Calling all limbo-landers limbo check in 11/8/2011

[photomama]

It has been a long, frustrating road and I wouldn't wish it on my worst enemy. I hope everyone here gets answers much quicker! But I know of others who have been in limbo for longer.

I am not here all the time, I just can't deal emotionally with it. But sometimes my husband gets tired of my complaining. LOL

I've been thru 4 neurologists. 3 of them gave up. You get to a point where you start believing you might be crazy (especially when they tell you that it is all in your head!).

My issue is my symptoms are progressive (slowly, thankfully!). Other than one flare that was balance related, everything else has slowly crept up on me and then kept getting worse. I have no remissions. Now, I can work with my body (like with PT) so it appears I get better, but it isn't true remission. Symptoms are all there still.

No lesions on MRI. Now, it is common for progressive MSers to have less lesions show than RRMS. And we all read about the 5% of MSers without lesions. Guess who is either really lucky(?) or has a new disease.

So no diagnosis for me. Everything (and I mean everything) has been ruled out about three times over. My current neuro is great. We treat symptomatically. But no diagnosis.

I am not the only one- if you guys haven't read wheelchair kamikaze, he is really awesome and keeps up to date on a lot of MS things. His MS diagnosis is in question after so many years.

I just think we (researchers, doctors, everyone) don't know enough about MS, neurological stuff in general...anything even related to this, and that is why it is so hard to diagnose and to treat. Why are so many people being diagnosed and then undiagnosed? Or people like me who very obviously have MS (or an MS like disease) and we aren't even trying to treat them after years and years of watching and testing?

Ha ha, I know I am preaching to the choir. Sorry for my (very) long post. May each and every one of you find answers (and soon!). May you find peace with your answers. May there be a solution and a cure for your answers. If there is not a cure, may there one day be one.

[photomama]

Jskmssss- about the constipation thing- do be careful. I have a bigtime issue with it and will not go for 3+ weeks(!) if I'm not taking care of it. I ended up seeing a gastro. First thing you should do is up your fiber intake. I take 8 (not recommended unless you talk to a doc first) citrucel capsules a day. On the bottle it reccomends 2-4 I think? But fiber will help! We slowly upped the fiber to the point where it helped me. And then if there are times where you aren't able to go, my gastro recommended milk of magnesia.

There are a ton of helpful hints in the ladies section on this board. I started a thread there and got a ton of responses. *blush* Anyway, definitely something to watch, especially if you have muscle spasm issues, because that will slow things down too.

[mareintx]

Wow Erin. Just wow.

It doesn't make sense to me that when someone obviously has MS like issues that are progressively getting worse it is so hard to get a diagnosis or DMDs.

My biggest problem in the world is not knowing; I fear I'm going to be stuck in limbo land as some sort of twisted fate.

Jumpin - 18 credit hours is a lot, if you are worried about having added issues with your Mom (I pray you won't) then you might think of dropping to at least 15 (one class). Sounds like you have a lot on your plate as it is.

[stalo]

I showed many, many lesions on my first MRI. However, I had 1 MS specialist tell me "they not in the right place for MS". Whatever...they're everywhere! So, on the follow up MRI, we were looking for any new ones, which would confirm the diagnosis. No new ones were found. So...I wait to have 1 show up sometime, or I wait to get worse with a major flare, or I hang here w/my current sx and nothing happens. It is what it is...I pray for those of you who obviously have some very wrong & are not dx. My PNP listens & believes me, she just can't dx me b/c all the McDonald criteria haven't been met.

[lynnepynne]

Hi Everyone!
Nice to hear from everyone. The limbo thread is so awesome lately. Even more so than usual. I it!
Maitrimama, you dont seem whiney or complainy AT ALL. We all come here to help proces the stuff we cant with others. And we know how devastating our symptoms are and how obsessive they make us. Dont worry that we are judging you around here, we care.

Jumpinjiminy:

I'm curious, did your first MRIs show anything? I keep wondering why nobody has suggested any follow up MRIs for me. Everyone else gets them. ??? Don't get that.

no worries. No one is offering over here either. I have had a brain mri and and cervical one (I had to nearly beg for it) and nobody is even curious about a thoracic. Follow-up mri?? Why? Just because sometimes walk like crap, have developed Trigeminal Neuralgia, have paresthesias, myoclonic jerks and pee-pee problems? Yes, I am a wee bit bitter...

Stalo

My PNP listens & believes me, she just can't dx me

What a blessing!!

Ok, but for me on bright side: My newest and up to now longest and fiercest bout of TN has pretty much subsided to an occasional *ouch* so I am off meds. Just wiped out though. Like as in, I get up, take the kids to school and instead of going to work like I usually do I go home and sleep for 2 hours. (thereby ruining my sleep pattern) I just can't help it. I am just so tuckered out. But I will trade that for TN pain any day for sure!!

Take care everyone be kind to yourselves and your loved ones,
Lynne

[minivanmama]

Wow it is good to see everyone on the island.

browneyedlana - Good to see you. I am so sorry that your neuro office gave you the run around. I hope your neuro has called you. It is just so frustrating some time.

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

Jumpinjiminy - Good to see you. Thank your for thinking of me and my son. He had a great birthday. I am not takeing classes yet just working with my kids. I am hopeing to start nurseing school soon. I just have to fix my right leg first.

You just keep moveing slowly and working at your PT so you can get better. You are doing great.

I hope your ent can find out what is going on so you can get better. Do take it easy and try not to over do it. Just work at your own pace at home and school. Also know that i am praying for your family and your mom.

