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

[mommyRN]

Results so far

I received a letter today from the PA I saw Tuesday and so far, most tests are normal. B-12 and folate, Sed Rate and CRP, Cholesterol, CPK (drawn because of the Lipitor) are all "great". For which I am thankful, although I was REALLY hoping to pin my problems on one of the above. However, my T4 is "slightly low" with a normal TSH and my Vitamin D came back low again, despite the fact that until last week I was taking daily Fish Oil w/ D supplements. Apparently there's another lab she is waiting for, my guess would be an ANA or dsDNA (I used to work rheum) and I'm sure those will be normal too. Normal labs, normal MRI, normal CT... Yay I'm NORMAL! But can someone PLEASE tell my body that or tell me what the heck is going on with me?

[jsage]

Hi everyone, I hope that you all enjoyed some time off! I got a lot of extra sleep, so this week I'm doing better than I have been for the last few months

I've been gathering reports, results and digital files to bring to my new (old) primary care doc - I'm eager to see him and start over. I hope to achieve a diagnosis of something, anything. In the meantime I'm going to try to relax.

minivanmama - I'm sorry that your pain continues. Even at the low level I'm having, it does tire me out by the end of the day. I've never been to a rheumatologist, I hope he had some answers for you. Thanks again for hosting this thread - I've learned a lot from it.

mommyRN - The visit with your doc's PA sounds hopeful. Let's hope her ideas gain some traction with your doctor - it's nice when a health care professional takes the time to listen carefully!

maitrimama - Was that your first LP? I've never had one, but have read that resting for a day afterward minimizes complications and headache. In any case, I'm sorry it aggravated your back pain - that's no fun. I hope that your doc gets some clues from all the test results.

ChristieAnn67 - Wow, sorry to hear about your reaction to Lexapro! One of it's rarer side-effects is an "atypical jitteriness" - perhaps that's what you experienced. I hope your next neuro appointment helps you get some answers.

Greg - Glad the MRI found something inside your skull - it's always a relief to find that you're equipped for thinking Was the MRI just cranial or did it also include your cervical spine? In any case, make sure to bring the actual file / film to whichever clinic you end up visiting so the neuro can see it with his own eyes. The radiologist who reviewed my MRI eight weeks ago missed a fairly large disc bulge, makes me wonder what else he missed!

Derrie - I'm sorry that you're having such a rough time. I don't get that tired at work, but I struggle to focus and plan. I hope your appointments next week go well!

jumpinjiminy - I'm glad that good sleep is helping you. Do you think someone can give you a ride to your appointment next week? I've never had any rough symptoms while driving, but I think it would freak me out a bit. Well, I hope your neuro can figure out what to do next. Take care!

Strhuntrss - I forget things all the time, even immediately. It makes it hard to get things done and work and at home, and it seems to have gotten worse in the last year. Plus I drop things that shouldn't be dropped What's the next step for your diagnosis, or does your doc want to "wait and see" what your symptoms do?

[derrie]

I received a letter today from the PA I saw Tuesday and so far, most tests are normal. B-12 and folate, Sed Rate and CRP, Cholesterol, CPK (drawn because of the Lipitor) are all "great". For which I am thankful, although I was REALLY hoping to pin my problems on one of the above. However, my T4 is "slightly low" with a normal TSH and my Vitamin D came back low again, despite the fact that until last week I was taking daily Fish Oil w/ D supplements. Apparently there's another lab she is waiting for, my guess would be an ANA or dsDNA (I used to work rheum) and I'm sure those will be normal too. Normal labs, normal MRI, normal CT... Yay I'm NORMAL! But can someone PLEASE tell my body that or tell me what the heck is going on with me?

The curse of normal! Don't worry; I have it, too. I have obvious clinical symptoms, but no significant laboratory or imaging findings. The only lab tests that I've had be slightly off were a low-normal ferritin (wasn't anemic; taking iron supplements now to get the ferritin up) and a low C4 (with a low-normal C3, so maybe indicating immune process).

And this is with having had over $4000 worth of blood work done in the last two months.

