Calling all limbolanders-limbo check in 5/25/2010

[Shashi]

I'm never getting off this island. Ever.

I got the results of my lip biopsy this morning and it's not Sjogren's. Negative. All of that pain (and now possibly permanent numbness) to my lip for nothing.

I was so sure it would be positive! (Not that I want Sjogren's, mind you, no more than I want MS. But I do need some answers to what has been going on for the past four years.) I have every symptom - dry eyes, dry mouth, dry nose, dry skin, enlarged salivary glands, joint pain, peripheral neuropathy, etc. But no, my doctor said it's ruled out. (My blood tests are negative too.)

So, I guess I'm right back to square one again. Lots of weird symptoms, and no answers. That about sums up my life for the past four years.

And you know what? It's okay. I don't care anymore. I'll just go on treating whatever symptoms crop up, and I won't worry about knowing why. I'm just going to try to enjoy as much of life that I can, as long as I can.

So, if you need me, I'll be in my hammock having a non-alcoholic pina colada with the cutest cabana boy I can find in attendance to fan me and wait on me and cater to my every whim (hey, I deserve it after all.) Wake me up in time for the luau.

[zuzu20]

I don't have any red flags. What?

A quick update; so much for starting the day bright and early. I am still having migraines, numbness in feet,and all that I been saying before dizziness is what sent me in along with all the other sx. I called and my dr was away! Huh?

I was supposed to be seeing him well the new dr who was just in his place saying that my symptoms doesn't require any red flags.
I was trying to get a ct scan which the reason I was coming in what the secretary (i can't remember) said I should come in for. I had migraines and extreme dizziness for almost three weeks now to the point of blacking out.

That's not a sign for red flags along with numbness, tingling, falling, no balance, shaking you get the idea. o man I was in tears in his office, and when I came home. I couldn't believe it.

What is a red flag.? This dr obviously doesn't know his symptoms very well. Said I have no signs of MS. So now I have to wait till dr. comes back from holiday. Again. I got home and got some Ice cream and hope that cabana boy comes over hear soon. I stuck the ice cream tub on my head it was nice and cold ha ha. I am not going to have that dr. ruin my day. I will try. keep on smiling through it all.

[mjan]

I'm never getting off this island. Ever.

I got the results of my lip biopsy this morning and it's not Sjogren's. Negative. All of that pain (and now possibly permanent numbness) to my lip for nothing.

I was so sure it would be positive! (Not that I want Sjogren's, mind you, no more than I want MS. But I do need some answers to what has been going on for the past four years.) I have every symptom - dry eyes, dry mouth, dry nose, dry skin, enlarged salivary glands, joint pain, peripheral neuropathy, etc. But no, my doctor said it's ruled out. (My blood tests are negative too.)

So, I guess I'm right back to square one again. Lots of weird symptoms, and no answers. That about sums up my life for the past four years.

And you know what? It's okay. I don't care anymore. I'll just go on treating whatever symptoms crop up, and I won't worry about knowing why. I'm just going to try to enjoy as much of life that I can, as long as I can.

So, if you need me, I'll be in my hammock having a non-alcoholic pina colada with the cutest cabana boy I can find in attendance to fan me and wait on me and cater to my every whim (hey, I deserve it after all.) Wake me up in time for the luau.

HUGS LISA.. did you read my prior post to YOU in case the Sjogren's test Was negative? Please read it.. doesn't mean you cannot be treated for Sjogren's as I am..but not with the heavy duty drugs..just the symptoms. I WAS on their meds..but the next Rheumie would not keep me on the meds without the tests being positive. THAT is why I never wanted that lip biopsy. ok? There IS a 40% chance the lip biopsy would be neg..so I opted NOT to have it done.

I am here for you, LIsa

Jan

[minivanmama]

zuzu20 - You have had a day. I am glad that you got to go swiming. Sorry about your fall. I did read you post well the good thing is the lifegard was cute.

I am sorry that you had a bad apt this afternoon. I would have cried also. I can not belive that he did nothing for you. My PCP would have sent me to the hospital. I am sorry that you are going to have to wait. I know that must be hard.

I wish you could see someone else. I know it is hard but keep at the doctors you do need to be seen and find out what is going on.

Keep on smiling and enjoy your cabana boy. ((((hugs))))


Shashi - I am so sorry. You can build your hut next to mine. I know how you feel about the pain and the numbness that might not go away. I had a nerve biopsy on my leg 2 years ago. The results were negitive and now i have numbness that will never go away on my foot.

