Calling all limbo-landers limbo check in 1/10/2012

[minivanmama]

Good Evening limbo island! It's time to limbo! The sun is out and it is a great time to come visit 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.

How are you doing/feeling this week? I hope everyone is feeling some better and not to busy.

Are there any doctor apts this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Any one who needs to scream?

In island news - Welcome to all our new limbo islanders.

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


Boy has things been busy here. I am feeling ok just my leg pain and some fatigue. I did go and see my GP and and his NP.

They want me to see a orthopedist about my leg. So i am going to call and i hope i don't have to wait too long to get in. I hope this will get some answers as to what is causeing the pain.

Well i am off. I will check back in soon. Lots of (((hugs))) everyone.

[Lori Lee]

Hi MVM and fellow limbolanders,

MVM, sorry for your fatigue and leg pain. I hope you can get some answers that bring relief.

I am right there with you with the fatigue. I spent half of last week in the bed feeling like a wet noodle. Then rebounded on Saturday. Now I feel limp again. Looking forward to my appointment with the MS dr on the 23rd.

One thing wearing on me are the constant bladder issues. I had the sling surgery this summer which helped a tiny bit. I was told it would fix half my problem but I don't think it helped much at all. My leakage at night is much more constant now. Argh!!!

Anyway, big Hugs to all.
Warmly,
Lori

[minivanmama]

Hi Lori Lee - Good to see you. Thank you for thinking of me. I hope your fatigue and bladder get better soon.

I have bladder problems also and they can be a pain to deal with. When you go see the neuro talk to them about it and see what they have to say.

I am glad that you don't to wait to long to go and see the neuro. I hope that you will get some answers. rest when you can and get to feeling better.

Lots of (((hugs)))


Well good night limbo island and sweet dreams. Lots of (((hugs))) everyone.

[mommyRN]

Good morning MVM, Lori Lee, and all my other Limbo Land friends,

I have my neuro 2nd opinion tomorrow and am suddenly getting nervous and I'm not sure why. I'm a little afraid he will ask me questions that I can't answer (like timeframes, when all this started- I didn't keep track of anything and am having a hard time putting all the pieces together at this point).

But more than that I'm afraid he won't ask the right questions and I won't give him information that he needs to know and I will remain untreated and in limbo. Any recommendations how to approach this appointment or how I should be prepared?

My first neuro was only interested in my migraine history (and she was a new grad, so maybe she wasn't sure what to do with me). Or maybe I wasn't as forthcoming with my complaints as I should have been.

She did a quick (5 min) neuro check at the first appt. I was not impressed. But now, many months later, a lot of those original symptoms have resolved. Help!

[MarkLavelle]

But more than that I'm afraid he won't ask the right questions and I won't give him information that he needs to know and I will remain untreated and in limbo. Any recommendations how to approach this appointment or how I should be prepared?

Bring someone with you. Preferably someone you've known well for a long time (spouse, parent, sibling).

Get together with them beforehand and reconstruct (and write down) every symptom & weird sensation the two of you can remember.

While you're at it, write down your questions, too...

Best of luck,
Mark

[Lori Lee]

Hi MommyRN,

I totally agree bring someone with you and write down anything you hope to discuss before you go. My best friend is a RN and told me to do this many times but I ignored her and always left appointments frustrated as I would forget what I wanted to talk about. My brain would turn to mush.

My husband goes with me to all of my MS specialist appointments. I would have forgotten to tell her about the episode of TN I had but he spoke up and told her. She was very interested in making sure we didn't let that go. I have an appt on the 23rd and I have several things I want to discuss and I plan to write it down.

When my Husband is with me, I can piece together a whole lot more of what is discussed as he retains a portion and I retain a portion and we bring it together and I have way more than I would have if it were only me .

Also something to think about it, as you piece symptoms together right down and record a history. So in the future you will have it to reference. I give each new Dr a copy of the history and recent symptom diary. At first I was extremely detailed now I only list symptoms that are new or persistent.

I hope your appointment goes well.

Blessings,
Lori

[mommyRN]

Ugh, that's part of the problem. Husband works tomorrow and I had to take the appointment I was given and have waited a couple of months already. Aside from my hubby, I have not shared these issues with others, family or friends. And to be honest, I only started sharing this info with him when I ended up in the ER needing an MRI- then he knew something was wrong.

