My lay over in "Limbo Land".

By Daryl Thursday, March 05, 2009

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I've created this share post in hopes that a more in depth discussion on those living in the land of "Limbo" can emerge.

I've been on the "hunt" for a diagnosis for about 1 year now. After experiencing a wide array of "problems" over a 10 year period only addressing one at a time as an individual condition or problem. It wasn't until recently did I stop and think they may all be related after having been "fed up" with continuous medical issues.

The conditions or symptoms that have led me in this direction to date are:

Trouble swallowing-started about 10 years ago, lasted on and off for about 4-5 years.

Muscle spasms-started about 8-10 years ago, on and off till present.

Muscle pain-same as above

Severe headaches-same as above

Bowel and bladder problems-same as above and have been diagnosed w/ IBS.

Severe heart burn-same as above and have been diagnosed w/ GIRD.

Blurry vision/eye pain-about 8-10 years w/ a break in the middle, and comes and goes.

Slurred speech-about 4-5 years and comes and goes.

Numbness and tingling in my hands, feet, and face-I can't remember the first signs.

Chronic fatigue-about 6 years and is persistent. No CFS diagnosis.

Balance and coordination problems- the newest addition to my bag of symptoms

for about the last 6 months.

Cognitive problems- Fairly new, can't quite remember when I noticed.

So far I have seen my general practitioner, who immediately "ruled out MS" by looking at me. Then after further examination and tests: Thyroid disorder (negative), Lyme disease (negative), diabetes (negative), and various ultra sounds on my legs for a deep vein thrombosis (for leg pain) my throat (for problems swallowing) and my abdomen (for pain) all returned negative, he ordered a brain MRI and sent me to a neurologist.

The MRI results came back w/ : non specific white matter in the parietal lobe, and abnormal signaling. The neurologist ordered an EMG test on my arms (which I recently had and submitted and share post on) to rule out carpel tunnel and pinched nerves through out my spine. I was told "it looked good". I am scheduled to have the same test done on my legs March 11th.

After acknowledging the "elephant in the room" I asked him, is it MS? And his response was "thats what we're going to find out". So naturally with not knowing what is "wrong with me I am frustrated and probably depressed at times. The only comfort I can take is that my neurologist finds enough evidence to pursue a diagnosis and hasn't told me there's nothing wrong. So if anyone has gone or is going through the same sort of situation: Playing the waiting game and undergoing what seems to be every test under the sun to provide you with the much desired "explanation", know that you are not alone. I have found a lot of useful information on this site and don't feel so "crazy" anymore. I hope that all of us can find out soon what is "wrong" with us so we can get on with our lives and focus on the management of what ever ails us. I wish you all the best and hope you can share any of your experiences with the rest of us in "Limbo land"-turns out there's no height requiremnet for the rides here:)

Do you see "them" too?

Comments (10) | Add comment

My Six Sons

3/ 5/09 1:15pm

Hi Daryl

Reading through your post, and your other post, I feel a connected to your frustration. If you read my sharepost and subsequent comments, it may make you feel better too. There are a couple of things that struck me, and that I have not heard anyone else (except me) say. I would really like it if you to read my posts to see if you can find anything else that is similar.

I too was told "non-specific white matter", although they said lesions, but mine are in the left temporal lobe. The second MRI showed that there were "alot more non-specific white lesions" WHAT DOES THAT MEAN??????? I have not heard anyone else report this finding.

Abnormal signalling, same - except they told me that was what caused my seizures and therefore wa

I have described in as much detail as possible in my post, the trouble I have swallowing. I would be very interested to know if your problem is similar.

Bowel problems, I too have had bowel problems for years, and also was told it was IBS - but again - is it really?

Bladder problems, I would be interested to know what kind of problems. I too have an issue with my bladder in that I have little to no sensation of when I have to urinate, and therefore at times have lost control.

Please read my post, and then get back to me. I am actually happy to hear that you have issues similar to mine.

