days. I,too, have been very sick, but i am on the mend for now.

I have been in bed with bad spasticity and the hug. My legs were numb and so were my arms. The weakness set in on Friday and just sitting up was a major task. I did not go see the doctor or go to the ER. I should have, but just was not wanting to hear that they could not find out what was going on.

Things are better now. I am a little weak and the fatigue is bad and, where the spasticity was bad I am very sore. I am up and moving and back on the island.

I am praying that this week is better for all of us. Everyone grab there hammock and get some rest. Lots of ((((hugs)))) everyone.

[TSprairie]

May I joing this Limbo Land Club??

I have been dealing with left sided numbness, burning, aches since January. I had a spell in the fall that lasted about 3 weeks but did eventually go away. MRI at that time showed 6 lesions "not conforming to a particular diagnosis". I am scheduled for another MRI in the fall.

Recently, my Neuro gave me a 3 day course of oral prednisone to try and give me some relief. No such luck All it gave me was water weight gain and a feeling of being high which will not disappear. Is the Prednisone or the possible MS? Not sure. I just feel extremely foggy and not connected to anything. It is quite a weird sensation!

Neuro ran a bunch of blood work this past visit. Waiting to hear back if anything came up abnormal there.

I'm a Mom of two, married to my hubby (highschool sweetie) for 15 years. I work full time. Love riding my ATV with the family. Riding my Motorcycle. Photography.

[Chelenae]

Am I "officially" in limbo now?

Saw the Neuro yesterday. My emg was normal. All he said about the mri was that there was no brain tumor or evidence of strokes.

He will not diagnose or rule out anything. He also mentioned about 3 times "of course I specialize in Parkinson's".

THEN he told me to call if anything new came up and to come back in a YEAR!!!!

I am so confused, and I don't think I have ever felt so angry since I can't remember!!!

Is this the real pain of limbo I' just now getting a taste of?

Oh god help me.

Hugs and Prayers,
Chele

[Sunflower214]

Get a new neuro!

I was in limbo land for three years and as odd as it sounds, I am happy to no longer be there. I now know that I have MS.

Your Neuro sounds like the 2nd one I went to. My 3rd and current Neuro said that "he (referring to the 2nd neuro) wouldn't know MS if it smacked him in the head". He said he would have diagnosed me after 2 seconds had he seen me 3 years ago!

Anyway, I know how frustrating limbo is. Just know this - you are not crazy, you know your body, and you can find another doctor that will work with you to find the answer (one specializing in or who sees a
lot of MS patients is a good start).

Best of luck to all of you!

[leahchris]

Exhausted and in pain

Hi all.
I have only had one minor flare of my definite, probable and possible MS (depending on who I saw and when) in the past eight years. I am on the verge of another one, and I am afraid it is going to be bad. I am exhausted from doing my everyday things and I hurt all over.

I have an ear infection that doesn't want to go away because of the spasticity in my face and neck. With my last two major exacerbations I developed ear infection from the spasticity and the inability of my ears to drain. Those are the only times as an adult I have ever had ear infections. Has me concerned. I was at the doctor 4 days out of 5 last week, and should go again and get muscle relaxers, but I am tired and tired of the clinic.

I find out tomorrow when my next set of MRIs are scheduled and I assume my doctor's assistant will eventually send the orders for the blood test my neuro wants me to have.

On the bright side, my grandson who is five (and lives with me) is learning to read really fast and keeps me smiling. I have a great husband of almost 27 years and three terrific kids.

[minivanmama]

TSparirie - Welcome to the island. I am sorry that you are looking for answers. I hope in the fall that your MRI will give you some answers.

I hope you will get to feeling better. It could be the pred or the possiable ms. I don't know with one it could be. I hope that feeling will go away soon.

I hope the blood work will help with some answers and that you hear from your neuro soon. I am glad that you found us. Know that you can come here anytime you need to.

Enjoy your family and lots of ((((hugs))))


chelenae - Good to see you. I am so sorry that your neuro is not helping you. I can see why you are mad. I would me.

I would find a new neuro if you can. I am sorry that you are looking for answers and not getting any. Limbo is hard and not a fun place to be. I am glad that you found us.

I am glad that your EMG is normal. That is good news. I am glad that your mri did not show anyting really bad also. I hope you get to feeling better soon and get a good neuro soon.

Lots of ((((hugs))))


Sunflower214 - Glad that you have answers. Thanks for comeing by and letting us know that we should keep on going and know that we are not crazy.

Lots of ((((hugs))))


leahchris - Good to see you. Enjoy your grandson and husband. I am glad that they keep you smileing.

I hope your ears will get to feeling better. I hope you don't have a flair comeing on. I know that feeling. I hope you will get to feeling better soon.

