SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
My introduction/story *waves*
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
521 members
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My introduction/story *waves*

Hi everyone! Although it seems this place is pretty barren lately, I'm SO glad to have stumbled upon this group and to have had the opportunity to read through several of your stories. Not that I'm glad that so many people are suffering in neuro limbo land, but I've always thought that I must just be the laughing stock of my neurologist's group meetings because it truly seemed like I was the only person in the world who was experiencing a gazillion neurological symptoms yet couldn't get any sort of explanation or solution from doctors. So it's nice to know that I'm at least not alone.

I tried typing up my story a few days ago, but I was getting very frustrated with myself because I kept tripping over my words, so I just gave up. I get extremely brain foggy sometimes. I'm a bit more "with it" right now, though, so I'll try again. Here it goes! I'll try to keep it as short as possible.

I'm 24 years old. When I was around 14 years old, my body started doing weird things. I noticed that it had suddenly begun difficult for me to enunciate my words, especially words with an "s" sound, and I was stuttering a lot. No one around me seemed to really notice I was struggling, mostly because I was a shy teenager who barely spoke anyway. When I did speak, people would ask me to repeat myself pretty often, but I guess no one really thought much of it. I *could* talk. It's not like I was slurring all over the place. It had just became kinda difficult...felt like my tongue was suddenly too big for my mouth or something. Then one day at lunch, I noticed I couldn't taste my food at all. I told my parents I was scared I had tongue cancer, the only logical explanation to my 14 year old self, and they laughed at me and asked where I got this stuff from. So I just kind of did my best to live with it...I became extremely reclusive, more so than I already was, because I just wanted to be alone all of the time. I didn't want to be around people because I had to talk when I was around people, and that was embarrassing and frustrating. So I didn't have a ton of friends in high school, didn't really hang out with people, didn't date...kind of wasted all of my high school years in fear and hiding from life.

When I was in the 12th grade, I started having random dizzy spells. They were short lived, maybe only 30 seconds or so, but they were scary. I also noticed I felt particularly dizzy and off-balanced when I was in rooms with bright lighting and shiny floors, so I learned to dread things like grocery stores and science classes since they often required labs in just those settings. I was also experiencing blurred vision in the mornings and extreme eye pain upon walking outside in the mornings because I guess the contrast in lighting from indoor to outdoor was too hard on my eyes.


The following year just as I started college, I developed an excruciating headache on the right side of my head near my ear that pretty much never went away. I spent many nights crying because it was pretty unbearable, but eventually, I just kind of learned to do my best to ignore it because it wasn't going away. Another thing I noticed was that I was having issues with balance. I couldn't stand still because I would feel like I was going to fall if I did, so I'd just kind of fidget around a lot. I don't know if this is related since it doesn't really sound neurological to me, but I also starting peeing a LOT, like 3x an hour sometimes. At one point, I started having episodes where I would smell an intense burning smell, but no one else around me could smell it...this doesn't really happen anymore, though. This all went on for a couple of years. I avoided going to a doctor because I was terrified I had a brain tumor and would have to have brain surgery, so I largely just kept everything to myself.

About two years later, I started having random gagging fits and noticing cognitive difficulties. I was struggling to find words and formulate sentences. I was initially a really good writer, and suddenly I just sat in front of my computer for hours upon hours struggling to piece together sentences to write my college papers. I would often catch myself meaning to say one thing or write one word and instead type something completely different, so I would have to read through my papers over and over to make sure I didn't turn in something that made no sense. I was also having issues with processing new information. I had extreme difficulting following along with film or book plots because I couldn't remember who was who and what had already happened. I had to write and rewrite and rewrite and rewrite class material before the info would begin to sink into my brain. My memory was shot. Yet I developed strategies around all of these issues and managed to graduate college with a pretty high GPA. Basically, I just set aside hours upon hours upon hours to write papers or study to compensate for the difficulties I was having. I took several film classes but could never follow along with the plots of the movies we watched in class, so I would just go home and read summaries of the films over and over until I had a grasp on what happened in the movie. Then when we discussed the movies in class, I sounded like I knew what I was talking about even though I couldn't follow along with the actual movie. Another issue with watching movies was that it became difficult for me to recognize new faces, so it was hard to tell the difference between brown haired guy A and brown haired guy B.

