the land of limbo...

By Suz Sunday, May 09, 2010

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Hello, I just wanted to write to talk about Limbo Land and never being quite sure what's possibly MS or just something else. I had my annual MRI in february and no new lesions just the same old ones...Which was good news, but when odd things happen like this week...well it's just a little unsettling

I've always had some type of joint inflammation starting when i was a kid in my foot. Well this week was busy, a bit stressful which i tried to manage - okay maybe i overdid it but i was happy and felt like i wanted to get things done. By this weekend my right hand joints and should started to burn slightly - got red and then by day two the bones had popped out and I now have lumps on my knuckles like i do on my foot. I just kept looking at it thinking hmmm now what's going on with this? Not much pain...just achy. More weakness than anything - I have a bit of trouble opening a lid on jar. So i sent note to my neuro just to let her know. I sent one to her about two months ago to let her know about a migraine - I've never had one before like that either - made me feel sick and nothing helped. The next day I felt beaten up. So I just looked at the joints on my hand and said on well it's just something else. I feel inflammed if that makes any sense. Sort of from the inside out.

I told a friend of mine who i don't talk much about things because she always seems to say - well those types of things happen to everyone - I said i'm happy but my body doesn't seem to cooperate. She said everyones body doesn't cooperate as we get older.

I went on the MS walk and used the cane to help - as the walk progressed my legs got weaker and weaker and my balance became more of a struggle but just wante to move my legs to help keep them strong. I have to say - i didn't finish the walk, but was glad to be a part of it with my husband. When they asked does anyone here have ms - I didn't raise my hand, but there i was with my cane and double vision and drunk walk.

anything new can put a question in my head. So it kind of makes me doubt myself. IS this something realted or just part of getting older?

But i cna't help that fear of well what should I do now?

Without a definative answer, when something new happens, I always start questioning if it could be something else and they just haven't been able to prove it. Lymes, MS, RA, Lupus, it's all so elusive and hoping at some point to know what all this is....

SO i will take a deep breath - enjoy my day - it actually snowed here today and now the suns come out. Its pretty wonderful.

Suz

Vertigo episode

Comments (11) | Add comment

Lisa Emrich, Health Guide

5/ 9/10 7:20pm

Hi Suz,

I'm so sorry that limboland continues for you. When I think back, I was in limbo for several years but just didn't really know it.

When you describe your joints it really, really reminds me of my rheumatoid arthritis. It is not normal aging for joints to become red, inflammed, swollen, and weak. My RA has started to act up a bit lately (it's almost time for another infusion treatment) and it really bums me out (to put it lightly) that I have a reminder that this is yet another crappy disease I am living with.

Not to be a downer, sorry. But you might talk to your primary care doctor about your joints, inflammation, and weakness. Even if your rheumatoid factor numbers are low, it is still possible to have RA. That's the way mine works - seronegative.

Just sounds like a referral to a rheumatologist might be a good idea. I hope that you are feeling better real soon.

Suz

5/10/10 7:42am

Hi - Thanks Lisa - You're not being a downer - It's good to be able to talk to people who have been there. As much as i understand my friend is trying to put a "positive spin on things" or keep it light as my husband tells me, it does't help when I am opening up to feel dismissed in my concerns. I really never speak to her about any of this and she never asks me how i'm doing. I get it tho - She is just a person who is unconfortable with it and not really knowing what to say. So usually i advoid discussing anything with her. But saw her the day my hands were completely red and inflammed and yes it was freaking me out.

The redness has subsibed a bit today but hands are still weak and the bone that popped out is still there...I have a feeeling it is there to stay now. I am taking your advise and calling the promary care - this was around the time of year m first flare cropped up - so maybe wit seasonal changes etc, the inflamations run amock. I know you get this peice of it too - the bummer is my hands are my way to play music and they're too weak to do much of that right now.

thanks for writing - hope today is a good one for you

Suz

Hollyk

5/13/10 11:01am

Hi Suz! It seems strange to me that when patients with lesions are not given diagnosis; but I know the routine and criteria; it just seems asinine to me. Once the lesions are seen; along with the clinical symptoms; that should solidify it; unfortunately that is not the way it is.