I hope you don't have to wait long for your MRI and the bloodwork. I can understand being tired and tired of the clinic.

Get to feeling better and lots of ((((hugs))))


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

[jumpinjiminy]

It sounds like limbo island is ready for a break. Hammock bound and ready for cool refreshments with low key entertainment. What do we have lined up?

(((Hugs)))) back to you MVM, so sorry to hear you're having such a big set back. I hope you get the rest you need and can get on your feet soon. That soreness after spasticity is not a pleasant sensation. It feels like you got used as a punching bag that someone tried to pulverize. Do you get achy joints too? Like if your quads go into spasm, your knees will ache when it finally lets up? Glad to hear it's calming down some.

Chelenae, definitely time for a new neuro. That's three votes in favor. Aye.

Hi TSPrairie! Welcome to the limbo party. I hope you like your stay here.

LeahChris, I have trouble with my ears too. Saw an ENT and asked him if muscle spasms could cause them to build up fluid. He said it was more of a pressure regulation thing or allergy/inflammation thing. In my case, the determination was pressure regulation.

But I can tell you, it happens with every flare up. It started with a case of what was diagnosed as pneumonia about six years ago. Now I'm starting to wonder about that too. I've had trouble with that same ear ever since, and with this flare up and that of this past summer, it's been coming and going along with all the other symptoms. (wondering what antibiotics they gave me for that infection . . . hrmmm)

The ears gave me trouble last summer too when I was having problems with severe headaches. For a long time, it was just one year. Now the other ear is starting to join the band and play along occasionally.

Anyway, had worse symptoms today than yesterday and Sunday. Had shocks run down my arm when turning my head in the middle of the night, when I woke up having some flushes of weirdness more intense than have been in the last couple of days. Not sure why. Maybe it was what dietary.

Made an appointment with the neuro-opth for Thursday, and am tracking symptoms again in my journal. It's been two weeks since I've stopped journaling - that's when the fatigue and brain fog of the plague hit me so hard I just quit everything except the very basic necessities. Still there, but have some clients this week. Will try and push through it.

The digestive thing has me concerned. Still not acting right.

Spring break for the kiddo this week. I'm enjoying his company. It's a cold one, so we're cooped up together in the house. That's okay for now. I wasn't up for much running anyway.

[minivanmama]

jumpinjiminy - Good to see you. Yes my joints hurt. You described just how i feel. Today was better so i know i am on the mend. Thank you for thinking of me.

I hope your sx will calm down soon. I am glad that you are going to the neuro-opth. I hope things go well and that you get a good report.

If you keep haveing digestive problems call your PCP. I hope that it will start feeling right soon. I hope you get a good night sleep and shocking feelings.

Enjoy spring break. My kids are out next week and i am so looking forward to a break. Lots of ((((hugs)))) and enjoy your hammock.


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

[barelracer]

hi limbo!

hey all! welcome new limbolanders! this is a great place for support and to just vent!

MVM, i hope you get to feeling better, you are such an angel maintaining limbo even though you are feeling your sx's so bad! BLESS YOU!

JJ, interesting reading about you two's ear issues...! i never even mention them to my docs cause i already sound like a hypochondriac! that and i am outside a ton, thought that had something to with it...

i am in my heated hammock at the moment, emphasis on kidneys...waiting for the cabana boy...lol...sending out positive thoughts to you all!

[jumpinjiminy]

Thank you, MVM. Thanks for asking. They were better today. Saw a couple of clients. Wasn't sure if I was up to the task, but working with them cheered me up some. The sun was out and it was a nice day, albeit a little chilly.

This one is getting me down. This has probably been the scariest, most intense flare up since it all started last summer. If these are the previews of what's to come . . .

And I'm so sick of the running to this doc and that doc, test, test, test, nothing, nothing, nothing. I think our bank account has had enough as well. Every spare penny has gone toward this thing for most of the last year. What's the point? We have insurance but can't afford to use it, right? What's the point? We still go broke despite having the insurance. Too many things being affected, too many docs to consult with, just too much.

Seeing the GP tomorrow for a follow up. Hopefully get some direction on where to go next. I will ask his clinical opinion on crossing sulfas off my med list and an elimination diet, among about five other highlights we need to go over. Hope my memory is in working order for the task.

Off to the hammock for the night.

[Greg]

Cheers to all Islanders! Welcome new members hope you all get answers soon.

Just finished first week of test symbaticle. Well, Doc's on vacation till the begining of May or atleast out of town, don't really know if it is a vacation or not. Vacation sounds good to me so he's on vacation and I'm on a testing symbaticle. This is also the end of the first week on gabapentine. It has knocked down the pain and tingling to a managable level except for today.

