Calling all limbo-landers limbo check in 11/29/2011

[minivanmama]

Hi limbo Island!! It's time to limbo!! The sun is out and the water is great. 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 had a good Thanksgiving. I hope everyone is feeling better this week.

Are there any doctor apts this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Remember if you need to scream to go to the middle of the island and remember that you never scream alone.

In island news - Y'all had a good thread going so that is why i started this one late. If you missed something just go back and take a look. Y'all are great and i am so thankful to have y'all on the island.

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

Well i am off to bed. Good night limbo island and sweet dreams. Lots of (((hugs))) everyone and i will check back in soon.

[mommyRN]

So far this week...

This week I "bit the bullet" and went to see my GP to discuss all that's happened with my various tests, appts, etc. to see if she could lump it all together and send me in the right direction (last week I had decided to grin and bare it and decided I was done with docs and tests for awhile). When I arrived she was in a delivery going to C-section so I opted to see her PA. Very nice young lady, I felt like she actually listened to me.

More blood tests, a 2nd opinion with a neuro in January, exactly what I did not want to do. She did say I hadn't had a B12 level drawn so I am definitely interested in those results (wouldn't that be a quick fix?). She's going to recheck my thyroid levels (which have always been low-normal) and Vit D (which was really low last year). Because my MRI's are "normal" she's thinking maybe something else autoimmune so she ordered blood for that too. Also because I'm on Lipitor she's drawing liver enzymes (apparently no one else had done that either). She's holding off on further testing so the new neuro can decide what else to do.

She did mention a trip to Mayo if they can't figure this out because she said it all "looks and sounds like MS but the normal MRI is puzzling". Suppose I will just let it all be until January when I see the new neuro, hope no new symptoms start, and ignore what is currently going on. Wish you all a good week!

***Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.***

[maitrimama]

Hello All - I can't believe it is already Wednesday and I hope everyone has survived the week thus far without too many bumps and bruises.

MVM - thank you for keeping this limbo land going and making sure we all have a place to congregate. I myself tend to be a wanderer and a rebel but I also watch for you starting up the new thread.

MommyRN - I truly feel that how we all face and deal with what is ahead of us is a personal matter. It sounds to me that you are following some sort of internal intuitive path and I have faith that you will know what is right for you.

I have only been hanging around her for ~2 months and I set some clear parameters from the get go and I can see the end in sight. I had the last of my tests done, VEP and LP, and I have a follow up with my Neuro in 2 weeks. My VEP for my left eye is high but I don't know the number value. I just had the LP done on Tuesday so no results yet. No headache from the LP but the LP itself was terrible, having degenerative disc disease that effects the lumbar region didn't make it easy, oh well.

I don't expect a Dx I just want to know what is wrong with my eyes, they are subtly getting worse and worse. My Neuro said it was his goal to give me some peace of mind and that is fine by me.

Prayers for All, Big and Small

[minivanmama]

MommyRN - Good to see you. I am glad that you went to see your GP. I hope the blood work will show you some answers.

It would be great if it was just your B-12. I hope the new neuro will help find answers and you don't have to go to mayo.

Let us know when you get the tests back. Have a good week and (((hugs)))


It has been a busy day today. We put up the tree and the kids had a lot of homework today. So i am ready for bed.

I am going to have to call the rheumy back. My leg is still in pain. I will be glad when we get down to what is going on with my leg.

Well off to bed. Good night limbo island and sweet dreams. Lots of (((hugs))) everyone.

[ChristieAnn67]

When I arrived she was in a delivery going to C-section so I opted to see her PA. Very nice young lady, I felt like she actually listened to me.

More blood tests, a 2nd opinion with a neuro in January, exactly what I did not want to do. She did say I hadn't had a B12 level drawn so I am definitely interested in those results (wouldn't that be a quick fix?). She's going to recheck my thyroid levels (which have always been low-normal) and Vit D (which was really low last year). Because my MRI's are "normal" she's thinking maybe something else autoimmune so she ordered blood for that too. Also because I'm on Lipitor she's drawing liver enzymes (apparently no one else had done that either). She's holding off on further testing so the new neuro can decide what else to do.

She did mention a trip to Mayo if they can't figure this out because she said it all "looks and sounds like MS but the normal MRI is puzzling". Suppose I will just let it all be until January when I see the new neuro, hope no new symptoms start, and ignore what is currently going on. Wish you all a good week!

