Calling all limbolanders-limbo check in 8/10/2010

[minivanmama]

Good morning limbo island. It's time to limbo! The sun is shining and the water is great. 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 and staying cool. How are you doing/feeling this week?

Are there any doctors apt coming up? Any tests 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. Remember that you never scream alone. Also don't forget the punching bags hanging from the trees. It is a good way to relive stress.

In island news - I don't think there is any island news this week.

Well 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.

Boy is my house quiet. It is just me and the cat at home. My kids had a good first day of school. I did not cry before my baby got on the bus. Once the bus pulled away i did cry.

My DH was home yesterday but went back to work today. So this is my first day with all 3 kids in school.

My spasticity had now moved down my right leg. I am not getting as much relife as i thought i would. I have up the baclofen and it has help a little but has made me very sleepy. So i am going to give it a few more days then i may have to call the doctor again.

The doctor has told me that if this did not work she was going to give me a botox shot. I was think that what a pertty sholder/neck i would have after the botox shot.

Well i am off to run some erands. I will check back in later. (((((hugs))))) to all.

To lily09 - I am glad that you did hear from your neuro office. I am sorry that your LP and your C-spine MRI came back normal.

I hope the 25th goes well. I don't know what they mean by talking about meds and treatment options. I hope that means that they are going to help you get to feeling better.

If you want to know what is going on then call your neuro. I know i would be woundering what they ment. I hope you get some answrs soon.

Keep us posted. (((((hugs)))))

[dyt777]

Just hanging out

Just got back from vacation and finishing up a round of high doses of augmentin for a sinus infection. Vacation was great. The heat would slow me down, but once I cooled down I was fine again.

I am thinking now that the increase in my sx's were from that sinus infection. Although I still have some numb or tingling and weakness, it is much improved. Also my vision is much better and my eye is NOT drooping. Still doing a lot of word mix-ups and having slight tremor in my arms and face but it is much improved.

My neuro appointment is for Sept 1 and so I am still just hanging around. I have learned that patience is needed and there are no quick answers. So I am getting my records together. Any suggestions besides MRI films and test results about what I should bring?

[Shashi]

Ouch. That's all I can say. Ouch! Ouch! and double Ouch!!!!

I hope everyone else is doing well and getting closer to finding answers.

Hugs to all,

Lisa

[artteacher]

Got the results this afternoon. There is no change from past MRI. Still showing the same lesion, no change in size, as was there last August. The doctor does not know why I have the symptoms I am having or why the lesion is still there. I guess it is a mystery that God is to know and me to trust him.

Stay cool

[felicheeks]

CHECKIN IN...

I HAVE AN APPT. TODAY WITH MY PCP TO LET HIM KNOW THAT MY NEURO IS PSYCHO...WELL, AT LEAST TO LET HIM KNOW I WANT A 2ND OPINION. BEEN HAVING SYMPTOMS EVERYDAY FOR 4 MONTHS WITH NO HELP FOR FLARES OR ATTACKS.

IT'S HARD FOR ME TO LAST A FULL 8 HOURS OF WORK, SHOOT...IT'S HARD TO GET OUTTA BED IN THE MORNING, BUT FOR SURE BY NOON OR ONE PM IM DONE...TOAST. I FEEL LIKE IM NEVER GOING TO GET ANY HELP. UCSF MS CENTER STILL HASN'T CALLED.

I WILL STAY OPTIMISTIC BECAUSE EVERYONE HERE HELPS ME FEEL THAT WAY. I'VE BEEN USING LIDO-DERM PATCHES FOR ME BACK AND LEG PAIN, THEY WORK...I WISH THERE WAS ONE THAT COVERS MY ENTIRE BODY..THEN I'D BE ALRIGHT...LOL...

[minivanmama]

dyt777 - Good to see you. I am glad that you had a good vacation. I know how the heat can be. I am glad that once you cooled down you were fine.

I hope you get well soon and that your SX will keep slowing down.

