Calling all limbo-landers limbo check in 11/1/2011

[rsb]

Derrie- my rheumatologist always says that steroids are a litmus test for patients; if your symptoms dramatically improve on steroids, they're caused by inflammation. Now, in some circumstances, that isn't terribly helpful to know (like for me, it doesn't differentiate between whether my neuro sx are from my existing lupus or from MS), but it could probably be really useful for your neuro (and obviously very helpful to you to have such a dramatic reduction in symptoms!).

[lynnepynne]

Asiel1 says:

Ha.. I hear ya. I had a week long bout of it this summer. I never knew what it was before. On day four I finally figured out after reading this board. The suicide headache is a good definition. I have no meds for it. I just go to bed and rock back and forth while holding my jaw.

That reminds me.. I need to talk to doc about this tomorrow. It is one of the worst symptoms in my opinion.

In years past, I thought it was a toothache. There were times I wanted to get all 1880's and pull out all of my teeth on the left side with a pair of pliers with a bottle of jack daniels for sedation. Luckily, I re--thought that and went to the dentist.-- being vain and all.


Who said pretty much the same thing the neuro says... there's nothing wrong...

Now give me your copay and go home.

take care,
LBJ

you make me crack up!!

But that TN stuff is wicked, no? And I have begun to realize (as each episode gets worse) that there are really scary levels of pain out there, possibly in my future and much worse that I have experienced thus far. Holy moly. Have mercy is all I can say.

Derrie: yay, so happy for you!!! I know I was thrilled when steroids (low dose +taper administered by my rheumatologist) kicked in. And not just because I felt better on them. He said the same thing that rsb mentioned: "well, now we know it's not in your head. It's due to inflammation")

Warriormomma23: congrats *sigh* freshly married. How wonderful.

Minivanmama: thanks for your kind words.

[Mama_Darwin]

Christie, i assume that you reacted, or were sensitive to, the contrast medium. i hope you feel better soon!

Lynne, try to keep your chin up, and do something nice for yourself this week.

derri, sounds like the Medrol might be your knight in shining armor. Although it would be nice to have a name for your "Wonky Nerve Syndrome," if the corticosteriod is making it better, i'm not sure how much it matters why. Here's to feeling better!

[valeriem2220]

Just have to say. The first time I saw "Wonky Nervous System" I have been using that.
I am diagnosed now....and still I use that...it made me laugh....lol

[Mama_Darwin]

Lori, the surprise call from your PCP's nurse sounds wonderful. It's good to know that the office really does care!

warriormoma, congratulations on married life! i hope your visit with the new neuro tomorrow goes well.

As for me, i'm riding the Gabapentin side-effect tide. Today was my first full day of work while on under its influence (although i've had a bunch of appointments and training sessions, i worked only a half day Tuesday and not at all Friday or Monday). The headaches are subsiding a bit, but i still feel REALLY fuzzy, and i'm not sure i was really fit to work. Okay, i definitely wasn't. But what am i gonna do? So now i'm trying to figure out whether i want to continue taking it with the hopes the side effects will go away (but live, at least temporarily, in an unsafe fog), or go back to living with tingling and a constantly higher level of nerve pain.

[leahchris]

Not been here in a while

Hi all. I haven't been here in a while, not since the heart attack caused by my headache meds that I took for the headaches caused by my diabetes meds. I am really ANTI-meds right now. I stopped taking all my meds and am doind okay, but not great.

In the MS department, I have my follow up with my neuro on the 15th. I was going to cancel, but have been having odd vision issues again. I have trouble hitting the right key on the debit card terminals and on my computer. I hit the key to the left most of the time, unless I am very careful.

My problem is that my diabetes docs say it is not diabetes related and my neuro says my symptoms must be caused by the diabetes, as I have only one lesion in the brain. 20 years ago I lived on steroids and 10 years ago they started me on Avonex. Now, they have their doubts about my MS!

My neuro moved his office and lost all my records, so is starting all over. I have been stable and don't want to have to have an exacerbation to make get a diagnosis.

Sorry for the rant. On the bright side, I have begun aerobics classes again and have lost almost 20 pounds since stopping all meds. I look good, just want to feel as good as I look.

Any suggestions on the eye issues? Is it vision or is it a hand-eye coordination thing? OH, I have also developed Reynaud's Syndrome in my hands, but the neuro says my blood work did not indicate an autoimmune disease.

I hate LIMBO!

Thanks for letting me vent.
Leah

[derrie]

Thanks all for the info on steroids.

Mama Darwin-- Yeah, I'm very happy about the steroids working, but if the symptoms come back when I finish this round of steroids, I definitely want a name for my wonky nerve syndrome. Because long term steroid use is not what I want! But we'll see; I'm cautiously optimistic!