Sometimes a different opinion of things leads you to new approach and perspective, which can be enlightening. HOpe the blood tests go well...and hope you get some answers or at least headed in the right direction towards answers.

There are definately times that I need to just forget about symptoms and diagnoses and just live my life...Hope new symptoms don't start....Just have a good week.

[ChristieAnn67]

Hello fellow limboers...

This week for me had its ups and downs. First of all, at the beginning of the week, I had a med reaction. I had been dealing with some depression issues, so I talked to my PCP and he mentioned going back on lexapro. I was going to talk to my neurologist 1st, but they had called and rescheduled my appt, and I felt like I needed something so I went on the lexapro.

OMG< big mistake!! I had been on it in the past and did well, so thought it would be good again, however when I was on it before, I wasn't on nortriptyline!! Wow..I literally couldn't think at all and when I laid in bed, my whole body felt like it was trembling inside, worse then the usual buzzing feelings I have in my right leg. I had to leave work. My neuro and pharm said there is a small chance that lexapro and nortriptyline can react, so went off and things got better.

I had a 4 day weekend for thanksgiving, which helped me IMMENSELY!! I got to sleep in everyday, and got to rest everyday, so by sunday I felt so good. I had more energy than I have had in a LONG time. My first day back to work was great, felt good, happy and energetic. unfortunately my energy level has kind of gone away now, and I'm back to my usual fatigue. Oh well, it was nice while it lasted.

I was suposed to see my neuro on tuesday, but apparently when I had to reschedule my last appt, I got the times messed up. I arrived at 9am, but apparently my appt was at 830, so they couldn't see me. I'm not sure what happened there, but oh well....I will call and reschedule a new appt. I was too upset to do it then as I walked out of the office to make the hour drive back home.

Hope you all are having a good week.

[Greg]

Ok had my mri on monday and the follow up apt today. Glad to report that I do have a brain and have pictures to prove it.

So anyway the brain mri was normal yeah but still no answers booo.

Good thing though my doctor finaly threw in the towel and said that he has no idea what is wrong and gave me a referal to barrows nuerological group in phx....yeah! So on friday I get to call them and try to set up an apt. I might get anxious and do it tomarrow instead. Unfortunately another member posted that they have a 6 month wait. Man I hope I don't have to wait that long to see a nuero. Maybe I could switch to mayo if barrows is that far out. But anyhow I am so happy that I got the referal to barrows. They have such a reputation here in az of being the best I have hope that I might get my answers. Worth the hour and a half drive to phx

God bless and stay strong

[derrie]

This week, I feel like a freak.

The Lyrica is helping somewhat with the pain, but it seems to have changed the nature of the pain. It's hard to explain. Oh well. It is causing me to jerk a lot, which is obnoxious. Also, my balance is shot. I walk like a drunk. I have trouble waking up in the morning -- like completely sleeping through an alarm -- which was never a problem for me before. And I seem to have a crash every day around 1pm, where I feel overwhelmingly fatigued. I usually have to close the door to my office and put my head on my desk for 15 minutes. Unfortunately, yesterday, we were interviewing a candidate for a job around my crash time and my head was bobbing up and down as I struggled to stay alert during the interview. My co-workers, after the interview, asked if I was OK. Embarrassing.

My abdomen is distended, giving me a little pot belly. It's not fat (which I was concerned about because Lyrica can cause weight gain), but just hard and round. Also, I can't pee properly. I sit on the toilet and it takes a good 20 seconds to get any sort of flow going, and then it stops and starts and stops and starts. Blah.

Plus, I still have the stupid rash that makes me look like I have a blotchy sunburn or I'm perpetually embarrassed (which is getting to be sort of true). At this point, I have no idea which symptoms are from the Lyrica and which symptoms are symptoms. Luckily, I have two appointments next week -- PCP (for unrelated reasons) and rheumatologist -- but this is ridiculous. I generally feel pretty OK, but just with a bunch of relatively mild symptoms that have collectively made me sort of a freak.

So it goes.

---

Greg-- glad you got a referral! Let us know when you get in and how it goes.

ChristieAnn-- Ugh, I am sorry you had such a rough week, especially with weird drug reactions and missing an appointment! I hope you're able to schedule a new one soon.

