calling all limbolanders-limbo check in 5/4/2010

[minivanmama]

Good afternoon limbo island. Its time to limbo the sun is shinning and the water is warm. If you are undiagnosed then this is the place for you. Come and tell us your story.

I hope everyone is having a good week. I hope the weekend was restful. How are you feeling this week?

Are there any doctors apt coming up? Any test this week? Any doctors or nurses that need to swim with the sharks? Remember the middle of the island is the place to scream if you are at the end of your rope and remember that you never scream alone.

In island news - No one went to the mainland this week. I wonder who will be next? I pray that we all get answers soon and can get off the island.

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.

I have a busy week. On Thursday i am registering my 5 year old for kindergarten. I am happy but also very sad. He is my baby and come fall all of my kids will be in school. Where did the time go. He has his spring preschool show tomorrow. Pray that i don't cry.

Well i am off to eat lunch and take a nap. (((hugs))) to all.

[bumblebee55]

Still on this Island

Hey All;

Still here...frustrated, but doing the best I can. After my appointment with the neurologist who "dismissed" me from his office and told me "you are going to be one of those people who have stange neurological symptoms for unexplained reasons..." I have given up going to the dr.'s. My PCP wants me to come into her office to discuss "things" and I told her "no." I have had symptoms for three years now. I am 55. All of my symptoms come and go...My frustration is because the MRI of brain and cervical spine were completed [U]without contrast; no lumbar puncture, no VEP.

I am frustrated because I feel "they" are not taking this issue seriously because of my "age" and "I don't fit any specific profile."

At the end of March, my feet (or one foot, hard to tell) wasn't lifting properly from the floor and I had about one week of "tripping" and fell at work, face down. What a strange experience...went down before I even knew what happened. Dislocated my shoulder. My feet are working fine now...going to physio for my shoulder.

I know I should be more "pro-active" about my own health...but have decided I would wait and see if I have another "episode" and given the events that have happended in the last three years, I am sure another one will happen. Would it then be reasonable to ask for an MRI [B]WITH CONTRAST?

Right now the only symptoms I have are strange "hot" spot on the outside of leg. Sometimes it is the right, sometimes it is the left. Sometimes the spot is hot, sometimes cold...and stange floating lights that dance across my field of vision. This comes and goes...so...

I guess I will stay on the Island for awhile

Take care everyone!

[TNchickadee]

Hi all,

I'm still with ya here on the island and could really use my cabana boy's services. What a weekend. I live in Nashville and my home was in danger of flooding. Thankfully the water receded before I had any damage, but I did leave for the night and it was pretty stressful.

I am extremely blessed that I didn't have any damage; however, there are so many others here in TN that have lost everything. Please pray for our state.

The stress of the weekend is taking its toll as I feel pretty fatigued most of the time. So, not much is getting done around here and there is lots to do. Oh well, can't argue with the body.

Mama, you go head and cry at that baby's show! I cried at all of them and am proud to say I did. My youngest graduates from HS next month and I'll be a bawling mess and cheering at the same time. Ain't motherhood grand?

Hope everyone here stays safe. In honor of Cinco de Mayo, I'm ordering margaritas - - raspberry.

Blessings everyone, Danni

[jamilea]

Mama!!!!


I'm sittin on that hammock you let me borrow today. My first PCP appointment is at 4:10pm. I swear the doctor will probably fall over when I give her my 5 pages of symptoms LOL!! She will probably call the guys in the white coats to come take me to that island you always talk about *wink*.

Please pray she will treat my symptoms so I can suffer a little less.

Thanks for being cool and supporting all of us. God bless you!

[bruised banana]

The sun is shining and the water's warm and the beach is beautiful. I'm sitting here with my Wednesday treat -- White chocolate carmel mocha with whipping cream and chocolate/carmel syrup.

Found out Monday that my Vitamin D and Lyme tests were normal. I was expecting a two-week wait. Now, the LP needs to be scheduled. If I don't hear from the neurologist's office by next week, I'm going to call. Now that I'm in the proactive mode, I don't want to stop the ball from rolling.

I finally got to talk to my opthalmalogist today about my field of vision test I had a couple weeks ago. It hasn't changed and she is also looking at optic neuritis. She said the vision field test is A-typical which makes it hard to say definitely that it is MS. She does see the lesion on my optic nerve, but it never has shown up in the MRI. She was surprised that the neurologist thought it was optic neuritis given the fact he didn't have her records and was only going by what my op. told me. She is going to call the neurologist today and speak with him and then get back to me. It may be that they do the evoked____test.