I know you want answers. I was sure also that it would give you answers. Keep on hanging on and keep on going.

Enjoy your drink and you cabana boy. Get some rest in your hammock. (((((hugs))))


Well good night limbo island and sweet dreams. I over did today and boy am i feeling it. I am off to bed. ((((hugs)))) to all.

[Shashi]

Jan, my ENT did prescribe some meds for dry mouth, but she said the side effects might be worse than the condition. Right now, I can handle the dry mouth. I use eye drops for my dry eyes. I can't get Restasis because my insurance won't pay for it (though I did get to try it about a year ago and it worked great.)

As for my other symptoms, I have meds for most of them, so I guess I'll get by.

Jan, don't ever get that lip biopsy. I am having a heck of a time! Tonight I was rinsing my mouth as my ENT directed me to, and my last stitch came out (I lost the other one two days after the procedure.) I now have a big hole in my lip, which makes eating and talking even more difficult. I wish I'd never had this procedure!!! And I wouldn't recommend that anyone else have it either if they can get by without it. (There has to be a better way of diagnosing Sjogren's than whacking a hunk out of your lip!)

Anyway, thanks to you and to Ava (Minivanmamma) too for being so supportive. You're both such a blessing.

[ShakespeareMama]

Hi, everyone!

Zuzu, Shashi - I'm so sorry for what both of you are going through. Try to hang in there with the rest of us. We can make it through all of this, together!

mjan and minivan - I hope you're both doing well, today. *high five* for the constant support.

Today hasn't been too bad of a day for me. The temps weren't as high and I was actually able to get around fairly easily (with my trusty cane, of course. I've named him Alex).

I went to the EMG. It does hurt like a mofo but, like you said Jan, it was very quick. I took your advice and did some labor breathing. I even talked about you to the tech. Hehe

I thought about all of you while I was in there. I came to the realization, again, of how appreciative I am of all of you and this site. So...thanks, guys!!!

I did ask the guy about the needles and he said that was a different kind of EMG but he was impressed I did my research about them (and still showed up! Haha). Yay for no needles!

Oh, and I only got the test for my legs. I'll be going back next Thursday for them to test my arms. I hope I get the same tech (he was a cutie! hee hee) but, chances are, I won't. Oh, well (man, I need to get out more).

As for other things, I still haven't gone to see my PCP (still a bit disgruntled). Maybe if I have nothing better to do, I'll swing by in the morning.

I'll definitely be calling the neuro, though. I really can't wait until September. If I wasn't walking like I've had my leg broken in 3 places, then, maaaybe...

But on a good note:

I went grocery shopping, today! It's the first time in a while that I've actually been able to go into a place and walk around for a bit (with the help of a cart, of course). Granted, I only got a 24 pack of water, some popcorn chicken, blackberries and a fruit pie for my begging son (all for under $8! Oh, yeah!) but it's still progress!

I love shopping for food. Mmmm....food. It's way better than clothes shopping, in my opinion.

Anyway, I'm off to go lurk around and see if I can be of service to any other posts (or learn a thing or two).

Since I'm feeling so good, all your drinks are on me, Isanders! I'll even make them myself.

*skwishes to everyone!*

[jsoxfan618]

Hi Fellow Limbolanders,

Sorry it has taken me so long to respond this week. Been busy and tired. From the looks of it, so has everyone else.

Shakespeare: Go ahead and throw those docs to the Sharks. I've got an Ophthalmologist I'd like to throw in too.

Welcome to Mom2 and Jenn. We are here to help.

MS: Glad you are off the island and finally have a dx. Good luck and hope you do well.
Bruised Banana: The cryptic message from your nurse sounds like a Dan Brown novel. I hate when they don't give it to you straight.

Personally, It has been another tough week. Full of ups and downs and lots of confusion. To add to it all, it has been 90+ degrees and humid here in New England. Two Dr. appointments (Ophthalmologist and ENT) this week. Wednesday was a really good day for me (physically). I had energy, my legs felt really good, no eye pain, very little tingling or numbness. I thought I was coming out of this. Then yesterday my legs were like dead weights again.
I met with the Optho on Tues. He said the pain in my eye and numbness in my face is not related to MS or neuritis. Vision is 20/20 in both eyes despite the fact that my left eye is weaker than my right. He told me that its probably. allergies/sinus related. That would be acceptable had I not just told him that these issues have been going on for months, not just during allergy season. I'm wondering if a second opinion from a Neuro-ophthalmologist is the next step?

