SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Hello - New and nervous!
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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Hello - New and nervous!

Hi all

I tried to post in the 'introduction' section a few days ago, but it doesn't seem to have worked. But not a lot is working right now (LOL) so it's probably just me.

About a year ago I started having symptoms (numbness, pins and needles, severe gait ataxia, eye pain, brain fog, facial twitching, halting speech as I tried to find words etc.).  On testing, I was found to have a clear MRI (brain and cervical spine), and a b12 and vitamin D deficiency.  The most noticeable symptom (gait ataxia) came and went sporadically and spontaneously for about 7 months. The other symptoms died off after a few months of b12 injections, with the exception of the eye pain (ophthalmologist tested me and gave me the all-clear). Nerve conduction tests on my legs, and basic reflex tests showed that my reflexes were strong.  General consensus between my neuro and GP was that there is nothing they could do for me, as it was all a result of the b12 deficiency (all other tests having come back negative for multiple myeloma, heavy metal toxicity, syphilis etc).

For the past four months I've been absolutely fine, I've started studying, and I've been recommended for a promotion at work. Then suddenly it's all come back, but this time also with extreme dizziness.  During the first episode I could still go to work, but the dizziness is really affecting me this time around. My b12 has been good for months now.  My old GP has moved on, but new one has referred me for a new MRI, and to a different neuro.  I'm fully expecting the new (and very expensive!) scans are going to come back clear, and to be told again that there's nothing to be done.

Does anyone have any suggestions for things I should get tested on?  I think I was tested for Lyme disease but I can't seem to find the test results in my ever-expanding file.

Thanks to all reading this!
3 Comments
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Hi LilScout.
Welcome to our intimate little group.
It's like a family here and in a short time
you too will feel "related" to the rest of us-Lol!

Accurate Testing for Lymes in Australia has been a challenge to say the least! I've communicated with some Aussie friends about this and indeed,
that was the consensus.
Do you have the equivalent of an LLMD  (Lyme Literate Medical Doctor) designation -not an official designation- in Australia?
It seems that sufferers here in N.America, can be stuck on the medical Merry-Go-Round in Limboland forever! if they have a Lyme and Company
(Co-infections that usually accompany the Bb infection) Infection,
UNLESS they deal with an LLMD and get the testing done at IGeneX Labs
Any approach outside this, usually leads to either NO dx or misdiagnosis
which is worse!

I'll post again , as I'm still at work now and I've been very busy lately!
So hang in there, ask any questions you want-I'm quite resourceful
and so are some other members- and very supportive if I may add.
Just give them some time and they'll respond!

Cheers!
Niko

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Hi lil scout,

I wanted to post to tell you not to give up on answers many of your sxs sound like what I have gone through. The dizzy spells are some of the hardest things to go through. I had one at work not to long back and burnt myself really bad. I have learned to take a step back from what I am doing to refocus now. Sometimes that's hard to though.

As Niko pointed out sometimes a lymes dxs is hard to get. After I have been stuck in limbo land for four years, I now feel I may have lymes. In fact I am almost positive I do. Now I am just trying to get to the answers that I seek. You should maybe visit the lymes forum they are very wonderful and kind hearted people. The know so much about lymes and cam pointYpu in the right direction. As for other test and things to look into I am not really sure.

I know my journey as been full of test for ms lupus and fibro. None of them came out positive. I too was dxs with a severe B12 defiency but since then have gotten in under control. Just dont give up is the best advice i can give. I will be praying you find answers soon.

God is truly our greatest healer. So you shall be healed this I know. May God bless you,

Kimberly
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Hi Niko & Kimberly,

Thanks so much for replying - there really seems to be a wealth of experience here on the forums for which I'm so, so appreciative.

I've had my best experience so far this week, since this condition came on a year ago.  As expected, my scans came back 'normal', and my symptoms were mild on the afternoon that I saw the new (third so far in this journey) neuro.  

What was different about this neuro, is that while he didn't know what caused my symptoms, he didn't just then dismiss them as having a 'probably psychological' cause (first neuro) or not try anything because I didn't fit a standard diagnosis (second neuro).

This guy basically said 'I don't know what you have, but the symptoms are very similar to a few different genetic disorders out there.  Rather than send you for a bunch of gene tests, which will probably come back negative, why don't we just try you on one of the medications that works for one of those disorders in the first instance, then meet back here in a few weeks and see if we need to try something different'.

He prescribed acetazolamide, an altitude sickness medication, also used to control genetic episodic ataxia.  I've taken it for four days now and my gait has returned to normal :-)

I'm over the 'YIPPPPPPPEEEEEEE' stage, and now back to cautiously optimistic.  Only time will tell if this has resolved my problem in the short term, and what the effects will be of taking this medication daily in the long term.  Oh - and of course, we still don't know what causes it, and whether it will prevent a further attack, or just reduce their severity / help an attack resolve quicker.

Thanks again for your replies - they mean so much!

Lil Scout
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