calling all limbo-landers limbo check in 2/15/2012

[minivanmama]

Good Afternoon limbo island! The sun is out and the temperature is great. It is a good time to come and visit the island. Grab a cabana boy or girl and order something to eat and drink. Garb a hammock and tell us how your week has been.

How are you doing/feeling this week? I hope everyone had a good valentines day.

Are there any doctors apt this week? Any test this week? Any doctors or nurses or there staff that need to swim with the sharks? Any one need to sream?

In island news - Welcome to all our new limbo islanders. I am glad that you found us.

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


Sorry this is a day late. I spent the day with my DH and had a great dinner out last night. The last few days have been busy but i hope that things are slowing down now and i can get back to a normal pace.

I am feeling ok. Cog fog is better. The leg pain is really bad today. So i am resting as much as i can.

Well i am off to rest and do some house work before the kids get home. Lots of (((hugs))) everyone.

[gomer]

Hi MiniVan..........

I just had to grab the ferry and visit today, its been a long long time since I have been on the island. Seems as great as ever and Limbo Island was a real life saver for the time I was in limbo pending formal Dx.

I wish you success in your own pursuit of answers, you deserve to have real answers. If anyone understands how complicated and frustrating the road to a proper MS Dx can be, its gotta be YOU.

I also want to say THINK YOU for being here when I need you.

To all you Limbo Islanders, MiniVanMama is one fantastic LADY and everyone who has been here or residing here now, you have a wonderful ANGEL, I bet she even drives a MiniVan..........

Gomer Sir Falls-A-Lot

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[jumpinjiminy]

Gomer, you are so sweet. I agree with everything you said above about Minivanmama.

MVM, you know what? It doesn't matter if the thread goes up a day late, two days late, or a week late. Just the fact that you pop in and take the time to give us limbolanders a place to gather and share, and your very generous and thoughtful support means the world.

I really hope we manage to give you enough back in return for all you do here.

[mommyRN]

MVM,
I'm thankful to have this place to visit. Can't share these things with family or even close friends sometimes. SO what if you post late, it is kind of you to do this!

I'm glad to read your fog is better, but hope your legs are getting better now as well.

I had my LP follow up today, but have a busy night yet so will post later. I really need to talk about it though.

Talk to you all later.

[momto3girls]

I'm in limbo and I'm scared. I had an MRI that showed two areas of demylination. Along with my new onset migraines, numbness in my left arm/leg and vision changes in my right eye my initial neuro was on the fence between MS and complex migraines. Ok... I can deal with that.

Then I got in to see a MS neuro specialist who found a positive Marcus Gunn pupil response. So that along with my MRI results and how I presented clinically he is pretty certain that it is MS. I have a repeat MRI in a few weeks and then he said we will discuss what's next.

I am scared that it will show more areas of demylination. I am scared that it won't. I'm scared what this will do to me and my family. I am 36 and have three young daughters. I am scared that I will never do the things I used to do. I am scared that I will end up blind or in a wheelchair. Scared of so many things

Thanks for listening.

[momto3girls]

Forgot to mention that my LP and VEP were both normal. I just want to know what's going on, MS or not. The not knowing is the pits!

[SimpleGrace]

Hi, all! Just realized this is where I should be posting. I've been diagnosed with Chronic Fatigue Syndrome, but doc thinks it may be MS. Dad had MS. I have a 3T MRI on Tuesday, and then I have an appt at UCSF MS Clinic on Mar 21. I just want to find out for sure. If it is MS, I want to start treatment ASAP. If it is not, I need to figure out what I can do to minimize the symptoms of Chronic Fatigue Syndrome.

I'm just wondering if very many people were diagnosed with CFS before MS...

Thanks for providing this place for those of us in Limbo-land!

[jumpinjiminy]

Hi Michelle. My first dx was chronic fatigue over 20 years ago when they didn't know what else to call it, then it was migraines, then Hashimoto's thyroiditis and hypothyroid, then complex migraines. Several docs have tried treating me for depression over the years, it never works and often makes the fatigue worse.

I'm making progress on it, but it's still with me. It's my worst and most life-changing, enduring symptom. It's also a long process to pin down what's causing the fatigue. For me, it was multiple factors, all of which haven't been identified yet.

I think it takes years to rebuild a depleted system, which is probably where I'm at. But every little step toward better health has an impact. Some of it is so slow, I couldn't tell it was doing any good until after looking back over the last year or two.

