Aa
I really am not crazy.
I need help. Fourteen yrs ago I woke up unable to walk. Hospital, neurologist etc later. Two yrs in a wheel chair. Learned to walk again. Severe migraines. Unable to tolerate motion. Up down side to side. I was "clinically" diagnosed with MS. But now that seems to have never been an issue. No one will help me. I hurt all the time. I have tried everything from "physcology" to 'biofeedback'. Please tell me im not crazy. Cause honestly this is driving me there. Doctors dont care anymore. I do not take pain meds except for tylenol. Except for migraines that wont go away after 2 or 3 days. And thats when I do to doctor only. My vision is considerably worsening. Oh forgot one thing. Unfortunately, I live in what is called the "meth capital" and doctors here treat someone with "chronic" symptoms like they are either drug seekers or nuts. Also medicaid is frowned on often. Which makes me wonder if that is why I am being ignored.
Maybe vertigo? Charcot-Marie Tooth? Nerve or disc compression? What kinds if imaging studies have they done (CT, MRI, PET scan, etc)? I do hope you get some answers and relief soon.
Hi Libra.
Well my story sounds a bit like yours. 12 years ago i woke up unable to walk also, i had vision problems, and the most chronic headaches imaginable.
I was told i had transverse myelitis, which is inflammation of the spinal chord, which left me with bladder issues, which are still here today.
However my neuro at the time diagnosed me with MS, which i had to learn to live with, however my neuro retired and i was passed on to a new neuro.
After spending 4 years with my new neuro he said i dont think this is MS, and tried to fob me off like it was all in my head, even though i had urodynamics, saying my bladder issues were neurogenic, and my swallowing issues were neuromuscular.
He was very arrogant, and told me to go away, and basically live with what i thought i had. No other explanations, only i coud have a phyciatrist for abnormal illness behaviour, i was livid.
I then went on to still suffer the miserabe headaches, which had become part of me for 12 years, and all my other issues,etc.
I went on to prove my neuro wrong, because i have the antiphospolipid syndrome, which can cause awful headaches, etc,
This is easy to test for, and is two simple bloodtests, to check for Acl, being anticardiolipin antibodies.
The second being LA, the lupus anticoagulant.
These two simple bloodtests, could or might be your answer, like they was mine, also you only need to test positive for one of them, to be positive.
The thing with me i knew, there was something seriously wrong with me, and i never give up searching, even though i felt like it.
I would check out APS, for symptoms, and see if some match yours, the headaches are a definate, also transverse myelitis can also be a complication of APS.
If you need anymore help im here.
Remember knowledge is power.
Good luck Libra
Nicola
Well my story sounds a bit like yours. 12 years ago i woke up unable to walk also, i had vision problems, and the most chronic headaches imaginable.
I was told i had transverse myelitis, which is inflammation of the spinal chord, which left me with bladder issues, which are still here today.
However my neuro at the time diagnosed me with MS, which i had to learn to live with, however my neuro retired and i was passed on to a new neuro.
After spending 4 years with my new neuro he said i dont think this is MS, and tried to fob me off like it was all in my head, even though i had urodynamics, saying my bladder issues were neurogenic, and my swallowing issues were neuromuscular.
He was very arrogant, and told me to go away, and basically live with what i thought i had. No other explanations, only i coud have a phyciatrist for abnormal illness behaviour, i was livid.
I then went on to still suffer the miserabe headaches, which had become part of me for 12 years, and all my other issues,etc.
I went on to prove my neuro wrong, because i have the antiphospolipid syndrome, which can cause awful headaches, etc,
This is easy to test for, and is two simple bloodtests, to check for Acl, being anticardiolipin antibodies.
The second being LA, the lupus anticoagulant.
These two simple bloodtests, could or might be your answer, like they was mine, also you only need to test positive for one of them, to be positive.
The thing with me i knew, there was something seriously wrong with me, and i never give up searching, even though i felt like it.
I would check out APS, for symptoms, and see if some match yours, the headaches are a definate, also transverse myelitis can also be a complication of APS.
If you need anymore help im here.
Remember knowledge is power.
Good luck Libra
Nicola
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