It just so happened that I had my yearly ENT appointment the next day. The ENT wasn't exactly helpful either because he didn't have any answers. He said he did not think this is at all related to sinus issues based on the fact that my allergies have been controlled fairly well by regular shots and I have not had any sinus infections in the last year. He a didn't think it was necessary to repeat any x-rays or CT scans.
Still waiting to hear back from my MS specialist re: scheduling a LP. Well thanks again for listening. I think I'm gonna take a nap now before I have to pick my daughter from pre-school. Hoping you all have a good Memorial Day Weekend.
-jsox

[mjan]

[QUOTE=Shashi;1229435]Jan, my ENT did prescribe some meds for dry mouth, but she said the side effects might be worse than the condition. Right now, I can handle the dry mouth. I use eye drops for my dry eyes. I can't get Restasis because my insurance won't pay for it (though I did get to try it about a year ago and it worked great.)

I take Pilocarpine which might be a generic..but it works in minutes and its soo great. I could not speak or live without it.

I agree.. the lip biopsy was not worth it.. had read horrible reports just like yours. Even if it were postive its still not worth it.

Obviously SOMETHING is terribly wrong Lisa..your attitude and tenaciousness is admirable..but still...

HUGS my huggable one~!!

Jan

[Jennyfoo]

I've got another 2 I'd like to throw in there with the sharks. My FNP at my pcp's office(who I should have thrown in a few years ago), and the ER dr I saw Wed.

Had CT at ER which was of course fine. ER dr says there's obviously something neurological going on, that CTs don't pick up things like MS, and that she'd recommend I get an MRI. Told me to call my dr office and follow up with them about doing MRI. I called yesterday morning and they'd not received dr notes from ER yet. Said they'd call me back once they heard from the ER and the pcp about ordering MRI. I just called. FNP was out of the office yesterday(why didn't they give it to the dr?) so nothing got done. ER notes just say I'm to follow up with dr about further testing and possibility of a MRI. She told me she was going to urge them to do MRI since something was obviously wrong neurologically.

Yesterday, my RA was acting up in my back and shoulder. I decided to stay up(instead of my usual nap) after putting the 2 year old down for his nap, and have a therapeutic, hot shower for my aching joints. I decided to actually shave my legs since my right leg was stronger and I could stand on it. 1/2 way through my 2nd leg, I had to rinse off, being careful not to get the conditioner in my eyes cuz I couldn't close my eyes or I knew I was going to fall-virtigo extraordinaire.

I stumbled out of the shower, so dizzy, grabbed both my and hubby's towels so I could just crash on the bed. He was on a call for work. I lied there, on the bed, had to put one towel over my eyes cuz the light hurt, my head was pounding, especially in my eyes and ears(felt like my brain was going to explode out of them from pressure), couldn't close my eyes cuz I felt like I was on an ocean current and that was making me nauseated, my hand was jerking weird, legs too, like restless leg syndrome, couldn't pick up my water bottle; knocked it on the floor. It was really bad for about 5 mins, then started to get better. Oh my gosh I felt like I was going to die or something. I'm going through this, trying not to scream cuz my hubby is on the phone with his boss, and I didn't want to freak out the 3 older kids. Lmao now about it though.

It honestly didn't occur to me, not to take a hot shower. They're a rare luxury. I'm usually in and out in about 3 minutes cuz the 2 year old is in the other room and hubby's keeping an ear on him. My 2 year old is VERY busy, climber, loves to take every opportunity he gets to do stuff like dump all the soap from the bathroom on his bed while "washing" his hair with it, or climbing up onto the washer to get into the cleaning supplies. I swear he's part monkey. He's figured out "babyproof" door latches and cupboard latches too recently. Aauuuggghh!

No more hot showers after that. I'm actually feeling a little better. The strength is back in my right leg mostly. I'm not as dizzy either. Still have a terrible headache, buzzing sensations in my body, weird jerks and twitches, and am exhausted though. I feel very "off"; very strange. But still, less dizzyness and virtigo.

[minivanmama]

What happens when good PCP goes bad......

He gets to swim with the sharks!!!!!!

I call my PCP at the begining of the week to get my synthroid refiled. I called the pharmacy today to see if it had been called in. I have called many times this week to see if it was there.