Lots of (((hugs)))

rsb - Good to see you. Thank you for thinking of me. Bless your heart with all that is going on. Know that i am praying for you and your family.

I am glad that you are going to cleveland clinic. That is great news. You will have to let us know how your apts goes.

I hope your cardiologist apt goes well and you can find out what is going on and get to feeling better. Y'all have fun with the WII. We have one and my kids love it.

Rest when you can and lots of (((hugs)))

derrie - (((hugs)))

Photomama - Good to see you. Thanks for thining of me and my son. He had a great birthday.

I hope your ENT gives you good news and you can get back to sining. Let us know how it goes.

It is ok to vent here. It is all so frustrating. I am glad that you came here to vent. We all understand how hard it is. You keep hanging in there and know that we are hanging right there with you.

Lots of (((hugs)))

maitrimama - Good to see you. We are glad that you come here to talk and vent. We all understand how frustrating being in limbo is.

I am sorry that you have ON. I hope you will get good news at your neuro and neuro-opth apt. Get to feeling better and let your doctor know about your face. I know it can be hard to talk about thing but do.

Have a good week and lots of (((hugs)))

jskmssss - Good to see you. Thank you for thinking of me. I hope your neuro called you back. Take care of your constipation and i hope it gets better fast.

Lots of (((hugs)))

Mareintx - Good to see you. It is very frustrting. I hope you get good news on friday and get your EEG soon. Our weather has been crazy also.

Lots of (((hugs)))

Stalo - Good to see you. I am glad that you had some normal days. I know it can make you feel sad. I hope you have more normal days to come.

I hope you find the right dose of gabapentin to help you feel better. I hope you get good news at your apt. I am glad that your PNP is on your side. What a blessing it is to have her on your team.

Lots of (((hugs)))

Lynnepynne - Good to see you. I am so gald to hear that your TN is better. That is great news. I hope your fatigue will get better soon.

Lots of (((hugs)))

Ok i will post later about my apt. Need to take a break.

[minivanmama]

ok I am back.

My apt went as i thought it would. My neuro exam was abnormal as it has been all along. This time the new thing to add was foot drop.

We talked about my right leg and he thinks it is not neurological but a mechanical problem with the hip. So he is not doing anyhing. All he did was up my gabapentian.

So now my Rheumy will do my mri to see just what is going on. My rheumy thinks the problem with my leg is neurological.

So now i will wait and see who is right.

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

[derrie]

MVM: That you took the time to respond to all of our posts before posting about your own appointment is a good indicator of what kind of person you are: a very good, kind, thoughtful person! I just needed to recognize that.

A question about your hip: if it's mechanical, wouldn't that be a problem for an orthopedist? Or a rheumatologist, I suppose, if it's a connective tissue disorder. Is your rheumatologist doing an MRI of your brain or spine? Or of your hip? Just curious. I do hope this MRI gets you somewhere. I know how frustrating just treating a bunch of random symptoms can be!

[photomama]

((minivanmama)) ugh...I hope your rheumy can get some answers for you! rheumy's always sound like great, caring docs. But they always get "passed the buck" when neuros don't have answers.

Foot drop isn't fun, catching that toe all the time is such a pain. Just be careful! I hope you get answers to it soon and you don't have to go back and forth too much!

[jsage]

Hi everyone!

I stumbled into this great forum through the back door (search). Derrie was kind enough to point me in the right direction after I left an intro in an old thread (sorry, can't include URLs yet because I don't have enough posts).

In any case, I'm glad I found this forum. Your experiences have given me some insight and relieved some of my frustration (and anxiety). I don't yet know what's wrong with my body, but I'm hoping to have some answers soon!

Please enjoy the weekend
john

[jskmssss]

Neuro called last night

Hi Everyone,

Just an update here. I was waiting for my neuro to get back to me after the last MRI. He is a MS specialist and wanted to review it at a radiology conference.

This MRI had some changes from previous one done several months ago. This one had one enhancing lesion and multiple other lesions. I saw neuro about 5 weeks ago immed after MRI. I called him earlier in the week to see if we had any feedback. He returned my call last night and was very apologetic saying the conference was cxld and there should be another one in a few weeks.

I am just so disgusted with everything. I don't want MS but something is definitely wrong with my body and I wish I could just get an answer. My local neuro told me the only thing it could be is MS but he said to be patient and wait for the MS neuro for DX. I have had such constipation soo bad all week, started to think maybe I had a partial blockage
due to the intense pain. I told hubby last night and he told me although he knows I have issues, I shouldn't always think the worst. He was the one person I felt like I could be honest with and vent without being judged. I took a bottle of Citrate last night and finally was able to go to the bathroom.
I continue to get more sxs, the balance issues, the burning, the pain, the numbness the bladder and bowel issues but still in limboland. Definitely understand why people get so turned off with the drs and the testings. Getting more depressed. Not happy with hubby's comments. Just want to find a rock to climb under !!
I realize soo many people are a zillion times worse off but I guess my coping skills are not too good today.

Thanks Jumpinjimney for your help with the constipation.
BTW - I love your name !!!

Take care everyone. Hope we all have a good week.

[stalo]

Jskmss (I think that's right!)...I can understand being frustrated with your hubby's response. Mine doesn't like to hear about what I am going thru, so I don't talk about it with him too much. It would be nice to be able to just talk about what is happening, but...

I hope he comes around for you! Take care!

[jskmssss]

thanks stalo

Thanks for your support.