SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
food for thought
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
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food for thought

Hello all.  I read this over on the MS forum and I thought I'd share and get thoughts from everyone here.  This is just a piece of the post that I pulled out because after reading it, I thought about it for the last few days.

At what point in this journey do you just throw in the towel and give up?  Has anyone gotten to that point?  It seems that whenever someone gets to this point, we take a little break, pick up the pieces, and press on.  We also find support on this forum.

I can answer a little about this myself.  I feel like I've given up on receiving a dx.  Although I was sorta dx'd now, with my current doctor collaborating with my neuro, but my dx didn't come from a neuro in a face to face visit.  I feel that over the last few months, I don't care anymore.  What I DO care about is symptom management and having someone I can turn to when something new flares up.  And I think I have found the right doctor for me.

When all this began for me, that is all I was searching for in the first place really.  Symptom management.  And I guess I wanted them to figure out what was wrong with me so they could fix it and I could go on with my life.  Then, things started getting really rocky being sent to this doctor, then this specialist, then the next, etc.

I just feel like I am way too tired to keep up the fight and if I found a good doctor who is willing to treat my symptoms, that's good enough for me.

What about anyone else?
Hope everyone is doing well!
Love and hugs,
Sarah  
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9 Comments
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551343_tn?1350880995
PART 1.


I have given up. I am sick of going to see the GP with really bad things going on for her to just look at me and sigh and say she was so sorry they couldn’t give me an answer or a diagnosis, but sometimes this happens.

I have realised reading copious amounts of stuff about neurological disorders, and other ones too that not even the neurologists are really savvy on the area that they specialise in.

IF it is a classic disorder that can be seen and has all the right symptoms they can tick off then they can give you an answer.

IF it is like a illness that would be a script in HOUSE THE US medical show then we are doomed.....

I have worked it out for myself. When you miss a diagnosis by about 1percent then you know what you have.

Even if you take a car for full mechanical check things can get missed even with the most vigilant of mechanics. Cars have been driven out of garages only to crash because someone missed that there was a leak in the brake pipe...I know that happened to a friend.

Its all the testing that does my head in and why i have given up because like the mechanic things can get missed or even misinterpreted.

For examples...(get a cup of coffee and a fag this might be a long post lol).

I had a VEP test. I finally saw the results AFTER i had paid to have my medical notes. IT CLEARLY STATED THAT I HAD BILATERAL OPITICAL NEURITIS, that means in both eyes. The left eye the range was HIGH enough to be given a diagnosis of MS........I did not know that was not told that. When i challenged my neuro he said oh did you have ON....then he has to read all my notes and looks up sheepish and said oh yes it was confirmed. Now 75-90 percent of people with MS have ON lol, what are the odds............This was the attack in 1999 when I went blind TWICE and had terrible eye pain and burning for about 6months and loss of balance.

Then lets look at my MRIS

1st MRI of brain paid for by me in October 2006. It was found a large cluster of high signal foci in the deep white matter of my brain. Thought not to be demylinating by the radiologist but my age as i was born in 1951. (Since then i have found from my uncle in Italy who is a radiologist that this is basically CARP because age foci are not high signal and would never show in the deep white matter of the brain.......................).

Then a few spinal MRI;s with insignificant lesions. (INSIGNIFICANT but why were they there).

Every radiologist reads MRI's differently.

For example on one of mine the radiologist saw a large lesion on my spinal cord which warranted me to have an enhanced MRI with dye as they believed the brain barrier had been breached.

SO off i trot for my MRI with dye enhanced. It came back inconclusive. Now since then I have done my research and spoke to my uncle who told me that you could take 10 people and give them an MRI with dye every day for a week, and never see anything. Then 1 of the 10 would finally show something perhaps on the 4th day lol. So it is again another test which is so hit and miss it makes you wonder if it is worth having one because the dye they use can cause more problems for your health.

Anyway my neuro saw the original lesion too. He told me. Then my case files were discussed in a meeting and 2 of the other neurologists felt the lesion was just an ARC, something on the film, so again I missed out on a diagnosis, even though my neurologist was convinced it was a lesion and in the right place for MS.

HOWEVER, they then found surprise surprise another lesion on another MRI but i had been told there was non.....infact it was two. One on my c5 and the other around T1 i think. I only found out AGAIN because I bought my notes.

Then I went for a lumbur puncture. So excited perhaps i would get an answer to what it was.

I get told although there were lots of Ogliconal Bands in my CSF which on their own would have given me a diagnosis my blood test taken at the same time showed inflammation so this is classed as negative for MS, even though with all the other clincial signs i could still have been diagnosed with it. I asked my neurologist could the inflammation in my blood test just be a red herring because even he thinks I have TWO disorders going on…

So what next OH YES A SECOND OPINION.

Waste of time and money. He said my symptoms were not classic MS and thought it could be a bit of CSF...I wont tell you what I said it was rude. He said the lesions could all be contributed to my age, and the ON was just a coincidence.

