Calling all limbolanders-limbo check in 6/28/2011

[minivanmama]

Hi Limbo Island!!!! It's time to limbo!!! Grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how you are doing.

How has your week been? How are you doing/feeling this week? I hope everyone is doing ok and feeling better. I know this heat is not helping.

Are there any doctors APPTS. 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 - There is no new island news this week. Take care in the heat. Just know that the thread will run for the next 2 weeks while i am recovering.

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

Well i am having my hysterectomy in the morning. I am a ball of nerves right now.

My sx are quite right now. My right leg is bothering me but i am glad that it is not too bad. So all in all not doing too bad.

Lots of (((((hugs))))) to everyone. Becareful in the heat and stay cool.

[photomama]

Good luck Minivanmama!! It is nervewracking, but it seriously is the best thing thing I ever did for myself. Just keep telling yourself that. It will be the best gift ever to never have to worry about that stuff ever again. Just take it easy after the surgery. We'll be thinking about you!!!

I had my GI appt and it went well. I can't do much more about my issues until my neuro appt because we believe they are due to my spasticity.

We are getting ready to leave for our trip to visit my family. I am excited and exhausted just getting everything done. LOL But it will be great.

The biggest challenge will be the zoo. My mother tore her achilles tendon and is in a boot so she will have to have a wheelchair. So I'm not sure whether I'll use one or not. Can't have a caravan of wheelchairs! LOL Either way, it should make the trip interesting! There was a time where I didn't have a choice, so I guess I am thankful I have one right now. Guess it will depend on the heat.

Stay well and cool limbolanders! Thinking of you all!

[Shallwearpurple]

hello

Minivanmama, I'll be praying for you!

I have an appointment with my first MS specialist Friday, July 1. I'm nervous. Not sure I can take one more doctor being flipant or dismissing my symptoms. I might implode on him if he isn't understanding!

Still having some symptoms, but none of them are as bad as they were a few months back. That concerns me...that he won't see enough going on and won't believe me.

We are going to see fireworks Monday. We are going to a location near stores rather than the parks we normally go to. I planned it that way because I can stroll through stores until it cools off a bit outside after the sun begins to set. We have to get there to get a spot in the heat of the day. I purchased two cooling neck thingys that you put frozen ice packs in. I used them for vacation. They helped, but don't last long enough. I'll be taking them. I also bought a small water mister that is small enough to carry in my purse. It was helpful on vacation. I'll be taking it as well. we have a larger mister, but I like the small personal one that can be hidden a bit.

Hope everyone else has a good week or two.

[jumpinjiminy]

MVM, I hope your surgery went well and you're resting and healing. Take it easy and know we're all thinking of you.

I'm finally starting to perk up after last week's downtime from the heat which was followed by a nice respiratory bug. It's now on it's way out and I'm back up to half speed again. They're calling for a hot one this weekend and I'm all ready for it.

I hope everyone has a nice holiday and finds a way to stay cool during the celebrations.

[TamTamLV]

Limboland

This is my first post here...

first, Minivanmama my hysterectomy was the BEST thing I ever did...

My (brief) story: I've had a lot of stress lately, and started on anti-depressants. Twice, I couldn't get out of bed for lack of energy - the 2nd time, I went to the hospital - They told me my eyes were dilated and wanted to know what drugs I took... I told my psychiatrist what was happening, and she suggested that I see a neurologist because she thought I might have fibromyalgia (spelling?). So, last Friday I saw a Neurologist, and he did the normal neural exam and told me I have "brisk reflexes" and that he thinks I could have MS. No mention of fibromyalgia. I've been freaked out since then. Tomorrow I go in for an NCV & EMG on my arms then on Friday, they will test my legs. I already gave half of my blood for a blood test (joking, it was only 8 vials) - I haven't gotten the results yet.

[barelracer]

hello limbo!

MVM! hope it all went well!!!! i agree with tamtam, best thing i ever did!!!!!the first 3-4 days sucked, but recovered FAST after that!!!!

tamtam, you will have to let us know how your tests went! my newest neuro said he was ordering emg and evp, but never heard from him about it again...(sigh, another loser dr to add to the list!)

i have a rant.. i havent been to a dr in a while, despite sx's, because besides my gi, gynie, and pcp all the docs treat me like s**t. with all the results they have, you'd think they'd have me dx'd by now. but instead i had my neuro say probable ms, gonna order this and this test, and put you on this med, then never ordered them, or called in med...

