Calling all limbolanders-limbo check in 11/9/2010

[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 you had a good weekend. I hope your week so far has been good and that you are feeling better.

Are there any doctors apt comeing up? Any doctors or nurses that need to swim with the sharks? Don't forget that if you need to scream to go to the middle of the island. Remember that you never scream alone.

In island news - There is no island news this week.

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


To ARchickadee - Welcome to the island. I am glad that you stoped by. I am sorry that you had a rough week last week. I know when your DH said that to you that just made things worse.

I am glad that you came to the island. We know how it feel and you can whine all you need to. That is what the island is for. We are here anytime good or bad. You don't have to be sorry. Come anytime.

I have a high pain tolerance and the EMG gets to me. So don't feel bad. That test is just bad. The only way i have i know to get get through it is. ONE - deep breathing Two - if they can play music in the room. Then play some soft music. Three - Close your eyes and try to think of something that will help you relax. I try to think of to beach. Four - just tell yourself you can do it.

I am sorry that you are haveing a hard time getting answrs. I hope you get to feeling better soon.I hope your apt on wednesday will get you on the road to finding answers. Let us know how it goes. I am glad that you stoped by. Keep on posting and letting us know how you are doing. Lots of (((((hugs))))).

Have a good day limbo island. I am off the the mall today. This is a busy week. My baby turned 6 yesterday. My little girl is turning 10 next week. So birthday party time in my house. My in laws are comeing at the end of the week. So i am busy.

Also this week my oldest is now as tall as i am. As for as how i am doing. My fatigue is at a all time high and i am haveing some vison problems. Other then that things are good.

Well limbo island have a good day. Enjoy the sun and i will check in later. Lots of (((((hugs)))))

[Shashi]

Good morning, Limbo Island!!! Today is the 30th anniversary of my 18th birthday! I've been celebrating all week with a party at my son's house and then my students had a party for me last night, and I'm going out Thursday for dinner with a friend. (Nothing planned for today though, even though today is my birthday.)

Nothing in diagnostic news, as I'm off the roller-coaster again after a brief hop back on it.

Symptoms are at a minimum right now. I am try to wean off the baclofen while I can, as I'm wondering if it might be the cause of some of my symptoms. If I can get off it, it'll be the first time in four years I haven't taken it. If it works, I may try to wean off the Neurontin too.

Other than that, I'm sticking to my new resolve to enjoy life, no matter what. I'm tired of sitting on the sofa feeling icky. If I'm going to feel icky, then I might as well be out enjoying my life and feeling icky. And so far, it's working!

Anyway, have a great week everyone, and don't forget to get out there and live!

Hugs,

Lisa

[nana-anne]

Hello to everyone on limbo island.

The weather outside is wonderful were I live right now! In other words, it's in the lower 60's (and in the early morning it's in the 50's, YEA) and just right for a walk. I've waited all spring, summer and the indian summer fall for this to happen. Can you tell I have a little problem with heat intolerance?

No appointments. We are waiting for some new symptoms to show up or the old ones to get worse. But while I wait, I'm getting as much as I can out of this "new normal" life.

I wish everyone a peaceful day on limbo island.

[minivanmama]

shashi - Good to see you. Happy birthday to you. Happy birthday to you. Happy birthday dear Lisa happy birthday to you.

I am glad that you are haveing a good and fun week. I am glad that you are getting back to life. I know it can be hard to get up and go sometimes but you just have to keep going. Keep up the good work and know that we are here to keep you going.

I am gald that your SX are minimum right now. I hope that comeing of the baclofen will help you feel better. I am praying that your SX will stay minimum for a long time.

Lots of (((((hugs))))) and enjoy the rest of the week.


nana-anne - Good to see you. I am glad that the weather is wonderful for you to get out in. I also have trouble with heat and the weather has cooled down in Ga. I am glad that you can get out and enjoy a walk.

I am glad that you get a break right now from doctors. I hope your symptoms will stay away for a while. I am glad that you are going to keep going and liveing your new normal life. Keep it up and know that we are here to help keep you going.

Lots of (((((hugs)))))


Well today was a good day. The weather was great. The sun was out and temp was around 74. It was a good day to be out running around getting things done.

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

[zuzu20]

hi guys i am still here. I have had a busy week knitting up a storm for a bizzar for saturday. So I had to put aside my laptop for awhile.

I have nothing much new to report except my daily headaches have gotten much better since I have been of Tylenol I really can't explain that one. My legs still are painful but at least I can get through the day with out a headache. I had one the other day but that was for other reasons

The new pill iam on that treats Parkinson has done well for me and the bug crawling, tingling and Charlie horses that have plagued me for months have disapeared. And I can sleep again I have had great nights sleeping again something that I haven't done for 8 years now. I can also get up at 7am and feel ready for the day. It's awesome but i must say I feel bad for others who can't sleep because I know the trouble of no sleep. I can feel my body trying to repair its self again.

I feel great up until the drug wheres off before my next dose. I am only left with slight tremor and weakness. My mornings are best for me as the drug still in my system but they come back by 2 in the afternoon.