For a while today I had really bad, on the verge of severe brain fog and dizziness. Along with the burning and cramping in my legs that the gaba was helping. I am not sure if these symptoms worsening with a vegence today was brought on by either the temp going up very sunny today here today. A beuatiful spring day. Or maybe that I didn't get very much sleep last night. Had to finish a paper for english lit and read the play raisin in the sun, so I only got about three hours of sleep last night. I hope it was one these things that cuased todays sx and not what ever is cuasing this getting worse on its own.

Well it is bedtime, well wishes for everyone.

[barelracer]

gaba

hey greg! (i actually kept your name in my memory long enuff to type it!!! YAY!)

Gabapentin is good stuff, never goes the whole distance, but takes the edge off! bad thing is, they usually have to increase it a number of times to get the right dose, i think i started at 200mg a day, now at 1200....and holding steady!

kidneys woke me up, so off to take some pain meds(eww, hate pain meds), and try to get some more sleep!

[jsoxfan618]

I couldn't agree with you more Jumpin'

And I'm so sick of the running to this doc and that doc, test, test, test, nothing, nothing, nothing. I think our bank account has had enough as well. Every spare penny has gone toward this thing for most of the last year. What's the point? .

I know how you feel. It has turned me from an optimist into a pesimist . More appointments. More test. More driving. More $. No answers. For what??? To be told its all in your head or its just anxiety? I don't think so!!! My wife along with a friend of mine encouraged me to go to Boston. So, I've asked my current MS Specialist @ UMass. to send a referral to a new Nuero at Mass General in Boston. My Nuero at Umass has been great, but as they say "we've exhausted everything we can do." Okay?? But I'm still having symptoms and they are getting worse. My hope is that the Boston docs will have more resources and even if it isn't MS they will be able to figure out whats going on. I'm hoping that my insurance will approve it because Boston is out of network.

So I went to the ER on Saturday for the second time in a week for chest pain again. They ran the same tests and labs as my first trip to ER and guess what... same results... nothing! They kept me for observation anyway and ran a Nuclear Stress test in the morning. I had to wait till 5pm the next day w/out food or much to drink for the test. After which they promptly discharged me because that too came back negative. The doctor was very cold. No bed-side manor at all and insisted that it was just anxiety. She pushed aside everything that my wife or I brought up. She didn't say it, but her body language and tone told me that I was wasting her time. I felt very embarrassed and angry after leaving. As if i did something wrong? To be honest with you. I did not want to go to the hospital in the first place. Oh... lets see here... ( a little sarcasm) I must have decided that today would be a good day for chest pain and a trip to the hospital.

So I'm home now and can't say I'm feeling much better. Still having pain. Put another call into the PCP to see if they will order an Echo cardiogram (the hospital doc wouldn't do it). Still trying to live life the best I can. Playing with the kids, walking and going to work (Doc cleared me to return to "normal activity.").

Thanks for letting me vent again. I hope you all have a better week on the Island. I just heard that we are supposed to get 3-6 inches of snow tomorrow, April 1st and its no Joke.
Have a good week everyone.
-Jsox

[Knit]

Seems like the best place for me!

Been on the emotional rollercoaster this past month. Need a vaca NOW lol.

Summed up is after my request of a Celiac and peanut blood test (sister has Celiac - and I've been told I'm allergic to peanut) I wanted concrete proof of the allergy. Both came back negative. Hmmm..

I started to list the symptoms of the last 6 months and started to research. Took the list to my PC doc who is awesome. More tests, MRI you name it. The neuro Dx me as MS just on the symptoms alone. But after tests came back "vague". "you'll need to come back every yr to keep on eye on the white spots in your MRI" "I'm going to let your PC doc say what it all is".

The dang neuro didn't give the results to my PCD until we called and had to have them faxed. Headed to UofM Clinic to a specialist. No more around the corner neuros for me as my PCD called them.

We've come to the conclusion that my "episodes" I have had happened when I was also near peanut. I have had some since finding out I'm not allergic..boy how I've missed anything peanut! Guess what - exact same things happen. At least when I was rushed to the hospital and treated for peanut I got steroids so it helped. We're talking close to 20 yrs this has been going on. Legs not being there when they should be. Balance issues vertigo...
Oh brother I'm shutting up!

So while I'm MS....I feel in limbo!

[Look2theStars]

Feeling pretty good still. Leg and hand are still not "normal".
I truly wonder if they ever will be? Somehow I doubt it???

But, still on Neurontin for now, and have been working on getting all the paperwork signed and info over to Shared Solutions for starting Copaxone. Sure is a lot of work!!

So, I have my next MRI in a few weeks. We'll see if anything has changed since 3 months ago. Who knows.

Hope your all doing well! God bless!!