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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
533 Members
Avatar universal

I have dwelled in neurological limbo, now I am descending to hell

Hi,
I have been in neurological limbo for many years.  I have a complex regional pain syndrome, abdominal migraines, and atypical seizure like symptoms that went undiagnosed for many years.

I've seen many neuro guys,
until I thought my brain would fry.
They repeated neuro exams,
although they didn't give a damn.
Some of them knew about brains,
others studied spinal cords.
They started to look the same,
from the bewildered to the bored.
You have no neuro problem,
they fed to me like paublum.
I finally found an endo man,
who seemed to understand.
He knew what was wrong with me,
but this did not set me free.
No more stupid lying,
I found out I was dying.

I don't know why I put that in a poem.  I have FTD which is a terminal degenerative brain disease and sometimes I start to rhyming without even trying.

Still I think it is better to know my diagnoses even if they arren't treatable rather than lingering in neurological limbo.

I still have neuro symptoms that can't be explained such as aytipical seizure like episodes without strong evidence of seizures.  It resembles a symptom that people with FTD have in the last stages but I'm not there yet. I once went to see a neurologist who wrote a book about the kind of atypical seizure like activity I had been having.  I tried to make references to his book, he did not answer me.  He didn't talk about anything he wrote in the book and just gave me the standard neuro line about seizures.  I asked him if was the doctor who indeed was the author of this book and he nodded his head.  But, he would say no more.  He admitted me to the hospital for monitoring, went on vacation and I was seen by some associate who did nothing but hook me up to the monitor which the nurses used to spy on me and my husband.  I was a chronic pain patient.  They would not provide all my meds but they refused to let me take them.  One nurse even attempted to search my husband's bag for unauthorized meds.  I ended up keeping my meds in a purse hooked onto the bathroom door where they couldn't see or hear me.

Also I still have one foot (actually right leg sciatica) because I have inoperable degenerative disc disease that I'm told doesn't look bad enough to be causing so much pain that I can't hardly walk.

I have had the most luck seeing a neuroendocrinologist and a neurologist who is board certified in pain management.  

Even though I have a firm diagnosis of FTD from a specialist at Johns Hopkins, a neurologist told me despite MRI evidence and extensive neuropsych. evaluations that prove I have FTS that because I don't "act out" and I understand that I am ill that I cannot have FTD.  He did say because of the nature of my nightmares I might have Lewy bodies.  There is a variant of FTD that has Lewy bodies but he didn't seem to understand this.

So even when you get that final sentence, nerve endings are still raw and medical mysteries hang about.

Take care,
Mersilkee
7 Responses
585414 tn?1288941302
Well its important to remember that neurologists are only as good as they treat people, not their credentials. I saw 6 "experts" (literally) in the field before I was refered to a neurologist who was at all helpful. Then from there as they were now understanding some neurological disabilities that are somewhat "controversial" in the field so I was referred to a neurologist who had a full understanding of treatment modalities and when I gave him information on new treatments in clinical study would do his own research and some of them he approved starting me on and have been quite helpful. Also everyone should be treated with respect. That should not have happenned to you in the hospital. The best thing to do is keep networking until you find a neurologist who is right for you and instead of finding an unknown diagnosis something to get antagonist about does some research to better understand it and treat you.
551343 tn?1506830518
Welcome to our group.

What can I say to you nothing really that you havent already heard before.

I feel for you its madness all this.

The neuro they are so indicisive. I think the problem is they rely too much on how other people present diseases.

I was told no to MS because I am not a typical MS patient, doesn't matter that my symptoms are the same, the fact that I am coping so well means I don't have MS which implies that everyone with MS cant cope with is just RUDE and totally not true.

I wonder if they are just scared to say its THIS or THAT in case they are wrong and get sued or something.

It must be very hard for you. All I can do really is send a hug of support. xxxxxxx Maria xxxx


1056589 tn?1273747102
Welcome,

I agree with Maria this is all madness...
Sometimes I feel doctors forget what it's like to be human. How would they feel if it was a family member or themselves going through this......

Please Take Care ,Theresa
505094 tn?1240317431
It bothers me a lot when docs tell people that they are 'terminal'.  How do they know that.  In the many years that I worked with Hospice (cancer) and Hospice (aids) I heard doctors tell people that many times.  The people that refused to believe the diagnosis did well.  Some went into remissions and are still alive today.

Many years ago, my mother had colon cancer.  I had sent her Dr. O. Carl Simonton's book, 'Getting Well Again'.  If you haven't read it, it's about getting people to restore their belief in themselves through affirmations and visualization to turn their illnesses around.

There are tons of books written on the same subject.

When she was back in her room the doctors told her that cancer had spread throughout her body and that she was dying.  My overly feisty mother picked up the book from her bedside and waved it at the doctors.  She told them that the book she was holding in her hand said that she didn't have to die!  That was 40 years ago and she is now 93 years old.  She's also been living with MS for 50 years.

I wish the best for you and send lots of hugs, Charley.




1137779 tn?1281542505
Wow, Charlie, that's an inspiring story about your mom.

Completely agree with you Mersilkee that it's better to know than to be in some sort of murky limbo. But, sheesh, a hard dx they'vegiven you. And I hate the way neuros treat people - like they can't decide whether to treat their patients as having a physical illness or a psychological one.
Sammiex
Avatar universal
I've been distracted, we've moved due to my husband's job and my husband is so busy with work, we still haven't found an apartment.  We are living in an extended stay hotel right now but it is cozy.

Thanks for the encouragement about "terminal" illnesses.  Unfortunately, my disease is deflinitely terminal.  It is a matter of how many years I will be able to live and how many of them I will still be able to communicate with people and recognize what they are saying.  My meds have helped my neurological condtions.  I am going back to see my FTD doctor in March.

Take care
Avatar universal
If you want to know what is going on with me feel free to visit my blog.  I've been on a heatlh care reform tangent lately and patient's rights but I am still writing about what it is like to live with my illness.

Mersilkee
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