So, welcome to the club, and be patient. My new philosophy is that if I have a chronic illness, I must be in the early stages, and it will show itself eventually. Indeed, after months of troubling neurological symptoms and a stumped neurologist, I have developed a facial rash that may indicate some sort of autoimmune problem. So, I counsel patience. I try to enjoy life and get through my days with varying degrees of success. If whatever is wrong is something bad, it should show itself eventually and definitively.

[mommyRN]

Derrie,
Abnormal C4 and/or C3 can be indicative of Lupus and Lupus-type diseases, looks like your doctor is on the right track. Best of luck to you! The sooner you have a diagnosis, the sooner you can receive proper treatment. Hang in there! I, in the meantime, will wait for my Neuro appt in January and enjoy the holidays

[Strhuntrss]

Strhuntrss - I forget things all the time, even immediately. It makes it hard to get things done and work and at home, and it seems to have gotten worse in the last year. Plus I drop things that shouldn't be dropped What's the next step for your diagnosis, or does your doc want to "wait and see" what your symptoms do?[/QUOTE]

Hi Jsage,

Neuro is using the "wait and see" approach. He did say if my symptoms get worse or if I have any new symptoms to give him a call. I have an appt in Feb for my six month checkup. I have braces on my teeth (yes, even at 52) and they could not get a clear picture. They didn't get as far as the dye. Dentist said he would take them off and put back on for free. Neuro said to wait. That will be in Dec-2012. My symptoms have increased but I doubt if he can do anything. Im not a big fan of medication. I have learned to live with alot so i am waiting to see if I have to have pills.
This site is full of info for my concerns. I now have many questions for my dr.

[jsage]

Neuro is using the "wait and see" approach.

That's what the first neuro I saw in October said. Unfortunately I'm not able to deal with that, so I'm going to see another neuro. Being an HMO patient, I have to go through the whole primary-care referral process again.

I'm glad your symptoms are manageable. Mine are merely an annoyance at this point, but seem to be escalating. Some days they're just an unwelcome distraction, other days they to interfere with normal activities.

In any case, welcome to the "limbo land" thread. Minivanmama starts a new one each week. I've learned a lot from everyone here.

Enjoy your weekend!
- john

[mrolbiecki]

Hello to you all
Is Limbo Land the place you go when you aren't sure where you fit?? I'm a lil

[derrie]

Yes, mrolbiecki-- you fit here! This thread is generally occupied by people who have not yet received a diagnosis for their conditions or have not yet been definitively diagnosed with MS. Since you have the "it is but it isn't" diagnosis of CIS, you fit right in here. Some of us don't even have a word yet for what is wrong with us, but we all share the experience of having issues that are not yet diagnosed in a way where our treatment path is laid out for us. Thus, the nature of CIS -- which leaves you uncertain and perhaps untreated -- makes you fit right in.

I am sure I speak for everyone when I say that we are sorry you are dealing with this. But welcome! Feel free to chime in, sound off, ask questions, whatever-- it's a lively thread.

[Greg]

Called Barrows yesterday and learned they didnt have the referal yet. Then they told me that they would call me once they had it becuase they have over thirty nueros in various diff specialties, So they want to see what the doc sends then match the patient with the right nuero. Cool so I had doc send reports again and will call monday just to make sure they got them.

[rsb]

I stayed away too long, now I have too many things to say to too many of you and I'll never get through it all!

And already my sick 2 year old is crawling in my lap, lol. Two kids with immune issues and me on immune suppressants- it's kind of neverending here! We all currently are on abx for ear infections.

Anyway, Derrie, sounds like a lupus rash. My situation was like that- I did have a positive ANA, high sed rate and high CRP, plus low CH50 (which I think isn't typical of lupus), and my old rheumy was on the fence. Then on Easter we went outside to take pictures of my kids and in 10 minutes I had a HUGE rash on my face and chest. Pay close attention to how your symptoms are after the rash pops like that- I usually have a small flare in arthritis and blood pressure issues with mine.