Don't be discouraged if your MRIs come back clean. Mine did and I was upset that they weren't revealing any clues. I see this now as a good thing. Whatever is going on hasn't fully expressed itself yet and I'm hoping that gives me time to steer this ship the other direction with a change in lifestyle habits.

I'm sorry you landed here in limbo with us. But since you're here, welcome, and let us know how everything comes out.

[Campbell27]

Next step

I think one of the reasons a DX is important is at least now you have a direction. Most medical conditions are unpredictable MS seems like one of the worse, but I'd rather know than not know.

Still haven't had my "Ah Hah" moment that has sent me running back to the doctor. Keep hoping that it'll all pass like it has before and I can go back to ignoring the weirdness of it all instead wondering when or what will make me make that call.

Happy trails everyone.
Jackie

[jsage]

Happy Saturday everyone!

minivanmama, glad you finally found where you left your brain. It's pretty frustrating to have a big blank spot between your ears; it happens to me about once or twice a week now. I am sorry that your leg pain is continuing; I'm sure you must have tried the usual suspects like gabapentin or Lyrica. Can your doc give you anything to help?

Like gomer and everyone else said, thanks for being such a wonderful hostess for all of us

mommyRN, I hope that you've been feeling better this week. By the way, you nailed it. This is the place to come and talk. The uncertainty is not just a burden on us, it's a burden on our loved ones. Often we can't talk to them because they've not yet come to terms with what's happening. Having a place to vent, to ask stupid questions, to read what others are going through is a life-saver.

momto3girls, MichelleBowden and Campbell27 - I'm sorry that you have to be here, but I'm glad you found your way here You'll get great information from the forum members, be able to ask about test results and get advice based on experience. What more could you ask for?

This has been a tough two weeks for me. I had a little break from the pain last weekend, but it didn't last long. It's not excruciating, lie-writhing-on-the-ground kind of pain. Instead it's relentless stabbing, burning, raw, aching pains that come and go all day long. I'll go three or four nights with little sleep, then finally crash and be late for work.

I need to follow up with the MS doc and the neuromuscular doc, but right now I just don't want to. I don't want any more tests, I'm kind of tired of them. On the other hand the pain and fatigue are making my life not so fun.

Anyway, today is supposed to be paperwork day, so I'd better get back to it.

I hope you all have a pleasant weekend!
- john

[momto3girls]

I hope the week ahead is better for us all! So glad that I found this place to vent

Sometimes I wonder if it's all in my head. That maybe when I have my next MRI it will be perfectly normal and I can go on my merry way! Wouldn't that be awesome???

[PuppyMumma]

Loving wife of hubby in limbo

MVM, thank you so much for starting this thread.
My hubby has been in limbo for 6 years now and we only HEARD those two little letters three years ago, but still no DX. Ever since he has been testing on and off and every time we hear, "can't confirm, can't rule out."

For the last three years I have been drinking in all the info I can find about MS. The docs say it's either MS or brain damage from several head injuries; I say that if it's brain damage, why do the symptoms come and go. Everything I have learned tells me it's relapsing/remitting MS. The frustrating thing is that everything I learn also tells me that the best thing for his relapses is treatment, but no DX, no treatment either.

The best thing about finding about that it's MS (which I believe with every fiber of my being) is that I no longer think he's going to die every time his symptoms flare up, which is exactly what I thought every day of his relapses (which last for 2-3 months a year) for 3 years. My mom, who is always the sensible, non-reactive one, and also an in-patient hospital pharmacist, says we should consult a lawyer if treatment is withheld much longer to find out if we should be pursuing action against the doctor or the insurance company. Does anyone have any experience with this. Nothing like that had ever occurred to me. I just know that he is living in misery and I am doing my best to try to help him cope.

[jumpinjiminy]

Momto3girls, congrats on the normal test results. We all understand the fears you're experiencing right now. I just wanted to share that my neuro-opth mentioned a Marcus Gunn pupil can be caused by a migraine. It was in my differential on her paperwork along with demyelinating disease. I had a normal LP and VEP, too. Despite a long history of migraines without aura, my MRIs were clear, too. I had my first aura two weeks before the scarier stuff started happening in the summer of 2010.

No matter which they decide to label it, it is going to be all in your head. Unless, of course, it's systemic instead.

