SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
There's nothing wrong with me
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
521 members
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There's nothing wrong with me

Hi and thanks for setting up this site.  Feel a bit of a fraud on other sites when 'there's nothing wrong with me'.

I went to the Doc's in June as I couldn't walk properly, had weakness in my left side, trouble with speach and headaches, in fact I thought I may have had a stroke.  Doc's first question to me was ' have you thought it might be MS'..... was he joking, who would ever think thay had MS.  

Had Neuro tests and told by him that he doesn't think it's MS as no leison's....so discharged.

Symptoms have been the above and joint pain/swelling, poor balance, cronic (chronic) fatigue, pin's and needles and now a very strange vibration.

So, I suppose my question should be, what the hell is wrong with me??????????
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10 Comments
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welcome..you are in the right place and will fit in well here.  I have really enjoyed the support I receive here and I hope you will too.

have you seen a neurologist or a rheumatologist?  If not, you may want to ask for a referral.  If you have and they have just "quit" on you, then you need to find a new one willing to fight for a diagnosis for you.

I have somwhat similar symptoms and am awaiting test results from blood tests and MRI.

has anyone mentioned chronic Fatigue Syndrome or Fibromyalgia as a posibility?

Kristin
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Thanks for the reply.  My Doc is now trying to treat me for depression. Told me I need to re address my work life and look to go part time, how this will help me I have no idea.  Less time at work would be great but who can afford that in these times!!!!

Going to go back on Friday and push for them to start all tests on me again.  Worst part is not having a diagnosis as people think there is nothing wrong with you, and doesn't help that I have a very crappy boss.  Able to stand up for myself, so that's not a problem, just need to know.


Linda
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oh this makes me so annoyed--yet another person being treated for depression instead of having the doctor get to the root of the problem.  who wouldn't be depressed after experiencing the kind of symptoms you, and most of the rest of us, have been dealing with for months, or in some cases, *years*?

drives me batty!

at any rate, there's my rant for the day.  i am sorry for the reasons you are here, but welcome to limboland, linda.  just keep up the good work advocating for yourself and eventually you will find your way out, i know it.

best wishes,
binx
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Hello,

I know how frustrated you must feel..my doc was initially stuck on the fact that it was my migraines causing my symptoms only my symptoms have been since July 2009 (what a migraine huh?) Initially I wanted to dump him but requested as nicely as possible that he continue testing...so far we have improved our relationship and I feel like he is taking me more seriously....

Please stick around here...I have found such comfort and support from the members on this forum as i am going through my limbo-rollarcoaster ride of symptoms and tests... This is a great place to chat, vent and be listened too (when noone else will)

You will get there!!!! Don't give up on yourself!

Be Well
JibJen
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Welcome wildirish!

You know, the first thing I thought as I read your intro was 'Bet she's in the UK'.

The way they've treated you appears to be typical. We have commitTed the most heinous offence of being female and 'of a certain age'.

The remedy for which is obviously anti-depressants...NOT!!

But keep on plugging away at your GP. Change GP even. You will eventually get proper tests and answers. I've seen two NHS neurologists and dismissed both. One of them told me - and a room full of witnesses - that '4 out of 5 presentations are a mystery' to him. (And the NHS pays him how much...?)

Just a thought - the strange vibration you mention seems often to be caused by nerve injury/damage/impingement. That is, it's not something that your mind can easily do!

All sympathy to you. I (and most of the rest of us here) know the anguish and difficulty of having something wrong and yet not being able to give family, friends and bosses an acceptable, understandable label.

Keep us posted
bestest
samx
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I was treated for anxiety and get this...Attention Deficit Disorder (I know longer see that Dr.)!  HA!  Then anxiety again and now I am also having the tingling, buzzing and burning nerve pain.  I keep getting asked, Are you just doing too much?  Well, yes, I am.  I have a 2 year old and a four year old and I am an education major and my husband works all the time and is not helpful when he is home, so Yes, yes I am probably doing a lot, but that doesn't mean that is what's causing all of my symptoms.

sorry for the rant, I had a bad day.  I don't want to scare off new members!  Just as Sam has said, we all understand what you are going through and this is a safe place to rant!


Kristin
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Hello & Welcome,

Your symptoms are very simular to mine.
I have been in Limbo Land for about a year and have run the guantlet of doctors and tests. As many of us have on here. When all my weirdness started I was told that I had anxiety and anorexia.
I am glad that you found us but also saddened by it.
Please Take Care, Theresa
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You certainly are not alone with all that has happened to you.  Have you checked out the MS forum?  You'll find lots more people there with similar stories...me included.  The frustration of it all is hard to bear some days.  Personally, I find relief in venting etc. on that forum and this one.  People understand what we feel and the suggestions and support are so incredibly good.  I hope you will lean on all of us as we care.  Hugs, Charley.
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Hi,
I am another who can totally symapthise so you see you are not alone!
My problems started whilst working  in a busy office job and my doctor (once the blood tests returned normal) keptsaying it was due to stress and was trying to blame depression ( she knew I was divorced with two children)  As I kept telling everyone I was beginning to feel depressed because my symptoms meant I couldnt function as I wanted to!!! I makes me so mad when I think back.
I too had a rotton boss and felt so ill just decided to quit my job and took months off at home to recover - then still getting recurring bouts of symptoms my doctor finally said "well this cant be due to stress now, it could be MS"
I too went through all the anxiety of worrying about MS and waiting for my scan. When the one brain scan came back with no lesions I was discarded to get on with it! My doc often not available so saw others and none of them were helpful and looked perplexed. It makes me so angry because if anything can cause depression it is the way you are treated! I was reluctant to even see my doc and tried to get on with it but symptoms too much and went back. demanded to go to a pain clinic to see what they had to offer but of course it wasnt be a diagnosis!! Am still working through this and trying to avoid meds.
Try to hang on in there and keep strong! I regret quitting my job because it has been hell finding part time work where I live and huge cost financially.I cant give much advice other than that for now
Victoria
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Ugh, I hate doctors who blame physical symptoms on depression/stress/etc. Yes, depression and stress can make our symptoms worse, but I firmly believe we get depressed and stressed out *because of* the symptoms, not the other way around!

Years ago, when I was still a mostly healthy youngster in college, a doctor constantly told me the reason I got sick was because I was "doing too much." Uh, well, I do believe that overdoing things can lower our immune systems in general, but I was very prone to bronchitis/pneumonia in those days, and that is *not* something that happens because you're stressed!

If that happened to me now, I'd fire the doctor. Back then, I was not self-confident enough to stand up for myself or go find another doctor.

Anyway, welcome to the group! And I also encourage you to check out the MS group here as well. It's a fabulous resource with a bunch of wonderful, empathetic people who will offer support, advice and information whether MS is likely or unlikely as a diagnosis for you. They're wonderful. Kinda like the people here. :-)

Hang in there!
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