I had my neuropsych exam this week. Luckily, my new rollator came, because I had to walk 2 blocks and wouldn't have been able to do it without my rollator! Test took 3.5 hours, and the neuropsychiatrist is very widely published, he specializes in cognitive changes in MS and lupus, and how to differentiate between the two. So hopefully the right person to see me! He did my interview, said the epileptologist's theory about my seizure-like episodes being anxiety was ridiculous, since I don't have any anxiety. He thinks they're either seizures or atypical migraines. I am hoping migraines because I don't want someone reporting me to the DMV.

As for the cognitive stuff, he said I had no atrophy and only small lesions (at least he acknowledged they were there), and that I didn't have an MRI that would suggest acute cognitive issues. But he also said he expected to either find that a) I have normal, age-related changes and I'm hyperaware of them (which I think is BS) or, b) that I have diffuse damage that isn't showing up on MRI yet, but will have typical patterns of deficit for someone with neuropsychiatric/CNS lupus.

I watched the tester and I had some sections (involving number recall) where I got every answer correct. The areas involving working memory, recall and visual spatial relations were horrible- she marked me wrong for all but 1 question on the visual spatial test. They did a word recall test where she read a list to me and I had to repeat the words. I think there were maybe ten items- and I could only remember four or five every time. She asked if I normally wore a hearing aid. But doing anything involving math, I had very high scores. I thought it was weird til I came home and read a paper that my neuropsych wrote- basically, if my performance was how I think it was, I have classic signs of neuropsychiatric lupus cognitive dysfunction.

Not sure how i feel about it yet, but I'm thinking it would be beneficial in my quest to file for SSDI (I'm an RN and there's no way I am safe to work as a nurse in any capacity right now).

sorry to mememe- now the 2 year old is back!

[derrie]

Anyway, Derrie, sounds like a lupus rash. My situation was like that- I did have a positive ANA, high sed rate and high CRP, plus low CH50 (which I think isn't typical of lupus), and my old rheumy was on the fence. Then on Easter we went outside to take pictures of my kids and in 10 minutes I had a HUGE rash on my face and chest. Pay close attention to how your symptoms are after the rash pops like that- I usually have a small flare in arthritis and blood pressure issues with mine.

Hey, Rachel, thanks for the feedback. I haven't been feeling too bad lately. I'm functional, I just feel like I'm in slow motion, sort of stiff, and I move like I'm choosing my motions very carefully. I'm moving like an 80 year old. I'm 30. Ah well. I don't feel like I really have any classic lupus symptoms, beyond the malar rash, which is definitely photosensitive. Could still be rosacea, though. Rheumatologist on Friday. I'm curious to see where he goes with this. Though I know fibromyalgia will still likely be on the doctors' lists of "might be's" right now, if anything, I hope this stupid, ugly rash will give them the impetus to dig a little deeper to see what's going wrong with me.

---

But wow-- it sounds like you're going through a lot right now. Considering your neuropsych evaluation and the demands of nursing, I think you're definitely reasonable to consider SSDI. From what I remember from my elder law class in law school (which also covered stuff like SSDI and guardianships and the like), the SSDI process can be somewhat drawn out and arduous, so the sooner you start on it the better.

Oh, and Rachel-- what are your doctors thinking regarding MS right now? Do they think your neuro symptoms are coming only from SLE, or do they still think MS may be the culprit? And do you have any next-steps in your work-up?

[leahchris]

Had a GREAT check up!

Sorry I didn't back sooner. The holidays are super busy at my newspaper and I am short-staffed.

So, I saw my neuro on November 18. The PA was very impressed with the progress I have made. He basically told me at my last appt that they had their doubts about the MS, after 20 years, of the yes-no-maybe-yes-maybe rollercoaster. When they did that I decided to live my life like I don't have MS. I have been doing aerobics and losing weight. But the most important change I made was ditching my diabetes meds. They were really making me sick (they help cause a heart attack in August.)