I have some things written down, but I don't want to come off as a complainer or attention seeker (or especially crazy, some my symptoms have been weird).

I don't want more testing, I don't even want a diagnosis, I just want to feel better.

[MarkLavelle]

I have some things written down, but I don't want to come off as a complainer or attention seeker (or especially crazy, some my symptoms have been weird).

However weird/crazy/whiny you think your symptoms are, I guarantee the neuro has heard stuff even more extreme! You wouldn't want to deny the doc an important clue just because you're embarrassed, would you?

It's a shame your hub can't go with you, but maybe the two of you could write more down tonight.

Good luck,
Mark

[Lori Lee]

((Hugs MommyRN)) Tomorrow will work out. Your husband doesn't have to be there but I do find I am taken way more seriously when mine is with me. Not sure why!!! My GP I can go to by myself and he listens and advocates for me. I really got the run around with an old rheumy and that is why my husband insists on going to the MS apptointments.

Decide what you want to discuss write it down and hang onto it during your appointment just to keep you on track. Praying for you. Lori

[jsage]

Hi everyone,

I'm finally able to relax a bit after our big system project at work; just "mop-up operations" now as I prepare for the next milestones. Not as big as the one just completed, thankfully. I've worked non-stop every day since the Friday before Christmas and I am beat

minivanmama, sorry about your pain. Does it get better or worse in the cold? My sx seem to diminish in cold weather. In any case I hope it's not wearing you out too much!

Lori Lee, glad you're seeing an MS specialist. The difference was night and day for me. Even his staff and associates seem more on the ball than at my "regular" neuro's office.

mommyRN, I hope your appointment goes well. Don't feel about about writing things down and bringing a list of questions. I've done it each time and just told the doc my memory is a bit fuzzy and I don't want to forget anything important. I do try to keep my question list short though - like you say I don't want to seem overly dramatic.

derrie - thanks for checking in last week, sorry your leg pain continues. I hope you get answers soon.

I had an EMG and nerve conduction test yesterday. Greg, they were uncomfortable but not painful, so nothing extra from my wife for being such a strong man I did manage an extra cookie after dinner last night - because "I got a shot" from the doctor

Both tests were relatively normal according the technician and the doctor who did the EMG test. I have some mild compression of the median nerve in both hands, but it's not anything I've ever noticed. The doc asked me if my hands often fall asleep (for real, not the paresthesias) when I sit or lay down. Surprisingly for me, yes they do!

Speaking of the EMG doctor, it turns out he's a heavyweight himself. He's the head of Neurology at Scripps and a professor of neuromuscular disease at UCSD, just down the road. He performed the EMG, then he did another physical exam and a brief interview to understand my symptoms. Then he invited me over to my office and we went over my previous lab work.

He found an elevated B6/pyridoxine result in my last blood test, and explained that it can cause peripheral neuropathies as well as permanent damage to my nerves. He told me to set up the follow-up visit with the MS specialist, then sent me down to the lab for another blood draw to confirm the level. This time the lab tech put the blood in a special light-proof vial.

So I see the MS specialist again on the 25th. So far a lot of things have been ruled out, including MS for the moment. Since I had no lesions in October and I don't seem to have any motor deficits or muscular weakness the docs feel pretty confident about that. In any case, I do feel comfortable with these specialists, and I appreciate that they take the time to explain their conclusions to me.

I hope everyone has a good week, take care!
- john

[derrie]

Hey all. Still alive. Having trouble with the medication I am on for the pain, Lyrica. It's given me myoclonus all over my body, and the sporadic jerking is driving me nuts. I am considering weaning off of it. Otherwise, still in pain, still haven't heard from Mayo regarding the referral (my doctor said he was going to do that weeks ago... did he forget?).

jsage, please post when you find out about your B6 levels. I'm curious. About a year ago, when my paresthesias started, I had a very high B6 level, but I've been tested three times since then, and all levels were normal. So they think it was a lab error, but for a while, I was tentatively diagnosed with B6 toxicity. I'm curious if your next test will be the same.

Anyway, MVM, Lori Lee, mommyRN, and everyone please know I'm sending good thoughts your way. I've just been busy at work and just plain too exhausted to check in here much. I'm just sort of down in the dumps. And random surprise myoclonic jerks makes typing, well, eventful.