We will talk soon

Barb

Lisa Emrich, Health Guide

3/ 5/09 1:53pm

Daryl, Thank you SO MUCH for posting this. I'm glad that you following my request. Now we can get some discussion going.

Barb, I'm also glad that you have read this as well. See, it is a very common experience for many of us who wonder just what is going on.

For both of you. I had started a series of posts under the heading "Beginner's Guide to MS." However, the site producer has given me a different assignment for now rather than continuing the discussion which was building up to some of the very questions you each have here.

There are a couple of posts which may give you just a taste of some issues when it comes to getting an MS diagnosis. I recommend that you read the following:

Beginner's Guide to MS: What is a Lesion?

Beginner's Guide to MS: Consulting with a Neurologist

Beginner's Guide to MS: My Fingers are Numb, Should I Call the Doctor?

By What Criteria or Guideline Were You Diagnosed with MS?

It's quite frustrating to be in that unknown space between knowing that something is wrong but not knowing what exactly "it" is. Daryl, sounds like you are on the right track with this neurologist. Prepare for possibly undergoing Evoked Potentials and a Lumbar Puncture.

Barb, I hope that you are able to get to the bottom of your unknowns. Yes, folks with seizures may have lesions on their MRI scans. Folks with vaculitis can have lesions on their MRI scans too. Here's an interesting page about CNS Vaculitis.

Thanks for continuing this discussion.

Lisa

Daryl

3/ 6/09 10:08am

You're quite welcome. And thank you for the links. I read them and they were very informative. I'm definitely going to have to ask my neurologist flat out: are they leasions or what? You wouldn't think you'd have to almost "beat it out of them" and that they would want you to know exactly what is going on. Sometimes the way health care providers and the industry goes about things astonishes me. Some of their practices wouldn't even fly in the restaurant buisiness! Not having the records, not reviewing the information etc. Can you imagine if on a Friday night at Red Lobster table number 6 never got there Alaskin King Crab? That waiter/waitress would be handed their walking papers. I guess that's the just my frustration showing through again:)

Merely Me, Health Guide

3/ 5/09 4:07pm

I just wanted to personally thank you for writing this post. Month ago I had told my editor here that the population we really need to give some attention to are those who are in this state of limbo. This is where we all begin but some end their limbo status with a diagnosis sooner than others. I truly feel for the people who have been in limbo for years and years. It just isn't fair and I am hoping that by increasing awareness of Multiple Sclerosis on this site...that we can help to speed up the time that people are diagnosed.

I must say that I feel angry about the doctor who told you that you don't have MS just by looking at you. This is just my opinion but "THAT IS RIDICULOUS!"

Please do keep writing about experiences. You are helping others who are in the same boat. Your words matter...please keep sharing with us here.

Daryl

3/ 6/09 9:42am

You are more then welcome. I appreciate the focus that people on this site have placed on those of us in the "limbo" stage. You're right, it is VERY frustrating. Although we have not received a diagnosis of MS, and some of us may never, it is very comforting that people that have gotten that news and are living with it daily can appreciate our situation.

More over, the doctor looking me dead in the eye after a "physical examination" and telling me "you don't have MS" is ridiculous. And it further solidified the "I must be crazy or, I'm a big wuss" feeling I'd been having for years. It was nice to get that "support" after baddleing w/ what ever this is for a long time, finally working up the nerve to tell my doctor about it, and be "shot down". I understand my doctor is the "picture of health" : diver, weight lifter, runner, and believes in stretching more then medication (which is nice at times and for somethings) but I think he just looked at me, and decided: I'm young, I look healthy, I have a physical job, It must be something simple. I can appreciate that, but still have some empathy doc! I wouldn't be here if I didn't have a problem. That's the only time I go to the doctor, not to say HI, but because there is something wrong, I've exhausted all my options and it's not getting better.