Leahchris-- Welcome back, and congrats on doing what you feel is best for your body (20 lbs is great weight loss, congrats!). And don't worry about venting about limbo. It's sort of a theme here.

---

In other news, my neurologist's office called today and said that he had an opening tomorrow, and instead of waiting a few weeks (until my next scheduled appointment), he wanted me to come in tomorrow.

His nurse told me last week that all my LP results were normal, and the steroids are working like a charm to kill my symptoms. So why would they want me to come in so soon? Way to make me feel super paranoid, neurologist's office.

Eep.

[maitrimama]

Tantrum

I feel like I want to have a good old fashioned, foot stomping, shoe throwing, door slamming tantrum...but I won't because it would probably make me feel worse. I was really starting to feel better last than Sunday symptoms came back and then some. I took a sleeping pill so I could escape all this twitchy, twingy, sharp pain, deep muscle ache nonsense, nevermind the fact that my cranial V5 is on the fritz again.

How do you guys do it?

[lynnepynne]

Maitrimama,
I dont "do it". I just hang on for the ride, fall apart at intervals and pick myself up when I land in the dust.
I have a demanding job and am a single mom to three. I do it the very same way you do: with lots of tears and anger and fears and neurotically hanging out in MSWorld and googling like a madperson looking for solutions and/or a diagnosis. And besides that I try to laugh and be kind to myself and especially to my family because they are my reason for not falling into an endless fit of self pity and depression.
In short
I do it without elegance or grace.
But I do "do it" however way possible.
So maitrimama, I think that officially makes us all heros.

Hope you feel better soon

Mama_Darwin, I am also on Gabapentin for AtypicalTN and going back to work today. Not really ready. I feel like crap (like I am getting the flu or something) and like I moving though a fog. My balance is off and my reactions are slow. Plus I have some other weird twitchy stuff going on. And unfortunately my head/face-ache is still breaking through (kinda like background noise with punctuations of pain) But who knows how long it will last and I gotta go back!

Can you tell me your dose? How long you've been taking. (just out of interest) I am 3x a day 300mg.

Hope things get better for you!

[maitrimama]

Good Morning Lovely Ladies (I think we may scared the guys away)

Lynne - Thx for the kind words, they have helped me reorient this morning and dust off my journal and start keeping a gratitude list again. Self pity does not serve me well. Though I am not religious I am spiritual and adding in some prayer, meditation or simple contemplation improves any day.

Simple acts of kindness are to be my motivation. Little things quietly done during the day, expecting nothing (not even a thank you) in return. Simple things like holding a door, putting a quarter in an expired parking meter, letting someone into a line of traffic, (Lynne) letting a busy mom go ahead of you in line at the grocery store and my favorite...at the Dunkin Donuts drivethrough - pay for the coffee for the person behind you in line! I need to keep the focus off myself and you all are helping sooo much.

I am not alone, and there are people out there that get what I am saying. This is hard to delicately put into words but I will try, because I know someone of you know what I am trying to say...I am afraid that I turn into someone who takes any and all symptoms that the read or hear about. Because so many neurological issues (MS and Lyme's especially) have vague, mysterious systems it is easy to do.

Lynne - You are a warrior queen, hugs to your little ones. Though their main residence is with my ex, my teenage daughters are my world.

Derrie - everytime I see your Avatar (small on my iPhone with my wonky eyes) I see a magical faerie!

[photomama]

Warriormomma23- congrats on your new family!

I am here and listening to everyone. My brain isn't working properly to respond. My youngest has been sick the last few days so I'm not on full capacity (well, my full capacity). Just know I'm thinking of everyone.

maitrimama- good for you for focusing on the good. Really, none of us "do it". We all have good days and bad. Fall down seven times, get back up eight, you know? And know we are not alone. I tend to ignore my symptoms until they scream at me... not a good thing either.

There is a balance. While I like to be educated, I also don't want to be tainted by my education (poor short term memory helps, lol). I think this is where developing a good way to relieve stress is best (like yoga, meditation, prayer, music, exercise, whatever is your best stress reliever) and using it religiously. I find it can help get rid of those "extra" symptoms brought on by stress or depression or anxiety. I am not an anxious person, but dealing with an unknown for any length of time can bring out these feelings.

[derrie]

Derrie - everytime I see your Avatar (small on my iPhone with my wonky eyes) I see a magical faerie!

I like that! It's actually a picture of Lower Falls in Yellowstone National Park-- one of my favorite places near where I live. It is a magical place, indeed.