Eventually, once I graduated school, I couldn't hide from these issues anymore and sought out a doctor...except that didn't work out how I'd hoped. My GP told me it was anxiety. I went to an internist, and he sent me to a neurologist. The neurologist said he didn't see anything wrong and I could come back in another 5 months. I went to an acupuncturist out of desperation, and he said it sounded like Lyme Disease. He treated me for 3 months, I saw no benefits, so I stopped seeing him. Then I went to another neurologist...he hasn't been helpful either. The cardiologist I went to found nothing. I went to three different chiropractors...nothing they did helped. I went to an ENT and had my inner ear tested for balance disorders...negative. No one seems to have any idea. No one seems to have any interest in helping me figure it out either. It always comes back to, "Blah blah, you're young, blah blah it's all just stress/anxiety/depression/your imagination."

This has already gotten ridiculously long (sorry), and I'm falling asleep, so I'll end this here. Sorry for the rushed ending...I'm beat.


So there's my story to add to the pile. Nice to meet you all! Sorry if I have any major typos. I tried to correct them as I went, but I'm too tired to read through this all again.
7 Comments
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2034625_tn?1392646892
Welcome! Sorry to just be reading this now.  I only get notifications for replies to threads I'm following and not for new threads, but I have been checking for your post and I'm happy you told us about yourself.  You've come to the right place!  This group, although pretty slow at the moment, is made up of people who are or have been in the same situation your in now where they docs are not quite sure what's going on.  

How long have you been seeing docs? Have any of them actually referred you for a psych consult?  The reason I ask is that often a good psych doc can often be a great ally.  My first neuro was sure I was depressed and anxious and sent me to a psychiatrist a few times.  They even called one in to talk to me in the ER once when I went in for really bad chest pain (apparently tears while in pain meant depression to them?).

Anyway, the psychiatrist listened to what was going on and not only armed me with a letter of good mental health, but also made recommendations to several new doctors.  He made the good point that dealing with chronic health problems can be stressful and that if I needed to see him in the future he would be there but that I was just not in need of his services at that time.  

Another thing that going to see him helped was that my docs had to respect his professional opinion and lay off the psych idea.  (Didn't help in the long run, still needed to change docs a few times.)

Anyway, two years later and I have a few diagnoses and a few question marks about a few of my symptoms, but with the right doc (neuro number 4?), it's all working itself out.

Have you had an MRI? One thing to be comforting is that if something really urgently critical was going on, a neuro exam and/or MRI would show it.  I know that doesn't help dealing with symptoms like dizziness or cognitive function, but it can maybe give some peace of mind that the big things have been ruled out.

When is your 5 month followup?  

Hugs,
Laura

I hope this makes sense.  My TN is flaring a bit today.  




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1530171_tn?1362547225
Hi freefallin and welcome to our little group.

I've just returned from Europe late last night after a month, so a little catching up is in order.
Your post is extremely well written and detailed and it not only showcases your writing skills, but  also your perseverance to overcome huge  challenges, in your relatively young life. Remarkable!!

If you have read any of my posts here, you probably concluded that I'm the alternative or holistic poster.
Having said this, I will take some time next week to attempt to make some sense-I know it makes little sense to most- out of all that you explained, in regards to your health challenges.

There are no simple medical solutions, as such approaches usually
deal with symptoms -fishing for the right prescription drug and rarely reaching the root cause.

Stay strong and give yourself a big BRAVO, for  having achieved what many people will not, in an entire lifetime! You know what I mean.

Blessings!
Niko
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Unfortunately, I've already had depression and anxiety stamped into my medical record thanks to the neuropsychologist my neurologist sent me to to have neuropsych testing done. They made me do all of these crazy tests to measure cognitive function. I think the tests were bogus, like they asked me questions such as "Who is the president of the United States?", had me fit blocks into holes while blindfolded, and had me complete very basic math problems as if those tests had anything to do with the types of cognitive issues I reported. So then when I scored highly on those tests, the neuropsychologist wrote in my report that he would suggest that my symptoms are due to psychological factors. Severely ticked me off. The depression diagnosis, though, isn't really inaccurate. I am REALLY depressed, but I wasn't when this all started. After 10 years of feeling completely out of control of my body and therefore my life, I don't know how it would be possible for me not to be depressed, but no matter how much I told him that the physical problems began way before I felt myself slipping into depression, he just kept telling me that depression explained the problems I have. I don't get it.

Yes, I had an MRI done. There was a small spot on it, but my neurologist thinks it's too small to be significant, so he just sent me home and said he'd see me in 6 months. I'm supposed to have another MRI next month to make sure the spot didn't grow or anything, and then I'm going to another neurologist because I didn't want to go back to the one who never did anything to me. No clue if this guy will be any better. The technician who did my balance testing told me to request to see this one doctor she knew was really knowledgeable, but when I called and asked, he said he didn't want to see me but I could see this other guy who just started working there a few months ago instead. Annoying that I can't see who I want to see with my own money, but whatever; I've learned that I don't actually have much say in my own healthcare because of the way the system is set up.