No one called it in. So i call my pcp office and it is closed for the weekend. I am told that i can see the doctor on call but he has never seen me. I have a very long medical history and know that he would not do anyting.

So i am hopeing my rhumy will call it in for me. I told the nurse and she said that she would. I am keeping my fingers crossed that she calls it in soon.

So i am opening the shark tank and watching my PCP walk the plank. Come and take seat any one else have a doctor that needs to swim with the sharks.

Shashi - (((((hugs)))))

jsoxfan 618 - Good to see you. Watch out for that heat. I have problems with heat so i know how it feels.

I think that you need to see a new eye doctor. I don't think that you did get your questions answers. You may want to ask about a neuro-opth. Talk to your neuro and see what he has to say.

I hope that you are feeling better soon. It is always good to have a good day. I hope you have many more. I hope you had a good nap.((((hugs))))

mjan - ((((hugs))))

Shakespearemama - Good to see you Glad that you are haveing a good day. I would call back and ask for the cuite tech. I think that would make the test better.

I hope you EMG will give you some answers. I am glad that you made it through and that the leg one is behind you. I am glad that we help you make it through. We are always there to help.

Glad that you have been out and about today. Just reading your post made me hungry. I hope you have a good weekend. I will take my drink now someting really cold.
(((((hugs)))))

Jennyfoo - Your 2year old souds like mine was at that age. He is now 5 but i remember he loved to climb. They do keep you busy.

I am sorry that you had that reacton to the hot water. I have problems with heat so i know the feeling. I have take falls out of my tub because of the heat. Just be careful and i am glad that you are feeling better.
((((hugs))))


Well i am off. I will check in later. I am now watching my pcp walk to meet the sharks.

[mjan]

HUGS to all esp SHAKESPEAREMAMA~! I am so proud of you for be honest and trying my suggestions re: the EMG. You could've thrown those thoughts and ME out the window ~~

But this tech does sound like a cutie...so I think I should accompany you next time so I can check him out to.

By they way, a TECH does not do EMGs..it has to be a neurologist trained in conducting EMGs..AND NO needles??What the hey? LOL I wonder what you had done? Sounds like you do have zaps of electricity right? hmmm...

Glad you are feeling somewhat better..this weather is so nice.. I am pretending I am on vacation (in my own home). cuz I cannot go to my yearly vacation in June. I can no longer drive (seizures) and I need the money to pay my medical bills as my income is now 1/2.

Bless you all..Jan

[mjan]

Hey Minivanmama..does your pharmacist know you well? You get all your meds there so he knows your RXs??

Cuz when I need a refill and they do not call it in..my lovely pharmacist will give me a week or so worth until she gets ahold of the doc.

This is why they want a 48 hour notice..but I have called THAT day and she'll help me out.

Besides the doc doesn't call the pharmacist..they either have their staff fax it in *unless their office computer they write on is connected then they do it themselves. Its the RN who calls it in for the docs, usually. You could ask the after hours doc to do this..if its only refill but often they are uncomfortable when they do not know you.

Let us know k?

Jan

[minivanmama]

mjan - Yes. I know the pharmacist very well. I did talk to her tonigh and she will give me some of my meds till i can get ahold of my PCP.

I am hopeing that rhumey will call it in but as of 5:00 she has not called. I will see tomarrow how thing go. I am out of town next week and really need my meds.

I did call the after hour line. The on call doctro will not do that because he has not seen me. I have a long medical history and he would not do anyting.

((((hugs)))) and thank you for checking on me. It will get worked out.


Well i am off. so good night limbo island and sweet dreams. I will try to check in tomarrow but if i don't i am going to start the limbo thread on sunday before i leave. ((((hugs))) to all.

[SpaceCadet]

Utterly Dumbfounded

Hello to all.

I don't know where I stand at this point. I guess I am looking for some people who "get it". This seems like the place.

I am 33 years old. I started having some odd problems with my heart getting to over 250 beats a minute from my teens into my 20's. At 27 I had a cardiac ablation to make the horrible episodes stop.

Shortly after this, I had pain in my right tonsil. I ended up having a pretty awful time with it. They removed my tonsils at 30. It was only the right tonsil that had an issue.