[stalo]

I have been listening to everyone in limbo land, even tho I haven't responded very much. You are all so brave and resilient, even tho you probably don't think you are! We plaster smiles on our faces for our family & co-workers even though we are in pain, tingling, zinging, tripping, dropping things, weak, tired and "wonky". We are super people, as in super heros and we really should never forget it! I sincerely believe that there is no one who knows what it feels like to be in limbo unless they've been there. I know there are some who wish they never knew...ignorance was bliss for them. But I feel absolutely lost and out of control not knowing what is causing my body to react this way. It is something I think about every single day, and I know I would think about MS or whatever every day also, but at least knowing & not wondering would be better.

I went through cognitive testing yesterday - 3.5 hours! I was very tired afterward & was glad I took the afternoon off to veg on the couch with kids at school & hubby at work. I get the results when I go see my neuro on the 15th. I don't have another MRI til Jan.

Interesting what was said about steroids. I was on my first taper this summer after a severe bought of vertigo. I felt AWESOME on steroids! All my burning pain went away, I felt stronger & more balanced...I was disappointed when I went off that all the bad stuff came back. My neuro never said that was significant but I did see her write it in my chart, so...

Take good care, may God bless us with peace while we wait for our answers!

[minivanmama]

Lorie Lee - Good to see you. Thank you for the birthday wish. You have a great PCP. That is a big help when you know you have a doctor that wants answers.

I hope you will get to feeling better soon. Lots of (((hugs)))

mama Darwin - Good to see you. Thank you for the birthday wish. I hope the gabapentin side-effect will stop soon.

I am on gabapentin and it took me some time to get use to it. It did make me feel fuzzy and in a fog. It may need some more time and the dose may have to be played with. I have now been on it a year and i don't feel that way anymore.

I hope it all gets worked out soon. Lots of (((hugs)))

warriormomma23 - Good to see you back. You have been busy and blssed. Congrats on your marriage and your new family.

I hope your apt went well and i am glad that your DH went with you. Let us know how it went when you get the time. i hope your fatigue will get better soon.

Lots of (((hugs)))


derrie - Thank you for the bithday wish. I hope your apt went well and you will let us know how it went when you can.

I feel better when i am have been on steroids. I am gald that you are feeling better and they are working for you. That is good news and i hope you will keep feeling better.

Lots of (((hugs)))

rbs- (((hugs))) and hope you are doing well.

lynnepynne - (((hugs)))

Valeriem2220 - (((hugs)))

leahchris - Good to see you back. Wow you lost 20lbs that is great. I am so proud of you. I wish i could help with the eyes. I would call your doctor and ask or bring it up at your next apt.

I have reynauds also so you are not alone. I hope you will get some answers at your next apt. I am sorry that you are starting over and getting the run around with your doctors. I hate that.

I hope you will get to feeling better and that you will keep checking in. This is a great place to vent. Lots of (((hugs)))

maitrimama - You can vent yell and scream here. We all have to do that from time to time. I know for me to get throught it all.

I cry,scream and yell. Then i pull myself back together and look at all the blessings in my life and look at the good. I know it helps me to know that i am not alone and i always have the island and y'all to help me through.

Keep your eyes on the good and know we are always here. (((hugs)))


Photomama (((hugs)))

stalo - Good to see you. Glad that your cog test is over. It is a long test and wears you out. I am glad that you got to rest after. I hope you will get good news at your next apt.

I hope you are doing good and have a blessed week.(((hugs)))


I had a good birthday. My DH took the day off and we went to lunch.(all the kids were in school and we went with out them ) Then out to dinner with the family and my best friend.

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

[derrie]

my neurologist seems more concerned than I was

Had my appointment today. Yay. I do so like my neurologist. But I just figured we'd say, hey, steroids are working OK, see you later. Instead, he did another pretty thorough exam, re-took my symptom history, and then disappeared to call some other doctors.

When he came back, he told me he was almost certain that this problem is somewhere in my spine. He ordered another 15-tubes-of-blood-worth of blood tests (when I went to the lab, the phlebotomist greeted me with, "You again? More weird tests I've never heard of?"). Then he told me that if these are inconclusive, I'm going to Mayo for tests we just don't have access to in my rural area (a somatosensory evoked potential-- what is THAT?!).

I'm on the fourth day of my Medrol dosepak, and my symptoms seem to be returning as the dose gets smaller. I had a whole two days of feeling good. He's going to try a higher dose next week if the symptoms return, full-force.

So, I'm getting a little freaked out. I mean, Mayo? Seriously? He thinks that's necessary? And how expensive would that be? And would they be able to figure anything out? This has gotten old. I'm sick of being a medical mystery. I don't understand how there can be something so clearly and specifically wrong with my body (my symptoms are very specific and definable, and are consistent), but no test can say what the heck is wrong.

I was prepared to take a diagnostic break after the normal LP, but now with steroids (sort of) working and my doctor pushing further diagnostics, I'm a little freaked out.