SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
neuro
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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neuro

Hi,

I have been feeling the trembles.  My hands shakes.  My mood is sadness.  My attention span is short.  As a footnote, I am an advent reader but lately that has fallen off.  My mind is foggy.  Like when thinking of something or writing something only like a train track there is a piece missing.  So, I jump around.  I have trouble sleeping.  These are my experiences today.  I am due for a neuro visit and a neuro eye visit soon.  Have any suggestions for what to say.
7 Comments
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4173379_tn?1355360151
Sorry to hear of your troubles, I'm sure you've seen some of my other posts encouraging others to research iron overload and just how badly it affects a person neurologically, physically, emotionally...organs, tissues, pituitary...especially when I see symptoms like fatigue and body pain/joint pain and brain fog...all symptoms my husband experienced for 10 years before finding out.

Check out irondisorders.org. Awesome site, great info easy to understand. A good place to go before speaking to doc.

Take care...
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Avatar_f_tn
Hi,

I wish I had some suggestions, but I really don't. I do know that it may help is help you out, if you let us know if you have had any test done yet. Have you been tested for deficiencies, what kind of bloodwork have you had done.

I know many deficiencies can cause your sxs. Iron defiency is one. B12 could too. You might want to look into iron overload. On my journey to dxs, I took everyone's ideas into account. I am so glad I did cause now I believe I am closer to answers. So, please take every suggestion into account, and feel free to post questions about test the neuro and other doctors have given you.Life in limbo land is hard.

So, once again I am praying for you. I hope you find comfort soon. I pray the neuro will know, where to take your journey next. May God Bless You,

Kimberly
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Avatar_f_tn
Be sure to tell your doctor exactly what you're feeling. When they can't find clear evidence, doctors are prone to dismissing symptoms as caused by stress. When I was struggling to get a diagnosis, I was sure to articulate that I felt depressed as part of my mystery illness, not that I had symptoms because I was depressed.  My feeling down came after the other symptoms, not before.

And I also thought of blood tests.  I assume you have had a thorough work up for iron, vitamins, minerals, thyroid, hormones, et.al. Have you been checked out for food sensitivities, allergies, or Celiac Disease?   Heavy metal (lead, copper, et.al.) toxicity?

Sometimes vague symptoms like yours are hard to pin down
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Avatar_m_tn
Hi,


Yes I have had many tests and diagnostic studies done since the on set of  my symptoms.  I have had the blood work to rule out other ailments associated with blood determinants.  The results excludes illnesses related to that.

I have had also diagnostic studies like Evoke Potiental Studies(VEP), MRIs, and other diagnostic studies.  The result of the VEP revealed optic chiasm and eye nerves lesions.  The study states abnormal bilaterally elongated p100's.  The MRIs are mounting.  So far I have had 19.  Each show T2 Flairs and hyperintensities and enhancement for all 6 or 8 of them.
I have been diagnosed with Uveitis, Optic Neuritis, and Vertigo and Menieres' Disease.  

The symptoms also include beside those you know blindness in right eye which lasted for 2 and 1/2 weeks.  I have extreme pain behind the right eye.  Also, consistent blurred vision.  I have extremely painful spacitism and spasms.  I have migraines at least twice a week. I have tingly sensation in my feet and legs  and hands and arms.  I have had pins and needle like sensations.  

The meds I take are baclofen, tizanidine, gabapentin for the spacitisms.  I take sertraline for it as welll.  I take sutriphan for migraines.  I am on klonopin for pain.  And, I take other meds as well but will leave it there.
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Avatar_f_tn
Sennefer, Rico is right about making sure you communicate to your doctor so that they get what order your sxs came in. I am praying for you. And it sounds like you have had plenty of testing done. Have you asked your nuero about your sxs, and how they can all be connected. I have noticed done doctors will dxs each individual sx. Instead of the bigger issue.

As Rico pointed out I was thinking more of blood test. Has deficiencies and ANA been ruled out. I am guessing they have. Someone once told me that a magnesium deficiency should be ruled out by a different type of test then the standard blood test. Their are other disorders that also need different test from the standard test sometimes. Lyme disease, and iron overload are a couple I have heard of needing different test.

So, don't give up on answers. I was tested for Lyme disease, but now know that was probably a false negative. I hope someone else with more knowledge will give their opinion. Niko, was able to give many suggestions to me. I don't believe he has reached out to you yet. But if you want I will message him for you, to read your post.

I just hope you take all suggestions into account. May God Bless you,

Kimberly    
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Avatar_f_tn
Wow.  Sorry to hear you're struggling with so much. Nineteen MRIs?!  That must be a record.  I don't understand why you haven't been diagnosed with MS.  With 6-8 enhanced lesions and numerous other MS symptoms, what is holding them back from a diagnosis? Have they lumped you into a Gulf War Syndrome category instead?  Sorry if you've already explained all this before.

And just out of curiosity, have you ever had a Western Blot test for Lyme or an antibody test for Bartonella (b.henselae)?  I don't know if you've done any research on them, but you might try Googling a symptom/condition along with the word Lyme to see if any others describe something similar to your experiene.  For example, "Lyme optic neuritis" has a lot of hits.  So does "Lyme Meniere's".  Lyme is a known cause of both of these conditions (although there are other causes as well).  When I was searching for answers and went through this exercise, I was amazed at what I found.

While your collection of symptoms is consistent with Lyme, there is usually some joint or muscle pain.  You don't sound like most other Lyme patients, but then I didn't either. My biggest two symptoms early on were fatigue and shortness of breath. I was misdiagnosed with asthma and put on steroids, and then developed lots of GI problems and eventually neuro symptoms.  I have never had any joint or muscle pain. I am a case of European-style neuroborreliosis, acquired in Australia.  So while it is more likely to be something other than Lyme, given that 5 doctors can't figure out what, perhaps it is worth exploring Lyme further.  False negatives on blood tests are common so a negative doesn't exclude it.
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Avatar_m_tn
Thanks.  This is a mystery to me also.  I have all the symptoms of neuro.  And, I have heard the MS thing thrown around.  But, I am just being treated for symptoms.  One specialist believe it is MS and Opthlamology.  But, neuro clinic at the VA has messed my record up with misdiagnoses that no specialist can confirm but suggest thats what it is.  

Gulf War Syndrome has been tossed around too.  Since, I am a GW vet.  But, at this point they are not.
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