Somewhat during this time, but mostly after, life has been a series of strange bursts of inflammation and pains. Almost exclusively on the right side of my body. My throat feels a little sore and numb- on the right side. My eye is swollen- on the right side. My right hand is always swollen. There are times when my lips and face are swollen to a point where people notice. My shoulders burn, my knees burn, the top of my right foot burns, I am TIRED. I make a to do list, and I am never capable of completing all my chores. I get headaches, mostly on the right side. I tingle.

But the most alarming are the recent "new" episodes. Sciatica, I fell hard outside once, and I have a very localized pain in what I believe is my intestines on the right side- which is constantly there- accompanied by diarrhea.

I am not seeking sympathy. I am wondering if this is a common occurance. Is anyone else having this happen? If so, how long has this been going on?

I have been seeking serious help for over three years. From my doctor, to a rheumatologist, and finally- the neurologist. I had an MRI today. They have thrown around the words fibromyalgia and lupus for years, and have done nothing of real substance to find an answer- though my rheumatoid factor was very high when I was first examined for inflammation a few years ago. For the first time, MS was mentioned a month ago. The doctor seemed very casual on it, and told me not to panic. I was in his office less than 10 minutes and he seemed to blurt out that he didn't think it was MS rather quickly. Seriously, in 10 minutes what can you determine on a patient you just met? I was a bit offended. The cavalier attitude made me feel once again that they think I am some sort of hypochondriac. I can't function the way I should be able to at 33, and after years of this I'm still made to feel like a crybaby at the doctors office. They still treat me like they are doing me some huge favor.

Sorry such a long one, but I am absolutely stumped.

[Audmom3]

Limbo-land! Wow, I thought I was all alone or crazy!!

Hi There! I was searching the internet to find information on "probable MS" when I stumbled upon this group. I thought I was all alone out there in limbo land, or just crazy.

I am 37 years old and started having strange symptoms about 5 years ago. It started with joint pain, swelling- in my fingers, toes, and the pads of my feet, and TERRIBLE fatigue. Saw primary Dr, tests all came back normal. The symptoms continued off and on for a few years. Had an episode of extreme weakness and fatigue. More tests, this time one came back abnormal (of course I can't remember which one now). Anyhow, off to Rheumatologist. At that time I was diagnosed with Reynaud's and told I had an underlying auto-immune disease, just not able to diagnose yet.

Several months later I woke up unable to bear weight on my legs. I spent a week in the hospital and had all sorts of tests. Neurologist diagnosed me with Acute Transverse Myelitis. I had IV steroid treatments and physical therapy. It took weeks to get the strength back in my legs.

Over the past three years I have had continued symptoms, continued tests, continued misery. My worst symptoms are FATIGUE, muscle weakness, numbness, and tingling. My Reynaud's is so bad now that my fingers and toes will go completely numb if I get the slightest bit cold, even inside my house. Grocery shopping is unbearable, as I freeze in the store. My fingers and toes turn totally white, and the rest of my skin starts to turn purple.

I have been of and on IV and oral steroids, baclofen, and neurontin. I just recently started taking Provigil and started Neurontin again. I can go on and on about the roller coaster ride I have been on and the back and forth crap between the Neurologist and Rheumotologist. It is so incredibly frustrating!

What brought me here was just a curious search for "probable MS," because that is what I have been told I have. My Neurologist wants me to start Copaxone, however told him "probable" wasn't clear cut enough for me. What I do know is that my CSF came back abnormal, I have 2 "spots" on my brain, and family history of MS (my mom has it). But I also have weird rheumatological stuff going on-the Reynaud's and some sort of Vasculitis(had a biopsy done on my leg). I appreciate my Dr's not being quick to label me, but I'm done with "probable" and "underlying"-I want to know what the heck is going on!

I am mostly just sick and tired of being so TIRED. I used to be super active. I have 3 young, very energetic kids. It's so hard not feeling good!

Nobody really gets it because I look fine, but I feel awful.

So that is where I am at in Limbo land. I see the rheumotologist on June 10th and go back to the neurologist in July. I am sure it will result in the same "underlying" and "probable" crap.

So sorry to say, but I am glad to see there are others like me. Just waiting and waiting.

My husband doesn't quite get the whole "probable" thing either. He pretty much just blows it all off. It is frustrating, but I know he can't deal with it. His mother has MS too. She was diagnosed years before my mom was and is unfortunately doing terrible.

I never expected anything like this to happen to me. I guess nobody does. Oh well. I guess I should be happy to be in limbo land, because definite diagnosis land could get a lot worse!