well, most sx's i just wait out...but man, cant deal anymore! sooooo...going to opthamologist tomorrow. my eyes hurt sooooo bad! vision is off, feels like someone is stabbing my right eye....but i am not sure if its a neuro opth, or reg opth... (nurse just gave me the first appt she could).

i realize this could be an occular migraine thingy, so really didnt want an appt, just advice...but she was insistant. i hate to go w/o insurance, (i explained that to her also), but dont want to lose any more vision than i already have, u kno?

but man, that feeling that i am going to end up paying to get the broom or quickie glance is making me anxious.... cant sleep! i cant afford to pay for useless visits, you kno?

ah well, what else am i gonna do? i have been bad so far this summer, but completely useless the last 5 days. oh well. we'll see what happens...!

hope you all are doing well as you can! enjoy the summer but stay cool!!!

[beepnip]

MRA

JUST TO LET YOU KNOW MY MRA CAME BACK NORMAL. NOT SURE I'LL REMEMBER TO CHECK BACK . BUT ONE OF YOU WANTED TO KNOW HOW IT TURNED OUT.

[Shallwearpurple]

doctors not following up

.....I've had my share of inept doctors, but they do see a lot of patients...so...

If a doctor says he is ordering tests such as MRI, etc... in my area, they often do it while you are in the office. If they say they will call you with the appointment and don't within a couple of days CALL THEM. I do. Thing slip through the cracks of a busy office.

If a doctor tells me he is going to call in a med for me, I check the pharmacy at around 6pm that day and again the next day. If nothing is there, I call the doctor or the pharmacy does..sometimes both. Again, sometimes something just fell through the crack.

We have to be our own advocate.

I am also keeping a notebook with notes on the date and what the doctor said in addition to copies of all of my tests and results.

[jumpinjiminy]

Thank you, Beep. I'm glad to hear it wasn't serious. That was a quick result!

BR, I can understand your frustrations. I'm glad to hear your son didn't have a brain tumor. And also that you found a way to get help on the farm. Those both must be a load off your mind, and body. In this area, it's really, really hard to find a doc, a GP even, that will see you on Medicaid.

Our state is notoriously bad about paying those bills on time, or at all, and the amount they get is so small, they often times lose money seeing MC patients. So they limit how many they will see, or won't see any at all.

This is why most people end up going to the ER for minor things like sore throats and headaches. The ER has to see them. Doctors don't.

Having some pretty bad eye pain today after having blurred vision all day yesterday. Eye movement is quite painful this time. Of course, it's Friday, so I'm debating on whether or not to call the doc about it. I wouldn't be able to go see one today anyway, since it's going to be 97F and my car has no AC. I'd hate to see what a 30 minute drive today would bring on.

[Shallwearpurple]

New Neuro today

Hello. Just got back from seeing my new neuro, 1st MS specialist. I like him. He's 90% sure that I do not have MS and is just as sure that all of my symptoms can be attributed to B12 deficiency which was only recently found after 8 years or so and just as many doctors.

He also said that my B12 isn't being treated aggressively enough. I was given one shot and then pills for 3 months. I can't remember what he said it should be...I'll post it when I figure it out. It was something like 3 shots per week for a certain number of weeks, stop and then repeat.

He said it will take 6 months to find out if this will work and relieve my symptoms.

I told him about the other neuro getting mad at me over my refusal to have a lumbar puncture before looking into other possible causes. He said that he would not himself want a lumbar puncture before checking into other possibilities and treating them first.

I see him again in 6 months. He wanted to let me keep in touch, just in case, so that I would not get dropped through the cracks again as I have been in the past.

I also wanted to share a couple of things he told me...

While looking at my MRI of my spine, he said it is not shocking to NOT see lesions there. Only 15% of people with MS have spinal lesions. 85% have lesions in the brain.

He sees many patients presenting with these symptoms, being told possible/probable/ and even actual MS only to find that they have B12 deficiency and not MS at all. He recently had a lady who was a paraplegic (spell?) and totally in a wheel chair. It was B12!


This is going to be long, but I'm hoping it will help some of you. My symptoms have included:

Debilitating fatigue

flu like pain

stabbing pain

shot-like electrical pain running an entire leg and other places

short insect-bite-like pain/then itch for a few seconds

numbness in small areas all over, moving around..a toe, a foot, a finger and part of arm, face, side
(He said typically, MS patients will present with larger areas of numbness like an entire side of the body at once.)

memory loss

speech problems-slurring, wrong words, words out of order, etc

vision-nastagmus and blurry, both eyes but no total loss
(he said MS patients typically loose vision in one eye completely at least for a time)

attention problems

trouble reading

thinking, confusion, foggy

stumbling

falling

dropping things and fumbling

urinary and bowel leaking

urinary urgency, unable ot empty bladder, pain in bladder

headaches

short of breath

heat made some of it worse, especially fatigue and speech

Those are the biggies.