Be well, all!

[jsage]

my mind is blown ...

jsage, please post when you find out about your B6 levels. I'm curious. About a year ago, when my paresthesias started, I had a very high B6 level, but I've been tested three times since then, and all levels were normal. So they think it was a lab error, but for a while, I was tentatively diagnosed with B6 toxicity. I'm curious if your next test will be the same.

tl;dr version: I may have been poisoning myself with vitamin supplements.

derrie, I received a call today from the neurology dept at Scripps. The nurse told me that my B6 blood level was 195 - elevated in her words but she wasn't sure what normal is supposed to be. She said the neurologist recommended that I stop taking any vitamin supplements as well as any "fortified" foods. I am to follow up with my MS specialist as well as see the neurologist in two - three months.

This sent me scampering across the Internet trying to find reliable and credible information about normal B6 levels. What I've found is freaking me out a bit. Normal seems to be 25 - 30, but it depends on which lab test was done. I'm going to request both sets of test results be sent to me on Monday so that I can understand what level is normal.

In any case, peripheral and sensory neuropathies result from B6 toxicity, especially in the case of pyridoxine - a synthetic B6. These neuropathies can become permanent. My Sharp primary care doc put me on multivitamin supplements at the beginning of August due to my stress and fatigue levels. This is the same doc who would order no more tests back in November. Now I'm thinking about what might have happened if I'd waited until April to follow up with him and the Sharp neuro.

I also found some information on Johns Hopkins website suggesting that people who are "pre-diabetic" or diabetic can be susceptible to increased B6 levels, resulting in "diffuse neuropathies" all over the body. My parents are both diabetic, and my symptoms are what drove me to see the primary care doc in July, thinking I was beginning to suffer from the onset of diabetes and wanting to get ahead of it.

At that time it was the tingling and pins-and-needles in my hands and feet, cog & speech problems, fatigue, dizziness and weird semi-fainting spells. The doc did blood panels but did not want to do a blood glucose test because he felt the blood sugar, while over 100 in two tests, was not high enough for concern. He felt I was stressed and fatigued and suggested a multivitamin with a strong B-complex. Because of my previous sub-arachnoid cyst, he sent to the neuro to rule that out. That's how I ended up on the "possible MS" merry-go-round.

I've looked at the labels of both multivitamins that I began taking in August. Recommended RDA for an older man is 1.7mg daily.

The first supplement was Vitaminworld Ultra Man Max. I took two daily for a total of 150mg of B6 from pyridoxine. There were 90 tablets in the bottle, so I took it for 45 days. When that ran out I bought a bottle of Kirkland Performance multivitamins, which have 10mg of B6 (type not specified). I stopped taking it on Wednesday.

September through November correlate with the increase in sensory symptoms - tingling, itching, pins-and-needles, burning and pain all over my body. At this point I hesitate to jump to conclusions, but it doesn't seem unreasonable that B6 supplements played a factor. Of course, there's the original symptoms to figure out.

Wow, typing all this out has calmed me down a bit. Time to go enjoy a glass of wine with my wife.

have a great weekend everyone!
- john

[jumpinjiminy]

Had to leave town for a family emergency. Decided to quit smoking while away and came back pooped and struggling with living with a smoker. I'm annoyed and wiped out. Look out world. I hope a good long sleep through morning will bring my energy back, otherwise, my PT might need to add some weights to the program to help me burn off this fury.

Will catch up later . . .

[inthewoods]

Hi!

I posted a lengthy introduction in the tell us about yourself forum and I've been kind of keeping track of how my quest to get A-taken seriously and B-diagnosed is going.

I'm still experiencing dizziness, a partially numb face, and spending all but the time I am at work in bed, asleep (and the time I am at work exhausted).

But, I have a lot of imaging this week, and I'm hoping it can point us in the right direction. I've only had one MRI, no dye, that didn't find anything. But, my new neuro, who works out of an MS center, ordered tons and tons more imaging. He seems like he genuinely wants to figure out what the heck is wrong with me.

I don't hope to have MS, I don't hope to have anything, but these symptoms are coming from somewhere and I'd like to know where so I can take necessary steps to get better.

Thanks in advance for the welcome and best of luck to everyone.