MVM-- Super uuuuggggh on the leg pain. Leg pain is my arch nemesis. Let us know what the rheumatologist says!

maitrimama-- Sorry you had the dreaded LP headache. I got the supposedly "mild" version of it, and it sucked. Let us know when you get the LP results. I assume they're doing a nice, wide range of tests on the CSF?

mommyRN-- I'm curious how your test results turn out (I'm always curious about test results). Do let us know. And if you end up going to Mayo, maybe I'll see you there-- my neurologist keeps throwing out that I should go to Mayo, then he decides I need just one more test or consult here...

Anyway, to sum up-- be well, all!

[jumpinjiminy]

Gosh, a busy week for everyone it sounds. Wish I could reply to all individually but will have to let Derrie's post above speak for me too.

I guess the neuro follow-up is on for next week as they have called to confirm. I'm having a lot of trepidation over the whole thing. It's a long drive and I don't want to go in there with black spot in one eye, episodes of hypoventilation, disappearing knee reflexes, partial loss of arm function after an hour of leaf blowing and hear that this is all migraines again. It seems to be the theme. It doesn't add up, imho, and so it feels like a brush off. And I worry that there's a brainstem issue going on because my episodes come along with irregular heart rhythms, decreased breathing rate (half of normal and then back to normal again), and that sleep study showing a complete lack of REM (not normal and may be brainstem related as well).

Anyway, the blurring vision is coming back, along with the diaphragm spasms, all topped off with some episodes of hypoventilation. It's too bad the all-seeing MRI can't tell us what's going on in there because the blood tests sure don't.

But it's not all bad stuff. I'm having some real success with the Ambien and Provigil getting regular sleep hours for the first time in decades. The big success is keeping to a normal schedule - for the most part. There is still the balance to consider - how much pushes me beyond too much requiring a day off in the middle. But overall, it's a huge improvement and gives me hope I might have success in a regular day job again.

PT is going well and we've finally gotten to doing some endurance work. I actually got a little endorphin rush today.

[derrie]

Huh. Well, my face rash is clearly photosensitive. It was a sunny day today, and going out just to walk a couple blocks to the banke and back left me with a freakishly red nose and cheeks. The kicker is that on my nose where the pads of my glasses rest are two pale white circles where those areas were protected from the sun. Out in the sun for 10 minutes tops, and not all of it actually in direct sun, and I'm tomato-red. Blah.

Anyone have experience with rosacea? I know there's the malar rash (of lupus fame), too, but I know rosacea is more common. Is rosacea prone to such photosensitivity?

[jumpinjiminy]

Derrie, Medscape says rosaceae is typically not photosensitive. You have a big clue. Good for you paying attention to what triggers this rash. Are you sensitive to sulfa drugs too?

http://emedicine.medscape.com/articl...overview#a0104

Medscape has an in depth description on rosacea.

[derrie]

Hey, JJ-- Thanks for that link! Very informative site. I don't know if I'm sensitive to sulfa drugs, since I've never taken one. What's the connection there?

Luckily, today I managed to get a photo of my gorgeous rash when I came back from my walk, so I have something to show the rheumatologist next week if it's a cloudy day when I see him. The rash is always there, but it's fainter -- more pinkish -- after I'm out of the sun for a bit, So I figured documentation might help.

[jumpinjiminy]

People with lupus sometimes have flares triggered by taking sulfa drugs. I don't know that they really know why, but that it's a common reaction by people with lupus. You've never taken a sulfa antibiotic? There are a lot of sulfa based drugs - some derivatives that aren't antibiotics like topomax for migraines.

[derrie]

I looked at the list of sulfa drugs on Wikipedia. I don't recall ever taking any of those drugs, and if I did, it was likely when I was a child. I've been joyously healthy for my adulthood, barring a slight detour for Hashimoto's thyroiditis, which is well-managed by Synthroid. I'm not enthusiastic about leaving the Maybe-MS Train for the Maybe-Lupus Train, as I was rather planning to get off at the station and go my merry way. I have had two negative ANAs; I wonder if the rheumatologist will run it again. Either way, I think this rash is going to make the rheumatologist more interested in this consult, eh?

[Strhuntrss]

New to symptoms

Does anyone know about why I can't seem to retain things. Someone will tell me something and I have no clue what they just said or it will come back to me in a few minutes. It's getting more frequent. I really hate to carry on a conversation with someone other than family for fear of being embarassed. My optic neuritis has stayed the same since April. Swelling has gone down but the blob shadow and faded color has remained unchanged. I'm losing my balance alot and my legs are getting worse. I feel like I have to move them all the time. Especially at night. ANy thoughts would be greatly appreciated. LOST IN LIMBO