I still have this little part of me that says until I actually start the meds, there's still the possibility that the neuro. may say to wait. Only I'm going to be more proactive and insist on the meds. I'm 56 and feel a lot like bumblebee55. Drs. have a tendency to look at our age and say its just a way of life. But, its not. We know what is going on with our bodies and we need to make the doctors look outside the "box." My husband has seen how I have changed over the past couple years and has always believe I would get better. He came with me to my Dr. appt. and he actually saw my problems and heard it from the dr. Now he has accepted the fact that it could be MS. Now my husband can be my advocate as well.

I have a question of you all. From what I've read, it appears that some drs. won't start meds if there is only proof of one episode, that they want to wait until there is another one. I want to push for the meds if the neuro feels this is my case, even though I have a lot of clinical symptoms, lesions in the brain and possible optic neuritis which the dr. admits to but the LP doesn't show evidence of MS. Do any of you know what if the dr. would put me on meds?

Back to the beach. Good luck to everyone and stay strong.

Sandy

[minivanmama]

Good afternoon limbo island.

Bumblebee55 - Good to hear from you. I am sorry that you are so frustrated. I know it is hard to feel bad and no one take you seriously.

If you trust your pcp then go and see what she has to say. I don't think that it is unreasonable to ask for a MRI with contrast.

I hope that you still keep looking for answers. I have been in limbo for almost 4 years. It will be four years come June. If you don't like your doctors can your find others. I know i have had to change neuros and that made a big difference.

Keep us posted on how you are doing. I hope you get to feeling better and find answers soon. ((((hugs))))

TNchickadee - Good to see you. It is good to hear that you are safe and did not have any damage. I have a bother that lives in Franklin and he did not have any damage. I have been praying for y'all.

I hope that you get to feeling better. I know that the stress did not help. Just do what you can and take it easy.

I did cry and he did so good. I will be praying for you next month. I can't imagine HS i have one in middle school so i know it won't be to long off. I love being my kids mom.

Enjoy your margaritas. (((hugs)))

Jamila - Good to see you. Thank you for your kind words. I am praying for your apt. I hope you can read this before your apt.

I pray that your doctor will help treat your symptoms and can get you the treatment you need. Let us know how it went when you get the chance. Just take a deep breath and know that i am praying for you.

If the men in white cots have not taking me to the spacial place then they are not going to take you.

God bless you.(((hugs)))

I will be right back.

[minivanmama]

OK i am back. Had to get something to drink.

bruised banana - Good to see you. Sounds like you are going in the right direction. I hope the neuro calls you back soon and gets all the testing done that you need.

I know it must be hard for doctors just to look at your age and not take your seriously. I think that you should talk to your doctor about meds. I don't know it he would put you on meds.

I am glad that your husband goes with you. That is great support. My husband goes with me to my pats and it helps.
Keep looking for answers. Let us know when you have your apts coming up.(((HUGS)))


Shashi - I hope you are safe and did not have any damage. I hope to hear from you soon. I am thinking and praying for you.(((hugs)))


Well i am off to nap in my hammock. I will check in later.((hugs)) to all.

[mjan]

Hello limbolanders~!

Just wanted to add that I used to be on this "limbo" post in the past..then when I had to switch jobs/insurances ..was told I did not have MS, I gave up chasing for a name.

There are SO MANY conditions..toxicities and chemicals that build up and give us NEUROLOGICAL conditions..many that mimic MS. I would NOT want MS DMDs and find out I do not have MS after all. My first neuro ruled out everything he could ..and said he thought it was just a mild case or benign MS. Then when I had to leave his practice he stated its not MS.

I am 61 and it was earlier this year, and a new neuro who is trying to convince me I have MS. My flair of intermittent dizzies and balance issues was not even noticed much by me..I just stopped noticing. He did another brain MRI..nothing changed..same old lesions.

After 6 years NEW lesions in 2 months and an exacerbation that landed me in the hospital where i got worse.

OK..don't get excited.. I am going to see an MS specialist for a 2nd opinion and if and how I can take DMDs because of my kidney problem.

So.. I am not holding my breath..though for a minute at 61 I did think I do have MS now. I still need a cane to walk ..and my legs just dont' want to hold me up for very long.

Early June I see the new MS speciaist.. I am not holding my breath. My PCP is convinced I should not be working any longer and will help me get disability.

I have 4 other new diagnses to keep me busy and challenged.

Hang in there folks..at least we have each other.

Jan

[cherishedtiger]

Still here...