I said to him my first attack was in 1980 when I woke up with a dead left arm, and pins and needles which went on for about 6 months. Then resolved itself.

So Mr NEUROLOGIST MY SECOND OPINION TURNED around and told me it could never be MS if it started way back in 1980 MS does not do that.............well so much for him being an expert because it DOES DO THAT.......

I think i had it from 1980 and each event was a relapse. Then it went into remission for several years and I think my dads death in 1997 was what the triggers was to start it off again.

So anyway going back to when did you just give up....

When I had my second opinion and when I realised that my age was just against me anyway.

Now I am specialist free............i dont care so much as to be honest if i have PPMS then there is nothing they can do for me anyway.

It always strikes me as odd that my neurologist was more than happy to offer me I.V. steroids and even I had a bone density scan and to have a 3 day stay in the MS centre....yet he couldnt tell me I had MS.

Now i just read and read for others. I think i have more knowledge then that lot anyway lol.

Even if i found a doctor who was willing to listen or give me a diagnosis would it change who i am? NO. It might make my family take me more seriously if i have a label but that is all that would change.

I found my health was more compromised going to tests and doctor visits then if i just stopped.

I do get fed up and angry at times but that is no good for me so I try to relax and just get on with it.

Sorry this is so long I needed to vent this morning lol...my hubby is driving me bonkers lol and sometimes it is good to type it all down it is like a good purge lol.

Big hugs.xxxx

oh i HAVE put a part 2...which is my timeline if your interested to read it.
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551343_tn?1350880995
PART 2. SKIP if you dont want to read.

This is my timeline.


in 1980 when I woke up with a dead left arm, and pins and needles which went on for about 6 months. Then resolved itself.

Then in 1981 I had terrible pain in my right leg and pins and needles which was thought to be sciatica even though nothing showed on the xrays for sciatica. The pain was relentless and lasted about 6 months.

When i came back from Kenya in 1982 i had another attack of myalgia and pins and needles and terrible fatigue. It was thought I might have brucellosis but the tests came back negative.

The attack resolved itself. Then from about 1982 I just had odd things, water infections, pains in odd places lol but nothing significant.

Then in 1999 I went blind twice once on holiday and once at home. GP said it could be low blood pressure or the heat. He didn’t even bother checking my eyes. The doctor in Brazil did check my eyes and said no stroke but I must see my doctor when I got home. Well that was a waste of time lol.

In 2002 (i think) I had another attack. I had major vertigo attack and really bad UTI which would not resolve itself. I was off work for about 6 months. I had terrible fatigue and total weakness, could just about crawl off the sofa to eat anything.

In 2005 October I had another really bad bout of UTI and lots of odd things all that year, pins and needles in my legs, balance off, terrible tiredness.

February 2006 i had to cancel a holiday to Malta because again i had really bad urinary problems. I saw a urologist who did a flow test and said my flow rate was nearly non existant and i should see a NEUROLOGIST.

In May 2006 things started in ernest. I was having to ring my PA to ask her to drive me to work because my legs were weak, and i had terrible pins and needles. I had burning all across my stomach for 2 days thought i was going to burn to death...then burning in my legs started.

Everyday from May there would be something new. I know I had the hug twice at least because my GP thought I had shingles but then said it was nerves….

Then that year we had a really hot summer my office was 30degrees and my symptoms just got worse and worse and my staff would find me asleep on the desk at 3pm overcome with fatigued and pain.

Then September 2006 11th, i couldnt get out of bed and the rest is history.
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1475492_tn?1332887767
Sarah,

I haven't given up. I don't think I will either. It's not in my personality make-up to be at peace with it - I have this philosophy of "living without regret." This means I really try to avoid looking in the rear view mirror and thinking "I shoulda ... "

I try to make decisions that will prevent the "I regret not..." so I tend to speak what is in my heart and soul. I tell people my concerns, my care, my love... and I try to always not hold back in doing some things that push against me.

This is one of them...I can't see myself saying in the future "Wow, I shouldn't have wasted time getting a 2nd or 3rd opinion on whatever this is." but I could see myself saying in the future "Wow, I should made that appointment and see if someone else has something to help me."

I know it's tiring. I know it's confusing. I just can't see how throwing in the towel will be best for myself long term - that said, enjoying the peace between appointments I'm okay with but I will continue with following up until I have a reasonable answer.
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551343_tn?1350880995
You have a great attitude.

I was like that about 3 years ago but this is my 6th year now and I am going to be 61 this year hopefully and thank god I got to be this age.

Any more time i am given on this earth is a privilege for me and time I can spend with my family watching them grow upl

I decided I was not going to waste it any longer on chasing rainbows.

It takes such a toll on me maybe it is my age now.

I havent given up my life, I have just given up being treated like an idiot lol.

Like I say you have a wonderful attitude and long may it last and I hope and prayer that you do get answers soon, ALL of you. You are all good and kind people and deserve to have peace in your life.

xxxxx Maria
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956292_tn?1334058469
Hi-

I am glad I did not give up and although it took me a bit to go for 2nd opinion..I am soooooooo happy..just look where I am verses a year ago..A doctor that is actaully caring for me....