I have no appointments this week except I am cutting off my hair tomorrow to short. I can't stand it any more and it intrupts my vision and I just don't have the energy to keep in place any more so i am chopping it off. Its just past my shoulders but I will miss it being long. however its time to let it go. Hope everyone has a good week. its pretty blustery and its cold outside burrrrrr here so I hope I don't get blown away....

[jsoxfan618]

Oops... I posted in last weeks link by mistake. Anyway, here is the update: I got the results from my sleep study last week from my MS Specialist. Oh by the way, the Specialist I've been seeing now Is not my original Doc. Its her "Fellow," which I'm not to happy with the fact that they did the switch, but so far he has been nice. I digressed... The Fellow called last week with the preliminary results from the Sleep Study and told me that I did not have sleep apnea. I was ok with that until (of course) I received a call yesterday from the Sleep Study office with news that I in-fact do have sleep apnea. So I called the MS Specialist back asking for an explanation? The Fellow, who called me back within an hour told me that when all the data was in they determined that I had stopped breathing enough to say that I had mild to moderate sleep apnea. So now I have another sleep study sched. I think they're going to give me a C-PAP. I'm hoping that this will at least help with my fatigue.

[Autumn934]

Formerly Scooter22

Hey All!

I'mmmmm Baaaacckkkk!

I was unable to keep the last ID, so I recently signed on again to MSWorld to get advice, to vent, and help others.

So, an update. I had an EMG test recently, which was normal, and the neurologist suggested, after much begging from me for a place or problem to consider next, he mentioned Devic's Disease, aka, Neuromyelitis Optica due to my presentation, positive VER's, negative MRI's, and symtoms mainly being walking, balance, falling problems and 4 bouts of optic neuritis, 3 bilateral, even with a neg NMO test spring last year.

I saw my neuro and he said that since it was negative once, the NMO test, that there is only a 5% chance I have it. I never heard this? Is this so? Also the fact that I "look so good", and HIS patients with Devic's are so much worse off than myself.

What else? We asked of a good neurologist for the future, and he mentioned seeing an MS specialist! This from the Dr who said from day one 3.5 yrs ago that it wasn't MS. He then started to discuss, without prompting from the big mouth (me), about how he has 2 patients with Benign MS and how little disability they had, and other stuff I don't remember. So, does he think I have benign MS, of which I think is a load of crock since MS is benign until it ISN'T, and wants me to see another MS specialits?!

So, really long story short, I am to get another brain MRI, and a second spinal MRI since I haven't had one in over 3 years, and the last ones were of terrible quality. Does it mean much of anything, or anything at all, if he put down Demyelinating Disease, NOS as the reason for the MRI's, w/ and w/o contrast? He also mentioned my gait and weakness, optic neuritis, visual disturbances, etc. Is he just listing symptoms, and does not mean for the Demyelinating Disease to be what he thinks it is wrong? I am confused for that part.

Thanks for reading to this long post. Any and all advice will be appreciated.

[minivanmama]

zuzu20 - Good to see you. I am glad that your knitting is going well. Good luck cutting your hair. I hope you stay warm and don't blow away.

I am glad that you are feeling good and getting some sleep. I am glad that you don't have any doctors apt this week. Keep up the good work and enjoy feeling good.

I think it is good news that the meds are working. I hope you keep see good results and keep feeling good.

Lots of (((((hugs)))))


jsoxfan618 - Good to see you. Boy what a run around. I hope your next test will give you a answers and that you don't keep getting the run around.

Lots of (((((hugs)))))


Autumn934 - Welcome back to the island. I just left you a post on your thread. I am so glad to see you back.

I wish i had some advice for you. I sorry that you are getting the run around. I am just so glad that you are back.

I hope your MRI will give you some answers. Just know that we are always here for you. I am glad to see you on the island. Keep on posting and letting us know how you are doing.

Lots of (((((hugs)))))


Boy has it been a busy day. I am ready for bed. I will see you in the morning limbo island.

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

[smilesoftexas]

Greetings islanders!

I've been sailing around the world (ms world) for a couple of weeks and I guess it's time to lower my anchor and come ashore. Here is my long story...hope you don't mind.

I am a 46 yrs old, wife and mother of two almost grown daughters. I am a fairly newly-wed...it will be a year in January! And I am a fellow limbo-nian.

I was DX'd with fibromyalgia back in 1999 which kind of begins my journey towards what we are thinking is an ms DX. The very first set of symptoms started one day, and I remember it like it was yesterday (though I can't remember things I did yesterday), when I was sitting at the computer and my arms went completely numb from my shoulders down to the tips of my fingers. I remember remarking to my husband at the time, that it was the strangest feeling. I went to bed that night and the next morning, I went to get out of bed and I couldn't move my legs...couldn't feel them or get them to do what I wanted them to. I was scared to death. I was alone in the house, dragged myself to the bathtub, crawled in and cried.

A week later and a visit to my PCP and I was DX'd with severe fibromyalgia. I was referred to a rheumatologist who started me on the journey to finding the right combination of meds that would work for me....not a fun ride I must say. I remember him saying something that at the time I just dismissed, but in hindsight...was pretty prophetic. He told me that some patients with fibromyalgia do go on to develop other diseases...and he said "It would not be out of the realm of possibilities if someday you develop ms". That was in 1999. I thought he was crazy...and quickly forgot about it. I was too busy dealing with the "fibro".