I am like you in that I am stuck in limbo. I have undergone every test you can think of with no results of an answer; meanwhile, I deteriorate away. My mother has MS and I am following, almost identically, her disease pattern. It took a long time for her diagnosis; but only because she waited to get looked at.

It is very frustrating, as you said, when new symptoms come along and we don't know what they belong to. You can have multiple diseases; but some diseases seem to populate more easily with MS.

Family and friends can be the worst at understanding and being sympathetic of our condition. Especially if they are used to you "doing it all". Words like "you don't look sick; everyone feels that way; that's just a part of getting old..." are very hurtful and show a lack of knowledge on the other persons part. Having MS doesn't provide us with patience however and it is usually just the opposite.

I pray that you get your answers soon.

Suz

5/14/10 9:33am

Hi Holly!! as crappy as it can be for both of us to be in this "land" thank you for your words and understanding. I've most recently been thinking of it almost as a video game at times. Entering new worlds to get through daily. for exmple - the land of ambiguity, the land of fatigue, the land of weird pains, the land of frustration - and using "superpowers" to make it through them. one is laughing (Thank god i live with a person who is an undiscovered comedian).

I so agree with you about peoples statements - last night my best friend fro mcollege is visiting - haven't seen her in a couple years - she said you're not sick and your brain will heal. I don't even know what brought the statement on because i wasn't talking about it.

I know she comes from a place of wanting to will it to be so and help me to just snap out of it so to speak - i can't tell you how many times i've said to myself - "just SNAP out of it - you're alright and you are not going through this". I work on positvie thinking, i've altered my diet, I take my supplements, i've cut my stress level, I listen to my body and rest when I need, I move and walk and exersize when i can.- even push myself to test it all out. But i'm still here experiencing enw things more often than not. It feels good to do all of these things for myself to try and help, but i'm still here. So onto the land of acceptance. it is what it is and do the best i can. if i don't say that i'll make myself so upset, so i can't go there.

I really am a happy person, even if my body doesn't always cooperate. I think that fact throws people off - they think I can't be sick if I'm laughing and happy right? it's been two years since this really changed things for me - what am i going to do? - curl up in misery and cave? - not a chance. so they'll say what they say - i'll smile and say uhhuh and be grateful for the people who understand.

the lack of diagnosis? i know! it shouldn't be this difficult as we struggle and try to figure it all out - but it's so good to have a glimmer from people who get it even tho I wish you didn't have to go through it either.

sorry - i just really RAMBLED on didn't i?

Thanks Holly and i'm sending good thoughts your way

hoping today is a good one for you...

Suz

lara

5/23/10 9:05pm

thank you for writing from the land of limbo.

Why is it that an definitive answer is so darned important?

i've had this disease since 2003. it has progressed very slowly, thankfully.

one symptom at a time, until now, when i have an attack, i have what i call a whole chinese menu of symptoms to choose from. and every six months or so, a new one to add to the list...

and no lesions at all.

so limboland.

I do have a dx of a "central demyelinating disease of unknown origin" based on my clinical exam and optic problems. and every time i see a pcp at the walk in, they listen to me describe my problems and interrupt me to ask "what i'm doing about my MS".

well. nothing, because with out that definitive label, i could go suck an egg. i do take meds for spasticity....and will walk with a cane sometimes.

one of my daughters is experiencing what clearly is neuro symptoms, and has a lesion on her thoracic mri......

i'm trying to just accept it. and then alternate between the idea of finding a new doc and starting all over.

i agree, it's easy to lump problems under the umbrella of neuro/ms, but then you slip thru the cracks. I'd get it checked out.

hope you feel better!

lara

Suz

6/ 1/10 8:02am

HI Lara...Thanks for responding - hope you had a good week/end.

