Calling all limbo-landers limbo check in 12/27/2011

[jsage]

you might be able to get some pretty good sympathy attention and lovin

I wonder if she'll stand for such shameless manipulation - at the very least it's credit I can burn later

thanks,
- john

[Shashi]

Hello,

If this test doesn't reveal anything, I think I will go on the testing strike as well, before I ever have a chance to get sick of them...one test is enough, lol!

Before you join the medical testing strike, be sure that you've exhausted all other possibilities that could be causing your symptoms. There are many MS mimics such as Vitamin B12 deficiency, Celiac disease, Lyme disease, etc., and you need to be tested for all of them, because it might not be MS. It could be something different that might be easy to treat. Don't give up too soon!

I've been in limbo for almost six years and have had many, many tests for all of the possible things that could be going on. My doctors still feel that it's MS because I've also had mild optic neuritis, along with all of the other symptoms. But it's just not showing up on my MRIs. That's why I'm taking a break from medical tests. I've just been through too many.

But I encourage anyone in limbo who has just started on this journey to not give up too soon. You may not have to go through what I have, and if you can get started on treatment for whatever it is that you have going on, then you need to not give up. Hang in there!

[khaarina]

It's been 8 months since my symptoms began and the biggest challenge for me at this point is the worry that it is something else. I've researched MS to death and I think I can deal with it. It sucks but it isn't fatal. It's the other stuff that scares the hell out of me: lymphoma, leukemia, some dangerous infectious disease going undiagnosed... I drive myself crazy trying to research this thing, trying to figure it out myself because the docs are failing. And every time I think I'm getting somewhere, I am swiftly knocked back to square one by a new symptom or a NORMAL test result. Right now, everyone seems to think it is MS and I agree with them, but the doubt and worry still nags at me.

[KRISMARK0]

Before you join the medical testing strike, be sure that you've exhausted all other possibilities that could be causing your symptoms. There are many MS mimics such as Vitamin B12 deficiency, Celiac disease, Lyme disease, etc., and you need to be tested for all of them, because it might not be MS. It could be something different that might be easy to treat. Don't give up too soon!

I've been in limbo for almost six years and have had many, many tests for all of the possible things that could be going on. My doctors still feel that it's MS because I've also had mild optic neuritis, along with all of the other symptoms. But it's just not showing up on my MRIs. That's why I'm taking a break from medical tests. I've just been through too many.

But I encourage anyone in limbo who has just started on this journey to not give up too soon. You may not have to go through what I have, and if you can get started on treatment for whatever it is that you have going on, then you need to not give up. Hang in there!

I just feel so well mentally I am dreading the toll that years of tests and unanswered questions can take on your mental health. If the symptoms subside and I don't have an answer I will probably not push more tests....if they continue or if they get worse I know I will do any test I can until I get an answer.

Luckily I have a family doctor that treats me with respect and after one visit to the neurologist he seems equally as kind.

I'll certainly report back this week after I have my MRI done. I'll at least have the report by Wednesday or Thursday...and the neuro said he would get me in right away after he gets the disc with the MRI images.

[hflietner]

I understand what you mean by researching and researching...and then researching again. The way I look at is (I can't believe I will say this) that the best thing to hope for out of all the bad ones is MS. Does that make sense?

Although I have not yet been diagnosed, and am reminded frequently that it may take a while. It at least explains all of my symptoms. Whereas all of the hours, upon hours of research of different diseases (all of which are horrific), do NOT explain ALL of my symptoms. Again, as I stated, the MonSter does.

Hopefully your neuro is explaining what he/she is ruling out as the process goes.?.?

I am not sure if that made any sense? I sure wouldn't wish MS on my worst enemy! And since I'm a limbo-er, I'm not sure what words of wisdom I can offer. ANYWAYS, I will stop rambling and wish you all a New Year full of answers!

[quotefanatic]

Hello

Hello,

I have been on the island for over a year, and am currently in High School. I have seen 7 specialists, whom 6 of said nuero was probably my guy. I have been tested for many things, some including: B12 deficiency, brain tumor, seizure, heart complications, hemochromatosis, Lupus, Lyme disease, and several cancers.

All came back clean. And currently seeing my nuero every 6 months. He is a great doc, and fairly certain I have MS.

My main difficulty is that I have symptoms daily (slurred speech, cognitive issues, heat intolerance, tremors in hands and legs, muscle weakness, vertigo, numbness in hands and/or feet, poor balance, and muscle/ joint pain)

Each day is like a mix and match of symptoms But the issue is that I have these symptoms, and can do nothing about them. I mean it's okay, but sometimes it's frustrating.

Anyone know what I'm saying?

[jsage]

Anyone know what I'm saying?

"okay but frustrating" - yeah, I can relate to that statement. However, to be honest, my symptoms are nowhere near as severe as yours. Pain, numbness, tingling, pins-and-needles, itching and crawling are all in my repertoire. Along with the occasional speech, reading and focus problems. They come and go, sometimes in strange places. They're an annoyance, but not yet a hindrance.

Welcome to the island. I just got here myself, back in November. I've had symptoms, slowly escalating, since near the beginning of last year. However the further I get into tests and reflection the more I think they're not MS and they must be something else.