I hope some of you also have B12 deficiency that wasn't treated aggressively enough and can leave limbo land.

I know that we can have B12 deficiency and MS, but for now I'm considering myself a visitor here and not a resident. I'm letting go of the worry, frustration, and fear until there's reason to think of it again. I'll keep all my notes, medical records, etc. just in case a flare comes up in a year or five, but for now I'm heading back to the mainland.

I will come back and post how they treat the B12 and if it worked. Maybe it will help someone else.

Blessings

[stalo]

I hope you only have B12, waydownsth, that would be wonderful!!! I had my B levels tested & they are normal, so I think that is not an option for me. But, the list of your sx could be mine, except, I have numbness over large areas & I have only brain lesions, no spinal ones.

I will be posting a relapse post on the regular board...want to get some varied opinions...check in later.

MVM...hope your surgery was a success & you are healing well.

[minivanmama]

Hi Everyone

I am home and doing well. They found pre-cancer cells in the uterus. They also had to take my right ovarie. So that is about it.

I am takeing my pain meds and getting my rest. I am glad to be home.

I am off to rest. Lots of ((((hugs)))) everyone.

[barelracer]

HELLO

hi everyone!
MVM, GREAT to hear from you! hope your resting well! at least w/one ovary you might not need hormone pills! scary to hear "pre-cancer", but glad they found it early!!!

i saw a regular opthamologist yesturday, had me there for hours....!!! all just to be told "its not your eyes, its your brain.." ????? so i asked for an explanation...he replied that i had inflammation, yada yada yada, and he thought ON, so i have to go back to my regular neuro/opth next week, they are trying for tuesday...

*sigh*

guess i get to muddle thru without treatment over the weekend...ew. but keeping my spirits up, making sure i wear the darkest shades i have, and staying as cool as i can..

tremors are not bad right now, thankfully!

oh, he did notice a med i was supposed to be taking, but i told him my neuro never called it in, and wouldnt return my calls...(automated answering mailbox)..... he was concerned i was not on it yet (dont remember the name?) but hopefully called it in himself...he thinks it will help..

i dodnt hold out much hope for the med call in...this place is ridiculous about that stuff!!! so i am trying to advocate, but keep getting ignored...! ewww....

JJ, i dont have medicaid even...i have no insurance at all..
which means i cant refill my gabapentin...its almost 300$, and i cant afford that! I have applied for perscription assistance from the makers tho, i hope i am approved!!! but i am sorry to hear you are having eye problems too...that sux!

anyhow, i hope you all have a great 4th!!!

[jumpinjiminy]

Precancer is better than cancer. So glad to hear you're doing well and they caught it before it changed.

Shallwearpurple, thank you for sharing about the B12. I'm glad the neuro thinks this will do the trick for you, and I really hope it does. My B12 checked out to be in the 400 range, so quite good.

Barelracer, for some reason I thought you'd mentioned being on medicaid. My apologies. I must have gotten you confused with someone else. It's ridiculous how much things cost without insurance. I get the feeling that prices are only as high as they are because of insurance, if that makes any sense. They've priced cash payers right out of affording care because of the deep, deep pockets.

I hope you find a way to get the meds you need, and good for you seeing the opthalmologist. I never called for mine this time. The right eye hurt so bad it gave me a headache. They're both a bit better today, a little pain, a little blurring, but nothing like yesterday. I muddled through without too many problems.

Seeing the new neuro on Tuesday. Maybe I'll mention it to him then.

[Heather1987]

Hi all, first time checking in.
Minivanmama, glad your surgery went well and they did the op before cancer had a chance to set in. Take it easy and hope you recover quickly to enjoy the summer.
Shallwearpurple, glad your neuro. thinks it is due to your B12. Can I ask what your level was? When all my symtoms occured for the very first time 2 years ago, my doctor said definitely due to B12 def. as it was at 132. Problem was when refered to neuro. he said definitely not, as not low enough.
Well this week we celebrated Canada Day with BBQ and fun out in the kayaks and canoes, thankfully we have lovely weather for it.
Tomorrow is monday so back to work but have MS nurse appointment to follow up on my copaxone which started just over 2 months ago. I then start hyperbaric oxygen therapy on Friday. hoping this helps but will let you all know. Hope you all have a good week whatever you are getting up to. Heather