It is hard to keep up and can be frustrating and sometimes a break is needed but never give up!!!!!

You will find a doc that is wiling to go the journey with you.

Jibs

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Avatar_f_tn
hello,

in moments of utter despair, i do give up, but something keeps pushing me to keep trying to find the answer(s).

i am guardedly pursuing neurotoxic illness treatment at present...slowly, step by step.  i am trying not to get attached to it or expect miracles.  if this doesn't pan out, then i will probably vow to never darken the doorway of another doctor as long as i live.

and then i'll probably change my mind, like a true libra.

blessings,
binx

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1917408_tn?1329427500
I can see each of your points. I am new to this quest for answers for my own health issues, but have been through similar issues with my husband and my dad: lots of tests, doctor appointments and bills , and attitude (it seems like Neurology attracts some very rude doctors!) and very few answers.

I don't plan to give up if there are unexplored avenues, but I don't want to meet Einstein's criteria of insanity either, repeating the same things over and over and expecting different results.

I am still new enough to these issues that I have to admit that I DO have my hopes up about the possibility of finding out that this will be something treatable that will allow my life to go back to normal. Maybe I am still lingering in the 'Denial' phase :)

Valerie
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1627868_tn?1333889942
Thank you guys for all your replies.  I didn't post this to "stir the pot" if you will.  I just thought it was interesting to see someone else say this; when do you throw in the towel?

As I was reading through the post on the other forum, I saw a mix of responses.  Obviously a lot of people on the MS forum are diagnosed.  But even still, I read about how many people took soooo long to get a dx.  I also read that some have given up even though they are dx'd.  Some feel that even though they received a dx, nothing has changed.  They are still treated the same by the medical community.  Some don't get the help they need or deserve even though they have a positive dx.

I guess I don't really know why I found this post so interesting.  Maybe because each person's response gives you a little glimpse into a person's reality.  Like Sidesteps, you seem like a definate fighter.  And Jibby, well you are soooo close to a dx.  And Maria, you have been through so much and should have a positve dx.  If I were you, I could see myself getting bitter.  But you seem just the opposite.  You come here and give of yourself to others you find themselves in the same situation.  We all do!  And Valerie, you are newer to this "walk" in life and you sound like you have a drive to find out what's wrong.  I have lost that somewhere along the way.

Anyhoo, thanks to you all for responding to this.  If you get time and you feel so inclinded, go over to the MS forum and look at the post.  
Love and hugs!!!
Sarah
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1530171_tn?1362547225
Well,well!
I often wondered, at what point a dx no longer represents any real value
to the sufferer, or the label pursuit becomes itself a purposeless feat.
Because honestly, any medical condition that happens to be so complicated to diagnose, in most cases, at best, gets medically "managed" or given a "trash can" label for convenience or b/c of ignorance
incompetence or protocol. You deserve better, of course.

I threw in the towel long time ago, when my a Neuro/Pain specialist
questioned MY sanity, as he could not find anything wrong with me.
He gave the standard Idiopathic/Delusional possibility and wanted to refer me to a Psychiatrist. I told him that he couldn't diagnose boiled eggs,
I refused to pay my bill, as he had lost my test results once and mixed up my records twice and now he wants me to see a psyche doctor and I suggested to him that his loss would be astronomically higher if he demanded payment. And he didn't. My mistrust in Doctors and the medical system had reached a climax.
That's where I turned the page.
Long story short, I decided to study NOT medicine, but Health for the rest of my life. lol! Holistic,Alternative, Natural.
I sat with shamans,  healers, mediums etc- from both sides of my grandparents there were traditional healers, psychics and I must have had the gene in me as I was so connected to all this so naturally. My life was changing as my knowledge increased- for the better! No more limboland!
Still some anxiety issues and some pain, but manageable.
A near death experience from a horrific car accident, triggered something very deep inside of me. I had been enriched with Awareness!
The symptoms lessened, as everything I did was just the right thing.
The New Age movement and Eastern Philosophies had influenced me
a lot also. I made friends with everything including pain, creepy insects
lol! but seriously, this was a total transformation. Meditation would be my
compass, as I could connect with anything. And the answers would come
easily. Not always, but most of the time.
The deal for me was though, that I would share knowledge and help people in any capacity I could. It suited me just fine! That expressed ME!
And that's how I'm here today. The Neuro/Pain Specialist was in my path for a reason. My accident happened for a reason. The driver of the car
who was responsible for the accident was shocked when I told him
that I had no interest to see him punished. It was an error of judgement,
my life was spared (by some divine intervention),  and the case never went to court.
Everyone of you, you're taking a certain Path in your life.
Events, disease, sadness, joy, love, hate, doctors.. it's a mixed bag,all on the Path.
Find the meaning, learn lessons, listen to your Soul and your Spirit and move forward.
Dx or no Dx,all the same. It's on the Path.
God Bless. Love and hugs.
Niko


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