[braingonebad]

Good morning fellow limbolanders! I hope to see anyone who's in limbo whether you usually check in or not - please, come on in!


Took me a while to get out of bed and get to this today. Why I'm so stiff I dunno - not like I did anything yesterday.



There have been asome new folks lately, so I'll tell you a bit about me - I did an intro but that is way burried by now. I started with migraines about 10 yrs ago. They did a CT - normal - then an MRI/MRA. The MRA showed normal vascular structures, the MRI showed around a dozen brain lesions in the periventricar region, about 3mm.

After that, I had 3 lymes tests - all neg. Lupus ruled out. Dx'd with Reynaud's and livedo reticularis. Some other blood work for Factor II - I'm borderline. More bloodwork - Vitamin levels all good, cholesterol way high, started lipitor.

Started having hip pain, shocks in my R leg - though it was a lipitor side effect.

At this point, that pain, the migraines, fatigue were my only sx and so when they were saying they thought I had ms, I really didn't believe them. Didn't seem to fit, in my mind.

Then a lot of other weird sx started, I had a lot of other tests - EEG normal, VER and BAER normal, C spine MRI showed all kinds of problems. Aha, I thought that was the answer. Then the T spine MRI showed a syrinx and that really explained a lot of sx. I thought I was finished testing.

But my docs didn't agree. My neuro did not think SM could cause any of my sx, or that my C spine was all that big a problem - the NS thought it was really serious, so I was confused - I didn't trust either of them.

I guess that's what limbo is. I know some of what's wrong with me. But I do not have all the answers. Some of my sx are not from my neck or my spinal cyst, neither of which cause brain lesions.

I live with pain, fatigue and crazy bouts of vertigo, weird sx (water dripping on me, bee stings) and lost my job right out of the gate to the migraines. And let's not even talk about cog fog.


So yep, it's been almost 5.5 yrs since they told me I might have ms till now. Do not be discouraged by that, and think that that happens to everyone. It doesn't. It can, but that is not always the way it goes.

The reason (I think) people should know it can take 5 or 10 yrs to be dx'd is this; even if it takes that long, you will make it.

At least now, we have the support, here. I don't know what I would have done all this time if not for my friends online. Please reach out, ask, learn, vent, let us be there.

These are some of the best people on the planet, of that I am sure.



All the best to you, my limbo tribe,
Cathy/Brain

[Jan4you]

WELCOME ONE AND ALL.. dont just peak in.. come and tell us your story. WE CARE and know the struggle of being in "limbo"...For me its been 4 years and still no clear answers. BUT... I do have 2 great neuros, one is MS specialist. Even tho I was DX with benign MS, then had it taken back.. I like they are willing to monitor me and my symptoms. BUT man is it confusing and draining at times.

Hey hey BRAIN... glad you told your story. I dont think I ever heard it all, (or maybe just dont remember LOL)

What I appreciate is that YOU are here to welcome and encourage others who are in this struggle too.

So.. give me a pep talk as I will see my MS neuro Friday AM, the 1st day of my little vacation!! What a way to start my getaway weekend!!

The sleep apnea neuro wants me to see the MS doc to order an EMG of my legs. My arm/hand EMG was positive but he said my left arms was slightly worse than the right. AND its the RIGHT side I have more problems.

I have had buzzing, then electrical shocks that run down my legs, tingling that is increasing. The spasticity is daily. So he wants the MS doc to order an EMG for my legs.

Together they are still trying to figure out why I get these sudden "episodes" where my bp/HR suddenly shoots up, I get weak and eventually cannnot communicate nor remain alert.

I THINK its an autonomic dysfunction and so does my last Rheumy, HE also ruled out another mimic of MS.
AND.. both Rheumies I saw last year do not think I have Fibromyalgia either, tho the MS doc and his staff think so. What gives??

SEE?? Now I do not want a DX anymore. Found out at my age and while trying to change jobs DX could really hurt my career and insurance.

I am on the MEthocarbamol for muscle spasms in my back that now I think its related to the SPASTICITY which I have had in my legs every day.

My job still is a nightmare as this supervisor is once again "observing me" in front of my patients. I do have an interview tomorrow to do Hospice work. I wil try to get out of this place as soon as I can get another job.

So thanks Brain.. listen to your body andhope you take it easy... k?

As far as my little life...Stay tuned.... LOL

Jan

[hurtsobad73]

Hello,

I have been in "limboland" for about 4 years now. It all started after I had a complete hysterectomy in 2003. My body just seemed to go in a complete frenzy. I know they say that after a hysterectomy it takes a while for you to recover. But this was different.