So, I am stronger, leaner AND they think they have located my medical records that were lost. I still use a cane some times and I have fallen several times lately, but I think I am on the right track. All in all, the best check up I have had in a LONG time. I know that MS comes and goes, and I have been in a wheel chair in the past, but I will take every good day I can get and praise the LORD for them.

So, to everyone, hang in there. Limbo sucks, and I have been in it longer than most of you. But, this disease can go into remission, and it can take a long time to do so. There is hope for all of us. If you had seen me 10 years ago, you wouldn't believe I am the same person.

BTW, I finished my bachelor's degree after 30 years of off and on again school. I graduate Dec. 17! It is still not real for me.

I will try to respond to each of you soon. I just wanted to share some words of hope to everyone. Just a few months ago I had very little hope. This forum helped a lot. Thank you MVM. You don't know what this forum does for us.

Leah

[minivanmama]

Sorry that i have been away.

Maitrimama - Good to see you. Glad your tests are done and lp went well. Hope you get answers for your eyes i know that can be scary.

Praying for answers at your neuro apt and you are welcome for the limbo thread. (((hugs)))

ChristieAnn67 - Good to see you. I am glad that you got some rest. Sorry you had such a bad reaction to lexapro i am glad that you are off of it now.

I am sorry the apt got mixed up. I have had that happen before. I hope you don't have to wait to long to get back in to see the neuro.

Get to feeling better and lot of (((hugs)))

Greg - Good to see you. Sorry you did not get answers. Glad that you did get the referal.

I know six months is a long way out but i may be worth the wait. I sure hope you don't have to wait that long. Let us know when you get your apt.(((hugs)))

Derrie - Good to see you. Bless your heart. I pray that your doctors will be able to answer your questions and give you some help. It is all so frustrating sometimes.

It is great that you have a photo of the rash. I hope you get to feeling better. My leg pain is also my arch nemesis now and i am ready to scream. Lots of (((hugs)))

jumpinjiminy - Good to see you. I am glad that the PT and meds are help you. That is good news.

I pray that your neuro apt will go well. I can understand the hesitation to go and i have been there and know the feeling. It is normal to feel that way. Just know that we are here cheering you on.

I hope you get to feeling better and that your SX will go away soon. lots of (((hugs)))

Strhuntrss - Good to see you. Bless your heart. Wait and see if hard to do when you are feeling bad. I am glad that you can manage your SX.

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

MommyRN - Good to see you. I am sorry that you did not get answers this time. It is frustrating. Lots of (((hugs)))

Jsage - Good to see you. Thank you for thinking of me. I am glad that you are feeling better this week. That is good news.

Enjoy relaxing and (((hugs)))

Mrolbiecki - yes the island is the place for you. I am glad that you found us and welcome. (((hugs)))

rsb - Good to see you. I hope your little ones are feeling better and that you did not get sick.

I know the cog results must have been a shock. I agree that it would be wise to look into SSDI. Bless your heart you have a lot going on. Keep comeing to the island and know that we are here for you.

Lots of (((hugs)))

leahchris - Good to see you. you have been busy. I am so glad that you were able to come of the diabetes meds and lose weight and do aerobics. That is such good news.

I am glad that you are on the right track and graduating on the 17th. Congrats!!! I am glad that you had a great check up. Keep up the good work and know that we are here cheering you on.

Thank you for your kind words and i am glad that the island had help you. Lots of (((hugs)))

Well i am off to get kids off the bus. I have not heard for my rheumy so still waiting to know what to do next. My fatigue is really bad today.

I will check back later. Lots of (((hugs))) everyone.

[jsage]

I just wanted to share some words of hope to everyone.

Leah, I appreciate hearing your experience. I've always felt that I'm reasonably active, and I do exercise almost every day. But reading about what you've done (and Skinny's effort too) has helped me understand that I need to take it up a few notches!

I definitely want to remain self-sufficient and independent to the most reasonable degree possible.

have a wonderful day,
- john

[minivanmama]

Hi Limbo island

I am going to start the new thread now. I hope to see everyone on the island soon. I am now going to ask the moderator to lock this thread so we can post on the new one.

Lots of (((hgus))) and thank you moderator.