In 2003 I experienced terrible migraines, terrible tremors of my hands which eventually caused me to change career paths (I was a surgical sales rep and my tremors were too difficult for me to hide from my surgeons in the OR) and to seek out my rheumatologist again. At that time blood test showed a positive ANA and I was DX'd with Lupus and RA.

I went through a year of methotrexate, steroids, and about 13 different medications to reduce an array of symptoms. After a year of frustrating treatments and no relief I sought out a second opinion. The second rheumy said no lupus and no RA (although I still had a positive ANA). Hooray!! All I was dealing with was the fibro and at the ripe old age of 40...osteoarthritis.

Fast forward to 2006. I started experiencing spasticity in my legs, balance issues, headaches and a strange tremor in my neck. Went to the neurologist and ran the gamot of neuro testing...all tests came back normal. Symptoms eventually went away...and I marched along my merry way.

On Sept. 20th of this year I noticed a very distinct stripe of numbness down my tongue. At the same time I was experiencing numbness and tingling on one side of my breast, down my right arm and hand and in my legs. It was the strangest sensation and felt as if someone had taken a paintbrush and painted only certain areas with this sensation. I also noticed that my tongue was getting "hung up" on certain words and I wasn't thinking as clearly as I usually did. Time to go see my PCP. He sent me to my neuro and that brings me to limbo island!

Since that initial onset...every day seems like a new adventure. I never know what symptoms I am going to have day to day. So far, my brain MRI shows multiple periventricular lesions, cervical and thoracic are clear. My NCV was normal. Still have a positive ANA so am set to see my rheumy for more testing (lupus, RA, blah...blah) My neuro wanted me to have a spinal tap...did that yesterday and am now waiting for those results. My ms DX seems to hinge on the results of the spinal tap. I don't care what name they want to give it...just as long as I can treat the symptoms. Chronic illness is not new to me...but the limbo is hard to deal with.

I am worried about my job which I love (I am the manager of a ladies fashion accessories store) but have increased difficulty, and worried about how this might affect my relationship with my husband, although he has been amazingly supportive. I am just so thankful to have found all of you. Thanks for allowing me to hang out for awhile. I hear many of you have become island natives. I'm not sure whether I am just visiting or if I'll be here for awhile too. Either way....I'm just glad the natives are friendly and willing to listen!!! Looking forward to meeting you all.

Smiles

[jumpinjiminy]

Hello limbolanders! Happy Birthday, Shashi, and to your little ones MVM. I hope you all have great times this week! I'm in that phase of enjoying life too. Had a great weekend with my kids and a great start to the week. The roller coaster took a dip for a couple of days and is now back on track.

Diagnostically this week, there are some things starting to show up, however minor, it's something to go on. A few weeks back after seeing the MS doc, my wrist all at once became swollen and painful. This prompted a visit to a rheumatologist who ran some tests and found a borderline low C3 and WBCs in urine. Further urine culture found no infection.

Prior to this, GP ran tests and found D3 low, calcium high and PTH high normal.

Now, we're still watching and waiting. But the fevers have been below 100 for all but one short spike in the last three weeks. The longer they're gone, the more neuros symptoms go away. Neuro wants me to start weaning off the baclofen. At first I was furious, because it was the only thing that got me through this in relative comfort. But now, I see his point and have started cutting back today. All went well except for a big hip flexor/quadriceps spasm on the drive home tonight. Youch!

It looks like I either have an antibody negative autoimmune disease of some kind, or it's hyperparathyroid, or both. In the meantime, I'll take the reprieve from feeling like a constant bucket of flu virus.

Time to start planning for the holidays. Who's with me?

[minivanmama]

smilesoftexas - Welcome to the island. I am glad that you found us and dtoped by. I hope your get your DX soon and can get some answers.

You have been dealing with a lot. I am glad that you are done right now with the run around. I know being in limbo is hard. You feel so bad and yet they can't tell you what it going on. I know the waiting must be hard to.

I am glad that your huby is there to support you. I am glad that you found limbo land and know that you are not alone. Just know that we are here for you anytime you need us. Keep posting.

I also have OA so i know how that can make you feel at a young age. I hope that your fibro and oa will stay calm and that you can get to feeling better.

Let us know how your test comes our. I hope you don't have to stay long and that you get some answers and some treatment.

Keep on posting and letting us know you are doing. Lots of (((((hugs)))))


jumpinjiminy - Good to see you. I know we are haveing a fun week and the weekend is just around the bend. I am getting ready for thanksgiving and christmas so i am right there with you.

I am glad that you are back to feeling better. I hope you keep feeling better. I hope that your blood work will get you closer to some answers. I am glad no infection was found.

I hope that your spasms will stop and that they don't bother you. I know it can be hard to come off the baclofen.

I am glad that things are good. I hope you have a good weekend and keep feeling better. Lots of ((((( hugs)))))


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