SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
I finally got a diagnosis, though it's still not over
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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I finally got a diagnosis, though it's still not over

I spent 2 years trying to get a firm diagnosis - I even spent 5 months on antibiotics for Lyme.  I had plenty of MRIs and blood tests.  My MRIs looked non-specific.  Finally, I was sent to a local, well respected university hospital.  Someone had them also MRI my spine.  With this they saw lesions and I was diagnosed with MS.  I still get pinged back and forth between Rheumatology and Neurology and now a sleep clinic for secondary issues, but it stunned me that I had been walking (more or less) around for 2 years trying to convince everyone I had a problem, and it only took 5 more inches of MRI to finally confirm it.

If they're only looking at your brain, have them look at your spine too.  It could be the difference between an anti-depressant prescription and something that will actually help you with your problem.
5 Comments
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956292_tn?1334058469
Hello,

I am sorry to hear of your dx. BUT so glad you have found your answer. How are you? I agree that if you know something is wrong...push to find the answer! I went 4 years before i found my current doc who dx. me pretty much on first appt.

Hope to speak to you soon! (off to work)

Jibs
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1475492_tn?1332887767
Hugs ICheese...

Tthere area  few of us still here in limboland that have been officially diagnosed. Jibs and I both have MS. I understand the bittersweet emotions this brings.

~Barb
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Avatar_f_tn
I am so glad you finally got a definitive answer!  Lyme and MS can look so much alike that each can be mistaken for the other. I am sorry to hear you have MS, but at least now you know what you're dealing with and can start treatment.
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1530171_tn?1362547225
Ichheese, the biggest concern with this dx, would be the effect of steroid administration,should your MS coexist with Neurological Lyme (NeuroBorreliosis) or should your MS dx be wrong !
This could send you on a downward spiral, and really set you back.
In MS you need to modulate the immune system but in Lymes it's the opposite, you need to really boost it! (Sorry Rico, I didn't mean to contradict you.)
You must RULE OUT Lyme disease, before you get started on MS
treatment.
There's someone from this group who has had this dilemma and unfortunately, did not get Lyme disease ruled out and now is paying the price.
Out of respect for this member's privacy and serious suffering I cannot mention any more details.

The MS diagnosis CANNOT be made on the basis of abnormal MRI findings, whether white matter lesions are on the brain or the spine.
The diagnostic criteria for MS are very complex and that is why it take so long to dx MS.



Below is a Lyme Disease symptom list from another board.
You can have any combination of  these symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhoea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

On top of Bb infection the tick carries co-infectious agents.
Common co-infections are Babesia, Bartonella, Ehrlichia, HHV-6
and Mycoplasma.
So,  
a.  If you did not get your tests done at IGeneX Labs
  (Bb and Co-infections panel ) and
  b. If you did not get treated by an LLMD for Lyme and Co-infections,
  you are no where near having ruled out Lyme Disease.

There's a lot more information I could supply, enough to write a book,
however, my point is made clearly.
What you do with this-along with anyone else in this situation-is really up to you, but I urge you to at least look into it carefully.

Wish you well, and should you have any questions, please post again here,
or you may PM me any time.

Cheers!
Niko





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Avatar_m_tn
You are probably glad to get a diagnosis.  I feel 98% sure I have MS.  They have ruled out Lyme, Rheumatory Arthritis, and B12 defeciency.  

My problem is:  I got a referral to a Neurologist, for last Friday, but I postponed it for 90 days because I applied for Long Term Health Insurance, and if you get diagnosed with MS, they will deny you coverage during the 90-day waiting period.  I had no choice but to wait, because I'm not independantly wealthy.  

It is driving my crazy, not knowing, why everything in my body hurts.  Why I keep getting Trigeminal neuralgia, why I'm having problems with mobility.  Why I'm having problems swallowing, and double and blurred vision. (Yes, I even went to an eye doctor...who said my vision is fine.  And why I only sleep 2 hours at a whack.  

I hope you are getting treatment that will help you.  Good luck.
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