Sept 1st will be here fast. I would bring a list of SX and queistions. That is the only thing i can add. Just sit and enjoy the island. Just keep hanging in there and posting to let us know how you are doing. (((((hugs)))))

Shashi - Good to see you. I hope you heal soon and you are feeling better soon. (((((hugs)))))

artteacher - Good to see you. I am sorry that you did not get answers. I know how frustrating that is.

Thank you for letting us know. I know you are frustrated. Just know that we are here for you. Just keep trusting in god and know you have our support. (((((hugs)))))

felicheeks - Good to see you. I hope your pcp apt went well. I know it is hard to be optimistic when you just feel so bad and the neuro is not helping. I am sorry that you are feeling so bad. I know it must be hard to keep going to work and keep getting out of bed.

I hope your pcp can give you the help you need. I hope he can get you in to see a good neuro for a 2nd opinion. I think that is good idea.

Keep on looking for a good doctor. There are good doctors out there that really do want to help. I know how you feel when it feels no one wants to help. Just keep up looking and know you have our support. We will be here for you good and bad.

Let us know when you can how things went. (((((hugs)))))

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

[jsoxfan618]

Hi everyone,
Minnivan- I hope your spasticity has let up a litttle. Ouch. I feel your pain.

Dytt7- its good that you are bringing all your record with you. I would make copies for your self as well. you never know when you might need them again. I would also like to suggest that you bring someone with you to the appointment. Someone who knows what is going on with you and who can ask questions or write things down in case you forget.

Art- Hang in there. Its hard not having answers. Sending prayers.

Felicheeks- I can sympathize with the work thing. I work second shift (40hrs). I go to work just when I'm running out of energy for the day. luckily I have a co-worker who has Lupus and possibly MS, so she can understand what I'm going through. Good luck with your PCP appointment. you can throw your Neuro to the sharks if you want.

I had a great weekend in NH at the lake. Spend a lot of time in the water. I was actually able to hike up a mtn with my son. Its been a pretty quiet week here for me in regards to doctors. No appointments to speak of. I do have some strange new symptoms that have been happening. For example, pain sharp pain in my toes that seems to come and go all day and all night. Not sure what that's all about. I haven't stubbed my toes or anything like that lately. They're not swollen or sore to touch either. i've been noticing a slight twinge of electricity in my upper back/neck when I bend my head. Don't know what that's about either?

Anyway, I hope you all have a great week.
-Josh

[felicheeks]

SO.....THANK YOU GOD

I'M SO GLAD I WENT TO SEE MY PCP. HE IS FINALLY BACK FROM AFRICA. I TOLD HIM HOW MY NEURO HAS BEEN TREATING ME AND THAT SHE WOULDN'T REALLY GIVE ME ANY TREATMENT. I TOLD HIM ALL SHE WOULD TELL ME IS TO WAIT FOR THAT PHONE CALL FROM UCSF MS CENTER.

I TOLD HIM THAT EVEN AFTER THEY CALL, I NEED TO CONTACT MY INSURANCE TO SEE IF THAT DOCTOR IS IN MY NETWORK...I TOLD HIM THAT STANFORD "IS" IN MY NETWORK FOR SURE. AND I TOLD HIM OF ALL MY SYMPTOMS.

HE SAID, LETS NOT WAIST ANYMORE TIME, HE REFERRED ME TO STANFORD, AND SAID HE WOULD GET ON THE PHONE WITH MY NEURO TO LET HER KNOW THAT THE NEXT TIME I GO IN TO HER OFFICE WITH AN EXACERBATION OR FLARE TO TREAT ME WITH CORTOSTERIODS OR MS MEDS...HE SAID IT SHOULD HAVE BEEN PART OF HER TREATMENT PLAN FROM THE START.

HE SAID HE DOESN'T KNOW WHY SHE HAS LET ME SUFFER FOR SO LONG. THANK YOU GOD.

[devsmomma]

Hi all sorry if this is to long...