So if for other reason, I wanted to be able to let those who have gone through, or are going through the same sort of situation: You're NOT alone. And thank you "Me" for the kind words, and encouragement you show us in your postings, and the effort you put into helping those of us who are fighting to "find an answer".

As a side note, this toke me a long time to write, because I could not for the life of me remember how to spell a few words (simple ones at that). I had to find a spell check! That's the kind of stuff that happens daily and when you don't know what's wrong w/ you it makes you want to scream! Man that's frustrating!

momdukes

3/ 7/09 6:05pm

Darryl, After reading your post, I had to lay down and take a nap, no seriously I did. Those of us who found Nueros, who hit the nail on the head the first time around, do not realize just how blessed that we were. Mine got it right first go round. That happens once in a blue moon. MS is such a clever little monster. But Darryl, I hope that you get the help and treatment you need now. Hopefully you will get to come out of that maze, once they pin it down, it really is not that bad. Yes we have some good days, and yes there are some bad days. It is called life. But like us you will make it, we have no choice. Hang in there Darryl, we do Good luck, All will we fine!

Hollyk

3/12/09 9:37pm

Hi Daryl,

I'm glad that others are speaking up and trying to get together! I've been blessed with a good PCP who at least listens and has worked hard to get my symptoms a diagnosis. It is unfortunately a hard place to be; but I'm happy that people here have been gracious enough to share. I always thought it was easier if you had "lesions" to get a diagnosis. I'm one who suffers with the multitdude and chaos of symptoms that doesn't have any lesions showing on my MRI. It doesn't make the symptoms go away unfortuantely enough.

I wonder if we can find common ground somewhere in our limbo state; someway to help one another? I sure would be willing when I have the ability to do so.

I've finally received a clinical diagnosis of MS; but am waiting on the medical. I have to see a Opthomologist who specializes in MS; my doctor thinks this will show something. Anyway, thanks for your post.

Hollyk

3/12/09 9:38pm

We as a group I mean...

Daryl

3/13/09 8:07am

Most certainly. I'm curious though, what do you mean a "clinical diagnosis" and waiting on the medical? Did you ever have an MRI w/ contrast? That's the next step for me. I had a MRI w/o a few months ago and it came back w/ Nonspecific white matter and abnormal signaling. I just had an EMG done on my legs. I had my arms done a week and half prior. I wrote a post on my experience w/ the "arm" test. Sufice to say the legs weren't that much different and it came back w/ the same results. Had "they" at any point found any leasions w/ you? My doctor keeps refering to the "spots" and "nonspecific" white matter. Last he told me from the out come of my last tests: "it's back to the BRAIN then". Just wondering.

Hollyk

3/13/09 10:04am

Hi Daryl,

I meet the physical symptoms with all other mimickers being ruled out. I have no lesions, that can be seen anyway (although, an MS expert is looking at them-only the "hospital staff radiologist had seen them). A clinical diagnosis means (I'm not an expert-just going off what I've been told) that all other possible illnesses have been ruled out and my symptoms are enough to meet the diagnosis but they don't have "hard proof" of the MRI lesions, Optic Neuritis (ON) or VEP test. I'm trying to find a Neuro Opthomologist on my insurance plan to check my eyes for ON; which my PCP thinks I do have. My MRI was with and without contrast; but that doesn't mean anything other than I don't have any lesions yet or that they can't be seen by the MRI. (There are some parts of the brain that the MRI can not see.) You can have a lesion anywhere there is CNS white matter.

It sounds like you are on the right track. Like you, I've been going through this for a long time. 3 years of multi-symptom events; that are progressively worsening; but after learning about MS; I (along with my doctor) believe this goes back much further. The single symptom illness are often diagnosed as random illnesses; explained or not. Don't forget that there are aprx. 5% of people who have MS who will never show a lesion. I won't stay with a doctor who won't listen; fortunately, I haven't had to make many changes. I hope this helps!

My lay over in "Limbo Land".

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