still in limbo

[thepeanuts]

Hello everyone, it only took reading a couple posts to get the feeling this is a good place for me and what I'm dealing with. The patience and kindness you show one another is what took me out of my comfort zone of just observing and into participating as well. I am at that point of just wanting to crawl under a rock and never come back out. Countless doctor appts and inconclusive test results. It seems so obvious from my symptoms and the research I have done that I need tested for MS. I started with leg cramping, twitching about 3 years ago. That has progressed to a full serving of debilitating pain with a side of I hate my life right now and the doctors who refuse to look beyond the obvious. I hurt from the base of my skull down my entire right side to my toes. The pain is hard to describe because it seems to take on many forms. It burns, it aches, it throbs but yet its tingly and half-numb too. The neurologist looked at me today as if I had 3 heads. He told me he doesn't believe my condition is nerve related but I should increase my Lyrica, really?? I'm tired, I'm frustrated, I'm terrified, I'm angry and I feel like I'm seriously losing my life in every sense of the word. What am I supposed to do?? I know something is very wrong but I am at the mercy of doctors that give up when the tests they choose to run don't show what they were looking for. I wish they would take a second look and maybe see what they weren't looking for. I have been practically begging the doctors not to give up and now I feel like doing just that. I am so lost and hurting.  

[addicted2harleys]

I knew i forgot something (that is gettingvmore and more common with me!  Lol).  

If you could add some spaces in your post that would be great.  A lot of members have vision problems and it makes it hard to read one big long paragraph.  Look at the way the replies are here...see how there are spaces?

It makes it easier to read.  :) Thanks!
Addi

[addicted2harleys]

What gets me confused is your doc says he doesn't believe your condition is nerve related, yet he increased your Lyrica.  

Ummm....isn't Lyrica for NERVE PAIN?

Is this a neurologist?  You mention doctors a lot, but not what kind of doctors are you seeing?

You also mention inconclusive tests.  What tests have you had done on you?

I understand about crawling under a rock.  Don't do that!  Lol. Stay here.  When I first found this forum I felt like I was on one of those maze puzzles where there are numerous ways you can turn but a lot of the trails deadended and I couldn't seem to find the one that lead somewhere.  Does that make sense?

This forum guided me to the right path and made me understand what steps I needed to take and why.  It gave me strength, hope and balance.  No, I am not dx'ed yet.   But I am on the right path.

So, welcome.  Take a look at our health pages, too, if you haven't already.  The link is up in the right hand corner.

Oh yeah, I almost forgot.  If you do not trust your doctor, no matter what kind he is, getvanother one.  You have that right to do so.  

Addi

[RazCarver]

hey, the "inconclusive test results" can really get you down. It's ok to stay in that place for a bit but don't unpack. ok?  We fall down, we get up and keep on going some how. mostly because there are no answers under the rocks either. our symptoms will push us on to keep looking for the answers.

I don't really have any answers either. just wanted you to know you aren't alone.

Raz

[MrsAristotle]

Hi I feel for you, its been 5 years this year for me and I have had POSITIVE MS tests still no diagnosis.

You have to believe in yourself you know there is something wrong.

The problem with MS is does mimic a lot of other diseases and now the doctors are keen to tell everyone and anyone who doesnt have stuff on the tests that they have M.E. or fibromyalgia.

Also the problem with early onset MS is even MRI tests can be negative.

I dont think even with advances in medicine that we have the technology to diagnose this disease easily.

You get told if you have the MRI on a T1 machine then it will probably not show up, and most of the machines in the UK they use the old T1 machines so what is the point.

You get told that using dye enhancement could show up leaks BUT you can have 24 patients in a room, and do a test every hour and get negatives before you finally might get one that shows anything...........

Lesions like to play that game HIDE AND SEEK......

Now I have been told all of this by my uncle in Italy who is a radiologist.

You get a Lumbur Puncture and even with lots of O Bands your blood test comes with inflammation so this is classed as a negative for MS, BUT the inflammation could be there because there are 2 things going on...........

You get a test and positive for bilateral Optical Neuritis 85percent of people with MS have this.....but the findings are ignored.....

MS stands for some MEDICs SUCK lol........sorry but so far I have not had a very good journey.

Anyway you have to keep going but dont get too stressed as the stress makes it worse and anger is a wasted emotion I have been there done that. I have a group for limbo landers and there are people going in there everyday with your symptoms not getting anywhere.

The more you push for MS the more they say your anxious....

One doctor said to me Oh I suppose you have googled your symptoms and I said no why have you? lol.

I think there could be a new illness in town and I wouldnt be surprised in the next decade to find that the medics finally realise this, as there are just too many people sick with the same things........

How I cope is I keep positive, busy, look after my health, walk as much as I can and keep mobile......IF I stopped now I know I would loose.

IF it is MS anyway there isnt much they can do just make your journey more comfortable and if you are already on Lyrica that is the one thing they offer you anyway.

I understand the pain believe me its a nightmare. Thats why I spend a lot of my time on my computer playing games and talking to people as it helps me focus on something else.

Big hugs. Mariax