it's been a bit nuts this week ....and i'm so wiped out...everything kind of aches...joints flaring again - have GP appt end of week but have to cancel - boss going away and need to work friday - i don't understand what the hold up is for dxing people when all else has been ruled out, but just come to accept that that's what it is and where i am right now. i've done second opinions and think if i went somewhere else they might say something different. since i'm on hold in limbo i have to take a more holistic approach at this time. MY DOC had tod me when you feel bad enough come in and we'll talk more about interferons. i haven't felt good in so long so don't really know how to guag ethat statement - i'm a happy grateful for the good things - but the body?? that's a different story.

if you have central demyelation do you have lesions? i don't know what that means in the ambiguity of all of this...

hope today is good and thanks again..

all my best - Suz

Lara

6/ 1/10 9:32pm

thanks for listening Suz. I hope you are recuperating from aches and work. Ha! as if!

I don't have lesions. that's why i have a dx of central demyelinating disease of unknown eitiology....

Neuro spent 10 minutes explaining recently about MRI Tesla 7 machine, "which took a look at someone with lesions, and the results would blow your socks off!"

In other words the standard mri machines are Tesla 1, 2,3 and this t7 machine really shows the damage. but there is only one in country....sooooo

I kinda validated what he has always said to me, "just because your mri is normal doesn't mean there isn't a problem.

I hope you get insight from your doc about the achy joints.

I hear you about work. It takes it's toll, i had to work on saturday too, ugh.

Feel better. Let us all know what the dr says.

take care,

Lara

Suz

6/ 2/10 7:56am

WOW - I had no idea it went to 7. I've done the standard MRI's and then most recently did the tesla 2 i think it was. That's really wild - I had no idea there was stronger one. So onto more ambiguity of it all right?!? I wish you could get a good picture on the big one! I have heard alot of people say what your doc said - just because no lesions doesn't necessarily mean no MS. Also with lesions apparantly it doesn't necessarily mean you HAVE MS. Clear as mud right?

Thanks for the info !

Suz

Dan

6/ 2/10 12:15pm

I don't have any lesions either. I have only been tested on an older machine though. One neuro called it gbs the other (from the same office who actually did the emg) said "emg shows no gbs or diabetic problems (i am a diabetic also) In my opinion it is PPMS". But there is no official diagnosis so I am not on any meds for symptoms. I can barely walk, or even type any longer. When I wake in the morning I feel so much better. After an hour or so of moving around I feel the symptoms worsening. Even though they were there when I woke up they were bare-able. This has been going on for 3 months. Anyone ever have tongue or mouth go numb? I hate that!

Dan

lara

6/ 2/10 8:44pm

never had a numb mouth! that must be really uncomfortable.

I'm sorry you are in limbo too. there are so many here. I know the feeling of not getting meds to stop it, and at the same time, i'm very very sensitive to meds of any kind, and i don't know that i would take them anyway.

do you take meds for spasticity? i take baclofen and zanaflex. i take lots of vitamins to help with the fatigue, and injects of b12 too.

feel better!

hang in there.

lara

Suz

6/ 3/10 8:32am

Hi -I haven't experienced the numb mouth either -That's got to be frustrating i'm sure...But i do understand the walking and typing - for me it was just not energy. felt like walking thru mud and had zero energy in the beginning other than to lay down.

Lara, I take the vit and vit D supp too. I've found that it does help with my energy level... I've been reading so much re: diet. I'm not one of those that will preach beause i am far from perfect - but most recently I've been reading about Lectins found in dairy, gluten, legumes, nightshades, soy..Pretty interesting stuff if your body is sensitve to those things (personally mine is from allergy tests i did years ago)...my skin reacted to tomatos, peas, eggs, dairy, etc etc- I could never find the link between these things until recently- I found some diets didn't quite go far enough for what made my body inflammed. so i was shut out with alot of recipes... So i'm looking into some that address these intolerances as well.

when you feel crappy enough and aren't to the point of taking meds, you have too keep searching. I wish we weren't in this strange limbo, but it's good to be able to have a place to discuss with others so you don't feel alone.

bye for now and hope you guys feel well today

Suz

the land of limbo...

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