That said, I thought a clear MRI would give me some peace of mind, but it's honestly just made matters worse because all it did was cause more people not to believe me, and I'm still dealing with the issues.

As for the five-month followup, that was with the first neurologist I saw. I dropped him a long time ago. He was even more disinterested in helping me than the second guy. I'd sit in the exam room waiting seriously 45+ minutes for him to enter, and then the appointment would last maybe 5 minutes total while he told me a whole lot of nothing. I stay away from that entire medical group now. They're such a drive-thru clinic. My visit with the new neurologist is at the end of next month, though. :)


Thank you for your response. Made perfect sense :)
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Thank you for the compliment on my writing skills. :) I get really frustrated because I used to be a really good writer, and now I struggle just to piece sentences together. I spend a lot of time backspacing and rearranging words trying to figure out how to get them to convey what I'm trying to say, so I'm glad I still make sense to people even though my sentences are awkward sometimes.

I look forward to your input but should also warn you that my area really doesn't have much to offer in terms of naturalistic practitioners. I have an online friend with Lyme disease who does a lot of alternative stuff that she's always trying to get me to try out, but I can't because so much of that stuff just isn't available anywhere near me. I don't have the means at this time to drive several hours away since I don't have my own car, am not in a good financial situation, and driving long distances makes  me dizzy. So while I appreciate the offer I also hope you don't spend too much time typing up suggestions I can't take.

Thank you for the encouragement and kind words. :)
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1530171_tn?1362547225
Hi freefallin.

Unfortunately the odds are against you with allopathic medicine.
While very successful with acute illness and trauma, in chronic, autoimmune and degenerative diseases the rate of successful treatment is dismal.
If it were not for the ability of our immune system to constantly work toward
restoring our health, doctors hospitals and pharmaceuticals would be out of business, since drugs by design target the symptoms and rarely the cause.  
This is only my educated opinion, based on  my experience & my training.

There are many people in a similar situation as you, however, your personal involvement, motivation,  openness, and determination will help you open doors and find ways to effectively deal with your issues.

Take care and best wishes!
Niko
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I understand.

And that *****. If they can't help me, I wish someone would be considerate enough to just say that to me rather stringing me along by scheduling me for more and more tests and appointments several months apart.
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2034625_tn?1392646892
More of your story that I read, more it sounds like you're not getting the right care.  

Any doc who spends 5 minutes with you can't possibly be getting the whole story.  Neurological issues simply aren't that.. simple. I saw a string of neuros like that for a few years.  All of them patting me on the back and acting like I was a nut case.  I finally flew to the US (I'm in Euroland) and saw an MS specialist (the suspicion here was mostly MS or nothing).  The neuro I saw there was like the other side of the coin.  Spent an hour calmly listening and putting the pieces together. He also inspired enough trust that I don't feel like I have to constantly doubt what he's telling me (bonus). ;)

Anyway, I guess my point would be, get a new doc.  One who doesn't specialize in something that's not related to you (like alzheimers or autism, for example). Read lots of reviews and take a point by point short version of what's going on with you.  

Depression is very common among many neurological disorders and that shouldn't stop you from getting the help you need.  When I told my neuro that I was at first told I had conversion disorder he explained why it was impossible and then joked that he couldn't rule out a secondary psych dx, but he was dealing with the physical issues.  A funny and down to earth neuro is a rare thing, but they're out there.  :)

On to the next point, once you find the right doc, getting answers don't always come easily.  Most of the neuro's I've seen have told me that answers to neurological symptoms and illnesses can take many years to solve in some cases.  

In the meantime, there are a number of things to do to stay as healthy as possible.  Those things vary from person to person, but in my specific case I slowly moved to a paleo diet (cut out processed foods, sugar, most grains, and dairy), sleep in a pitch black room, do yoga and pilates, and try to limit my exposure to heat and stress.  The paleo diet has been the biggest help to me.  My mood is stable and healthy and my energy levels are way better than they were before.  I also eat more vegetables than when I was a vegetarian. ;)  

Some people also use acupuncture to help with specific symptoms (balance, trigeminal neuralgia, headache, etc) and nucca chiropractic care to help with the same things as well as limb weakness, etc.  I'd suggest looking into what you may have in your control to improve your quality of life, see what works for you, and go from there.  It can't hurt and in my case was actually a great source of improvement.  

Feel free to drop me a line if you need a chat sometime.  In the meanwhile, wishing you the best,

Laura
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