But look at you - working so hard to keep going! One thing I've noticed from reading everyone's stories here is how important it is to live your life and not let yourself be defined by your symptoms. Yes, they can limit how and when you can do something. But they can't limit your desire, effort and achievement.

Have a great day
- john

btw, anyone hear from derrie? I know she had some things going on and I'm wondering how she's doing

[maitrimama]

Hi All - I hope everybody has survived the holidays and actually had some good times. Not too much has changed for me, some symptoms have gotten a little better =) but most are the same ≈(

Something has popped up that I think limbolanders might understand. I have never been a big fan of Dr's and the past couple of months have magnified that. So now another mysterious (but unrelated) ailment has reared it's ugly head and I am not going to the Dr!

I woke up 4 days ago and the top of my foot going up my lower leg hurt. It has gotten worse, now swollen and reddish with pins and needles. And I have done nothing to injure it, no bumps, bruises or twists. What a pain but I am sure going to the Dr would make it worse.

Does anyone else avoid doctors like the plague?

[mjan]

Hi All - I hope everybody has survived the holidays and actually had some good times. Not too much has changed for me, some symptoms have gotten a little better =) but most are the same ≈(

Something has popped up that I think limbolanders might understand. I have never been a big fan of Dr's and the past couple of months have magnified that. So now another mysterious (but unrelated) ailment has reared it's ugly head and I am not going to the Dr!

I woke up 4 days ago and the top of my foot going up my lower leg hurt. It has gotten worse, now swollen and reddish with pins and needles. And I have done nothing to injure it, no bumps, bruises or twists. What a pain but I am sure going to the Dr would make it worse.

Does anyone else avoid doctors like the plague?

Ouch!! Sorry you are going through this.. but.. just wondering if it could be a "stress" fracture?? You'd need a special angle in xray as sometimes it gets missed as mine did. A year later in the exact same spot, (top of the foot) same bone but opposite foot.. yup.. another stress fracture.

IT may not be.. but something to consider asking about. Hope you find out what it is.. and get relief.. soon!!

Let us know hon, Jan

[maitrimama]

Thx Jan- the fact that I am about as athletic as a rock and I think I am allergic to excercise kind of rules out stress fracture or shin splints. Thx to good genes I don't carry much extra weight. I also thought of Cellulitis but I have been on antibiotics for 6 weeks (to appease the doctor who thinks I have Lyme disease) so that is a long shot as well.

I am using common sense, staying off my feet as much as I can, keeping it elevated and taking some ibuprofen. I'm hoping it will.work itself out...without seeing a doctor

[mjan]

Thx Jan- the fact that I am about as athletic as a rock and I think I am allergic to excercise kind of rules out stress fracture or shin splints. Thx to good genes I don't carry much extra weight. I also thought of Cellulitis but I have been on antibiotics for 6 weeks (to appease the doctor who thinks I have Lyme disease) so that is a long shot as well.

I am using common sense, staying off my feet as much as I can, keeping it elevated and taking some ibuprofen. I'm hoping it will.work itself out...without seeing a doctor

Again you can get stress fractures not just from athletics, BUT when the weakened muscles can no longer support the bone, it cracks. It does not have to do with being overweight or athletic in that case.

When you can, if this continues its worth getting checked out.

Hope you feel better hon~ Jan

[Shashi]

I woke up 4 days ago and the top of my foot going up my lower leg hurt. It has gotten worse, now swollen and reddish with pins and needles.

You need to get this checked out. It could be something like cellulitis, which needs treatment. I know how you feel about doctors, but there are time they are necessary.

Hope you're feeling better soon.

Hugs,

Lisa

[jumpinjiminy]

Maitrimamma - go see your doctor!!!!! Okay, now that that is out of the way and off my chest, you need to go see your doctor!!!! Got it? lol

You might be on an antibiotic, but if it isn't one that kills off the type of bacteria you could be growing in there, it won't work. Also, what about blood clots, fungal infections, shingles, an allergic reaction, or other autoimmune diseases that attack the skin?

I'm not a fan of docs either, but if it were my leg, I think I'd find a way to put it away for an hour or so to go have it checked out. If it's shingles, you could be a vector of infection for a serious chicken pox case in anyone who is immune suppressed. So if you don't do it for yourself, maybe do it for someone else you may come in contact with that isn't as healthy.

Okay, taking off the bossy hat now. Hugs. Going on doctor strike can make us feel like we have some power and say so, and that's okay sometimes. But it can be foolish at other times. If I ever get to where I hate seeing docs that much and I get a numb, warm, tingly rash spreading up my leg, I hope someone comes along to whack me in the head with a stick.

[jumpinjiminy]

Now I'm going to get really gross - flesh eating bacteria, brown recluse spider bite . . .

Can we freak her into it?

[minivanmama]

maitrimama - Go see your doctor. ((((hugs)))) and i hope you feel better soon.

Hi everyone i am starting the new thread now. I hope to see everyone on the island soon.

Moderator - Can you lock this thread so we can post on the new thread. Thank you so much and happy new year.(((hugs)))