Yup... still in limbo... been 1 year 6 months. I think my neuro forgot about me, since he never returned any of my calls.
But now I am getting all new doctors - sucks because I love my PCP, but maybe a different neuro might do me some good. Because none of my sx have gone down, away or anything... been miserable with no answers.

Wish me luck with the dr!

[minivanmama]

Mjan - Good to see you. I am hoping that your apt goes well. I know that it must be nerve racking.

I hope that you are doing better. Keep taking it one day at a time. Hang in there.(((hugs)))

cherishedtiger - Good to see you. I hope you find good doctors that will help you find answers.

I think finding a new neuro will be a good step. A new neuro may run test and find things the other may have missed. I hope all your apt go well and that you find answers soon. ((hugs))

Well good night limbo island and sweet dreams. (((hugs))) to all.

[tinymommy]

Still here...not sure what I last updated on...

I went to the MS Specialist in January and had testing at the hospital in March. EMG was normal and NeuroPsych Evaluation...the doc administering it wasn't very concerned. However, my motor function was impaired and my IQ has actually dropped THIRTY points.

So despite the MS Specialist and the neuropsychologist not really interested in my case...my primary care doctor is still treating me with the assumption that I have MS but we can't prove it yet. I really feel blessed to have such a wonderful family doctor who treats my symptoms and works with me and is so understanding.


OTHER health-related news...

I had surgery on April 29th. I suffered rectal prolapse and chronic constipation. Surgery was supposed to be laparoscopic rectopexy to correct the rectal prolapse by attaching the colon to my tailbone so it doesn't prolapse anymore. However, he also had to open up my abdomen and take out about a foot of my colon because it was long, twisted, and "floppy" so hopefully that will help the underlying problem a bit. Recovery has been rough...and I don't really know what all is normal and isn't. But...hopefully I'll be feeling even better soon.

[minivanmama]

Tinymommy - Good to see you. I am glad that your surgery is over and behind you. I hope you recovery is fast and easy.

I have had my share of abdominal surgery and the recovery is not fun. Just take it one day at a time.

Your family doctor sounds good. It is great that he is treating your symptoms. Keep hanging in there.

(((HUGS)))


Well i am off to take my nap. (((hugs))) to all.

[hammellmommy]

I understand

To Bumblebee- I completely understand what you are going through. My sx have only been here for about 6 months, and are VERY similar to yours.
I have had MRI of brain (with and without dye),MRI of C-spine, EMG, Spinal tap, bloodwork, and visual field test. ALL of which are negative. So my neuro tells me, and I quote "All of your test are negative. In my opinion, there is nothing wrong with you-well, not physically anyway" implying that my sx are all delusional.

So I have decided to take matters into my own hands. I have an appt with an MS specialist from U Penn (I live near Philly) in August. If in fact this is MS i think she can help, and if not , she is probably way more familiar with copycat diseases that the jerk neuro I was seeing.
Keep coming here to the island. Minivanmama is awesome, and you will not feel alone.
I don't know about you, but other than on here, i feel completely alone.
Warmly,
Christina

[minivanmama]

hammellmommy - Good to see you. Thank you for the kind words.

I don't blame you for wanting to take matters in to your own hands. After a doctor tells you it is all in your head then it is time to move on. I think going to see a MS specialist is a good step. I agree that they can figure things out.

I know what you mean about feeling alone. I found MS World when I was feeling so alone. I was so glad to have found others in limbo. I am so glad that you don't feel alone here. Just know that even when you are not on ms world that you are not alone. (((HUGS)))

Well limbo island good night and sweet dreams. (((hugs))) to all.

[Shashi]

Shashi - I hope you are safe and did not have any damage. I hope to hear from you soon. I am thinking and praying for you.(((hugs)))

I'm here! I'm in East TN and all we got was a lot of rain. No flooding, thank goodness. I live on top of a hill, so most of TN would have to be underwater for it to flood where I am. It's awful though to see what happened in Nashville and other place west of here. My prayers are with all of the families there.

In other news, I was scheduled for an endoscopy tomorrow because of my GERD, but had to cancel it because I found out that I have a $1,000 deductible on my health insurance, and I can't afford the procedure right now. I am going to go ahead with the lip biopsy though. Even though it'll probably be negative, if there is even the slightest chance of escaping from this island, I'm going to take it.

And speaking of GERD, mine was out of control because I ran out of Prilosec and had a bad flare up, but my GI doctor prescribed Aciphex, which is helping a lot. (So is laying off the jalapeño peppers!) I found a couple of coupons to help me pay for it, so hopefully I can keep getting it because it really seems to work a lot better than Prilosec.

And that's it for me right now. I hope everyone has a great weekend.

Hugs,

Lisa