I have always had frequent migraines (since being a teenager), but since 2003 those migraines became more frequent and then I began having daily headaches. My body became completely fatigued. I mean I began sleeping 15-20hrs daily. This was way after my surgery recovery time. Up to a year after. I started having floaters in my right eye and I would get a pain above the right eye that would just kill me. My head would go numb, my left side would go numb. I would get tingles in my fingers and toes on both side of my body. My body would sting...like bee stings. It hurts to were clothes some time. It hurts to take a shower. The water beating on me hurts. Temperature is very confusing. Sometimes cold hurts, sometimes hot hurts. So lukewarm is usually were I keep it. Then in 2005, I started having seizures. My father has a history of seizures. His started when he was 36. However, he had a brain injury at the age of 18, so they assumed it was from that. Now they are second thinking that because of where the seizures are coming from. He is having approximately up to 20 seizures a night at times. He is scheduled for 4 brain surgeries starting Feb. 14. My first seizure was when I was 31. Could there be a connection? I think so. I think genetics play a big part. But my neuro won't listen. BTW, this is my third neuro, the other two say that my seizures are NES, they feel that they are pyschosomatic.UPDATE: Seizures have now been dx as pyschogenic non-epileptic-seizures. I am doing neurofeedback to help with this. So far so good.

I have had partial paralization three times. I was fully aware and conscience of what was going on around me, but could not move an inch. The first time it happened I was awakened at night, and could see the alarm clock, but could not move. I even tried to get a sound or whimper, but couldn't. So I watched the clock for an hour and 4 minutes until I was able to move again. It scared the crap out of me. That was in Sept 2005. Then again in Nov (on Thanksgiving)2005 I lost movement of the bottom half of my body. I couldn't move my legs or anything. That lasted all day. We called the neuro on call and he felt that because I was also sick at the time, that it was just a virus. No big deal. I felt it was a big deal. Then recently it happened again while sleeping. Not much I could do about it, but cry and call my neuro the next day. He said he would "note it in my chart". GEE Thanks. BTW at this time I am on my 4th neuro at Duke University Medical Center and I do like him. He says he just can't find clear enough information to dx as MS.

So there is where I am in "limboland" as of right now. New symptoms here and there, old symptoms getting worse, but the neuro and PCP (they work very well together and always keep in touch) said I should wait untill August to get some more MRI's. It wll be two years since I had my last ones. So I will be patient and wait...I don't plan on going anywhere anytime soon.

Sorry so long, but you asked for my story...lol and to be honest it did feel good to get it out.

thank you,

Missy

[Nancy T]

Nine years here--do I have seniority?

9 years of attention-getting symptoms--hearing loss, dizziness, Lhermitte's, paresthesias, etc. (but stuff going back to 1983 that I never talked to doctors about).

8 years ago -- was told "MS."

7 years ago -- was told "hypochondriac."

5 years ago -- last-ever neurologist appointment.

4 years ago -- fell into pit of depression caused by doctors (PCPs) treating me like a hypochondriac, no hope of ever talking to them about anything. Gave up all expectation of ever getting any diagnosis.

1-2 years ago -- finally got over the doctor-caused depression--with small relapses, during which I had to re-learn the lesson: DON'T go and talk to ANY more doctors about all this--only go see a doctor if you have ONE, and ONE ONLY, specific, serious problem that you think they might be able to do something about.

One month ago -- finally got approval for Baha (bone-anchored hearing system) for my hearing loss--surgery scheduled for July 24--HAPPY HAPPY HAPPY!!

As one of the grande dames of limbolanders, let me give my fellow limbolanders a piece of advice: Don't be in the mindset of EXPECTING or "WAITING FOR" a diagnosis. Don't set that up as a definite, inevitable certainty ahead of you.

Because you may very well NEVER get a diagnosis. You do not have a crystal ball (neither do your doctors). It may happen--it may not.

Just get your worst SYMPTOMS treated sufficiently (always insist on that, of course) and then go with the flow. Accept that there will inevitably be confusion and uncertainty--differing opinions, differing interpretations, unevenness in how doctors see or treat you.

Do the Taoist thing--be like water flowing downhill. Go with the flow. Ahhhh.... Muuuch less stressful!

Nancy T.

[Debbie D]

Hi All. I'm Typing In Upper Case, Since My Computer Won't Allow Me To Change The Size Of The Font.
This Weather Is Whacko!! 83 On Monday, 50 On Tuesday...the Weather Roller Coaster.

I'm Not Going To Share My Story, Since I'm Trying To Ignore Any Sign Or Sx Of My Limboing. I've Given Up Trying To Get An Answer From Doctors. I Have Had New Sxs, But I'm Ignoring Them As Best I Can And Not Telling The Docs. But Thanks To All Of You For Sharing...i Hadn't Read The Whole Story On Your Reasons For Being Here.

Have A Great Week, Everyone.