Found my way to msworld a couple of weeks ago and finally joined last week. My "journey" started about two years ago and still to this day I have no diagnosis although things have definitely sped up in the last two weeks as my doc is finally starting to "wake-up" :P

I'll try to sum things up the best I can. I originally went to the dr. for severe back pain. Was diagnosed with spondylolitis, and slight scoliosis. The severity of both problems wasn't enough to be causing the type of pain I was having according to the dr. He gave me a prescription of sulendac and sent me on my way. told me to start walking and stay on the meds.

Ironically the same day of that appt. My left arm went numb, tingly and felt like it weighed 100 lbs. The side of my face went numb also. He told me to head to ER to make sure I wasn't having a stroke. All testing came back fine and they sent me on my way. Doc sent me to have nerve conduction tests on my left arm figured I had a pinched ulna nerve due to the tingling lingering in my fingers. The ulna nerve test showed only mild nerve issues nothing they were concerned about as it wasn't anything operable or even worth giving meds for.

Other than a trip to the urgent care for major muscle spasms in my back I avoided going to the dr. I was beginning to think he thought I was fruity. From Dec '09 until July '10 the tingling has progressively gotten worse and now both hands up to my elbows tingle 24/7. My feet and legs up to about mid thigh have also started tingling. I get twitching in my arms and legs. I get numbness in the side of my face, weird headaches. I'd forget my head if it wasn't attached, I trip over nothing. My eyesight is weird although I passed and eye exam and only needed a slight prescription for reading, computer etc. In the eye drs opinion my eye stuff isn't "connected to any issues with my eyes".. ehh? lol but could be neurological.

An interesting side note my symptoms are worse the week before and week of my period..which just dawned on me in the last few months. Once my period is over I feel better..the symptoms are still there just less intense. btw I'm a 36 yr old so no menopause issues. I don't even really get pms stuff most months.

Anyway I know I'm forgetting alot of stuff.. but in July I passed out. ER said vaso-vagal response and sent me on my way after passing all their tests and told me to follow up with my dr. My dr sent me for an MRI w/o contrast and a Holter monitor test. The Holter test came back normal. The mri showed scattered t2-intensity lesions in the supratentorial white matter suggesting demyelination.

So here I am.. doc thinks possibly could be MS. Waiting now for a neuro consult which isn't scheduled until Dec. although they did put me on their cancellation list when my dr called them back with more info on my symptoms.

For now I'm just waiting around dealing with stuff as it comes up.

[mjan]

I'M SO GLAD I WENT TO SEE MY PCP. HE IS FINALLY BACK FROM AFRICA. I TOLD HIM HOW MY NEURO HAS BEEN TREATING ME AND THAT SHE WOULDN'T REALLY GIVE ME ANY TREATMENT. I TOLD HIM ALL SHE WOULD TELL ME IS TO WAIT FOR THAT PHONE CALL FROM UCSF MS CENTER.

I TOLD HIM THAT EVEN AFTER THEY CALL, I NEED TO CONTACT MY INSURANCE TO SEE IF THAT DOCTOR IS IN MY NETWORK...I TOLD HIM THAT STANFORD "IS" IN MY NETWORK FOR SURE. AND I TOLD HIM OF ALL MY SYMPTOMS.

HE SAID, LETS NOT WAIST ANYMORE TIME, HE REFERRED ME TO STANFORD, AND SAID HE WOULD GET ON THE PHONE WITH MY NEURO TO LET HER KNOW THAT THE NEXT TIME I GO IN TO HER OFFICE WITH AN EXACERBATION OR FLARE TO TREAT ME WITH CORTOSTERIODS OR MS MEDS...HE SAID IT SHOULD HAVE BEEN PART OF HER TREATMENT PLAN FROM THE START.

HE SAID HE DOESN'T KNOW WHY SHE HAS LET ME SUFFER FOR SO LONG. THANK YOU GOD.

WOW Felicheeks..what a wonderful PCP. Too bad his timing and yours was off when you needed him the most.
Sounded like he's gonna kick some butt for you!!!!

Be well.. soon..my dear

Jan

[felicheeks]

guess what...

SO...I JUST GOT A CALL FROM UCSF MS CENTER...SEEMS LIKE SOMEONE PUT FIRE UNDER THEIR FEET SO I'M SCHEDULED TO BE THERE 9/10/2010. I TOOK THE APPOINTMENT.