Another thing to share, I started having migraines around the age of 27. Around 30 my balance went off which made me leery of heights and climbing ladders. I think around that age I may have had a case of optic neuritis. My depth perception got bad temporarily, for a year or two, actually. I bought a blue car that everyone else swore was purple. The optometrist picked up a mild color vision loss and sent me to an ophthalmologist to get dilated who saw nothing. I went on my merry way, unaware of the possibilities of what that meant. I'm grateful for that.

There were little signs here and there that would come up and then go away. I'm mid-40s now and still walking, talking, seeing, and still have incredible balance compared to most, except on occasion when it goes off for a few days. Symptoms are more frequent (pretty much daily except for a rare reprieve that can last a couple of weeks) and more intense, but nothing unbearable except the fatigue, which has pretty much wrecked my career plans several times over including just last month. But I'm still trying, learning new things, adapting, planning for something more sedentary and nipping at it little bits at a time. I will weather this storm, I always have, and so will you.

Compare this to my grandfather who had MS. He was diagnosed around the age of 30. They asked him to leave work at the age of 48. He would miss work a few days at a time. I don't know if they asked him to leave because he started needing a cane or because of the absences. A few years later he used 2 canes. Then maybe ten years later a walker. Around the age of 63 he had the only big flare up that took so many things at once they thought it was a stroke. He lived in a wheelchair after that until he passed at 68 from complications of MS. This was in the day before they even used steroids to treat it and before they did PT, ST and all of those other function restoring treatments. I often wonder how long he might have lived if they had the technology then that we do now. We're talking 30-60 years ago.

Now, I've had a change of heart and mind over this whole thing that's been a long time coming. I'm seeing the neuro this week for the funny sleep issues with this latest flare up, and he'd better darn well not tell me it's MS and offer treatment. After reading here for a long time, I've convinced myself it's likely not worth the price, the pain or the side effects for me.

What I have is pretty mild and slow moving, especially if it isn't showing up on the MRIs or any other test. Maybe I can squeak out another half-way decent 25 years without scarring up my body with needles sticks everyday, suppressing my immune system (cancer runs in my mom's family and is in my genetics as well), or putting up with worse flu-like symptoms everyday for fewer injections. Without MRI lesions, they have no way to monitor progress. What's the point?

My current docs treat the symptoms and the do a great job of it, with the exception of the occasional out-of-the-blue issue that's too painful to be controlled by baclofen. Several docs I've spoken too have warned it's best not to treat anything when the treatment is worse than the disease process itself. In my case, I think they're right and if this ends up turning out to be MS or some other nasty autoimmune disease, I might very well decline treatment at this point if it's offered.

I've been finding ways to adapt and deal with this whatever it is my whole adult life without any treatment to try to stop or slow it down. What's another 25 or 30 when the outcome is so questionable anyway?

I hope this long, rambling reply didn't bore you to death. I just wanted to share that not everybody has a fast-moving, severely disabling disease process, even without treatment.

Jsage, Happy Saturday! I'm sorry you're suffering lately. Hugs. I hope you feel better soon.

PuppyMama, welcome. Your husband is so lucky to have a caring, understanding wife like you. I wouldn't know anything about getting a lawyer for denying treatment. I do often think the insurance companies dictate what is acceptable evidence for treatment. They can afford big time lawyers, but sometimes if a person just calls to talk to someone at that insurance company, I hear they often cover things for the patients without the physicians having to send in appeals and such. I haven't tried it personally, but have heard that from several different sources.

[Jefferson]

Just saw my PCP Friday

Hi Everyone,

I saw my PCP Friday and he said that I have all the symptoms of Post Polio syndrome, and I was given the live virus Polio vaccine and have the antibodies the blood test that test for polio will not confirm that I had polio. This is because the blood test checks for polio antibodies, by the way that test cost about $475.

He does believe that I have other neurological problems, other than the spinal tumor that I had removed in 1958 at the age of 15. He and and another doctor friend that I have both believe that I have other neurological problems and the big problem is there are some many neurological diseases that have the same symptoms it would be very costly to fine out just what disease I have.

I hope that this helps you know why we have so much trouble having doctors that stop at our original problem. The insurance companies just don't want to spend the money for all the test it may take to determine just what is now causing us problems, so they mostly just stick to our old problem of having a spinal tumor.

My best wishes to all,
Jefferson

[momto3girls]

Jumpin Thanks for the info and kind words! You are absolutely right, I don't want to have to go through treatments if they are not needed! I am hoping my next MRI is either unchanged or (miraculously) clean. If only I didn't have those areas of demyelination on my first scan. I would feel much more confident in the progress of things.