THIS POST DIDN'T SHOW UP IN UPPER CASE...SORRY

[braingonebad]

I'm with you, Nancy. while being sure what's wrong would be nice, living this moment means more. Peace right now is important, knowing or not.

I was getting too angry, too frustrated. I had to let it go. If they can ever tell me I have ms or not or if it's something else, that's cool. It's cool if they can't too.

Just help me when I ask, and I'm good.

Fortuantely, I finally found docs I can ask, and they will help. Ones I feel some level of confidance in. Because like you, I had lost that. After hearing enough BS, you wonder if any of them have a brain.

(I had an MRI, I know I have a brain, but I wondered about some of those guys)



And hey - very happy about your BAHA. That's very cool, and I hope it makes a big diff in your life.



Hurts - some of your story is a lot like mine. The migraines, the chronic daily h/a, the crushing fatigue. Are you on something for any of that? Mine started just prior to my tubal, but a lot of sx came on right after. I know surgery stresses the body and brings them on.

I also have pain from cold, sx from heat. Weird parasthesias.

I'm glad you like your neuro, but I wonder if he has you on any anti seizure meds? They may also help your headaches. They say seizures are not a sx of ms, but a few people with ms do have them. There may be something related, who knows...

Keep us posted though, okay?

Debbie - I know! Jackets or tank tops? Open the window or turn up the heat? Dh and the kids are supposed to open the pool tomorrow and I'm sitting here with a blanket over me!




But anyhoo... gonna be nice this weekend - what are ya doing? Come on over and I'll mix up some drinks. We can talk (about anything BUT ms and sx and meds and doctors ), float around and goof off.... Sound like fun?

Where the heck are those cabana boys? They'd better be working on their tans...

[braingonebad]

Jan - I am trying to find out who is in charge of the 2x4's around here, so we can whack your coworkers.



You think Major Tom could be our distributor?


Now for that pep talk...

Know what you're gonna say? What you're gonna ask? Need any meds? Stock up on any you can in case you do have to switch jobs, okay?

And if you have free time and want to travel my way, I will do a pool party you will never remember, LOL!!!

And to all of you, I'm not online 24/7 (wish I could be lol) but I am always thinking of you. I've met some of my best friends here. Jan, you are one of them. Deb and Nancy, I've grown dang fond of you two also, and would like to get to know you better as well, Hurtsobad.

Any of you want to talk, pm me and I'll get back as soon as I can, okay?

And Jan, let me know how the appt goes.

[Nancy T]

Originally Posted by braingonebad

Fortuantely, I finally found docs I can ask, and they will help. Ones I feel some level of confidance in. Because like you, I had lost that.

BGB, glad you found doctors you can "ask."

It took me until this year to do that. I switched to Kaiser and got an apparently brand-new doctor--one who hasn't seen enough hypochondriacs to recognize me as one yet!

But I've been VERRRY careful with him. I didn't bring any records (except recent blood tests for cholesterol, etc.), didn't bring up my history of neuro symptoms.

I only went with two aims: get a referral for the Baha--which did involve mentioning my dizziness, of course, since I had to tell him about my hearing loss--and ask him to kind of kick-start me with weight loss.

In discussing my weight and activity I did mention my walking problem, and he himself said we need to investigate this further, and he sent me to a PT.

Of course this is not the ideal for health care. You are supposed to give the doctor a complete history. But that clearly does far more harm than good for some of us.

Nancy T.

[Jan4you]

MISSY, what a mess so sorry for ALL you have been going through. But look up Todd's paralysis a kind of seizure disorder where you feel paralyzed and cannot move your body.

And.. maybe go see a neuro who specializes in sleep disorders. Its amazing what they know. Becuase I get these "episdoes" where I look like I cannot communicate, nor remain alert, but I can hear everything my other neuro thinks I have narcolepsy with cataplexy. Look that up too.

Hope you get answers... and not have to wait any longer.

Best to you ~!!

Jan

[hurtsobad73]

"Hurts - some of your story is a lot like mine. The migraines, the chronic daily h/a, the crushing fatigue. Are you on something for any of that? Mine started just prior to my tubal, but a lot of sx came on right after. I know surgery stresses the body and brings them on.

I also have pain from cold, sx from heat. Weird parasthesias.

I'm glad you like your neuro, but I wonder if he has you on any anti seizure meds? They may also help your headaches. They say seizures are not a sx of ms, but a few people with ms do have them. There may be something related, who knows...

Keep us posted though, okay?"

BGD - I am on Migra-Eaze (supplement) and Verapamil for the migraines and daily h/a. I am on the anti-seizure med Lamictal. I have been on two at a time, but they felt that since I am only having NES that one should be enough unless we see increase in them.

Weird parasthesias, boy you said it...lol

Thanks for everyones response.

Jan4you - I will definitely look up Todds Paralysis