[minivanmama]

jsoxfan618 - Good to see you. I will feel better soon. I hope sooner then later. I am glad that you had a good weekend. I am glad that you got to mnt climb with you son. That is great.

I hope your new SX will get better soon. I have had the electricity feeling before when i have bent my head down. I hope you get to feeling better soon.

(((((hugs)))))

felicheeks - Thank you for letting us know how your apt went. You sound like you have a great PCP. I am glad that you have a good doctor that wants to help you. I know you are relived.

You have a good game plan and i am glad that you now have a apt with the ucsf ms center. I am hopeing that you get answers and treatment. I am glad that things worked out and your PCP is there to help you.

(((((HUGS)))))

devsmomma - Welcome to the island. I am glad that you found us. I am sorry that you are looking for answers. You can hang out on the island as long as you need to. Post any time and don't worry about how long it is.

We are here anytime you need us. Just post and let us know how you are doing. I am glad that you are now on the right track to finding the answers. I am sorry that you have to wait till dec to see the neuro. I hope you can get in sooner.

I get the numbness on my face and the tingling in my arms and legs. So i can understand how that feels. I can also understand how your symptoms get worse during that time of the month. I hope you get to feeling better soon. I know that it can be overwhelming to be going through all of this.

Keep on posting and let us know how you are doing. (((((hugs)))))

mjan - I hope you are haveing a good week and feeling good. (((((hugs)))))


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

[zuzu20]

MRI DATE finally

hey guys still here. I finally got a date for my Brain/spinal MRI take a guess. well its set for Next JULY 2011.... Ouch that's a long wait. But I really like this new neuro I have she's great she's really getting things done, where the last one I saw two years or so ago just gave me pills. Didn't really take me seriously. She's on the ball Said she would send me to a Urologist next day I have an app for September, Thats fast. My own GP is so slow I have to phone to remind them. I am also to go to physio three to four times a week at the hospital where they will work on my walking and ballance. Though I can't see how its going to get better every time I try and do excersise and mild walking what not I get worse. So who knows. I would really like to get walking and my balance better. I was cleaning my room which is a small room took me all day. Sitting and puttering sitting and puttering. :P but got it done plus a little vacuuming done. from a chair that is. LOl....

[Jennyfoo]

Kind of weird turn of events. I've not been back to neuro, who just told me over the phone that it's "probable MS" they're ultra booked and he's going on vacation so my next appt isn't until Sep 10th or something. I got a copy of the report from my MRI and it said I had lesions consistent with a demylenating disease, so the dr call wasn't a big deal. I already knew. Lol. Well, they had me go back and do another MRI with contrast last week.

My pcp's office called me today(wed) and said that they'd received the MRI report and that my dr wants me to come in asap to go over the results. They wanted me to go in first thing in the morning, but hubby's got a lot of meetings, so I go in fri morning after another trip to the opthamologist to check my eye infection.

So, i don't need to wait a month to find out what's up after all. My pcp office is incredibly busy. They try to do everything they can for you over the phone, etc. Them requesting I come in to go over the MRI is pretty big. A already know I have lesions, so I'm guessing they're worried about ms too and me getting proper care, because specialists are few and far between here. Either that, or the contrast MRI showed something even worse, but I don't want to go there. Lol!

Things have really settled down in my home this week. Three kids back in school means quiet mornings with my little guy and a lot less stress. The eye infection's thrown me for a loop though, so I've just been dragging really bad. We are doing our first real, consistent diaper ditch with the little guy and he's doing amazingly well. Only one accident today, and it wasn't too much for his training undies to absorb. We avoid pull-ups and do real training pants cuz pull-ups are just too much like diapers, so we only use them for bedtime. I think we waited a little too long for potty training, he's been ready for awhile, but I wanted to wait until the chaos died down and the older kids were back in school. The good thing though is that it looks like he's going to be a piece of cake to potty train. Yay!

[jsoxfan618]

Good luck Jenny! I hope you get the answers you need. Sending some prayers.