Yet another neuro appointment

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Yet another neuro appointment

Post by Kath » Tue Aug 29, 2006 1:09 pm

Chronic pain exhausts you!
You are not a wimp!
They really need to fully evaluate you and make a plan for pain control.

Kath adult/robpi
Kath robpi/adult

Kathleen Mallozzi

Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA

Re: Yet another neuro appointment

Post by Carolyn J » Tue Aug 29, 2006 3:15 pm

Yesss, a Pain Management Specialist/Clinic is in order. I hope you are able to fullow up there soon.
We are here for you,always.
HUgs & Prayers,
Carolyn J

Message was edited by: Carolyn J
Carolyn J


Re: Yet another neuro appointment

Post by kissygoose » Tue Aug 29, 2006 4:45 pm

So how do they fully assess me? So far he just takes x-rays, MRIs or EMGs of the parts that are troubleling me at the moment. He does not understand the whole. He told me today that the arthritis is just normal aging. I'm only 32 years old. Why can't I find someone who can understand and help me. I have no idea why I haven't been sent to a pain management clinic yet. I'm so tired of all the tests, the changing of meds and their side effects, of not being able to live my life and then having it thrown back in my face by the doctors and SSD that these aren't "issues".

Sorry...this is all just getting to be too much these days.

Posts: 104
Joined: Wed Aug 17, 2005 8:06 pm

Re: Yet another neuro appointment

Post by Beckyerin » Tue Aug 29, 2006 5:17 pm

I finally took the initiative by myself and made an appointment to see a pain specialist/physical medicine and rehab doctor.No other doctor(and I've seen quite a few over the last year) ever referred me. Where I live in pittsburgh there is a BPI specialist I saw but when he wrote the script for PT it just said treat for pain in right arm.
The rehab doctor I saw today examined me and wrote a specific script for which muscles need to be worked on in PT.
I know that I've read in the past you haven't been able to go to PT but he also gave me other options if PT doesn't work(trigger point injections, etc) I guess my point is that I walked out of there with more hope of feeling better than from any other doctor(even the specialist)
FYI he has started me on Lyrica(similar to nerontin)which he says works alot better(we'll see).
Don't give up!

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Joined: Mon Nov 22, 2004 4:43 pm

Re: Yet another neuro appointment

Post by brandonsmom » Wed Aug 30, 2006 5:28 am

You really need an appointment with a BPI specialist. They know, they have studied, and if they are any good, they realize there is pain with OBPI. You are not a wimp. PAIN STINKS!!!! But until you see a pain doctor or a BPI specialist you will never hear the words " I KNOW THAT YOU ARE IN PAIN" I know you are having a rough time finding a clinic that you can go to, but keep trying......Dr. Nath is all over the place all the time. GOOD LUCK GAYLE


Yet another neuro appointment

Post by kissygoose » Thu May 29, 2014 4:32 am

I appologise for the downer. I feel like everytime I come back from the Neurologist I'm down.

Anyway, my x-rays from my arm and hand were normal. He thinks the pain in my thumb joints are from repetitive stress syndrom which there isn't anything he can do for it. The ones of my hips and back show that I have mild arthritis in my right hip and pelvis and the beginnings of arthritis in my lower back. He's ordered an MRI and EMG for my back and my left leg (my left leg goes numb a lot). He is also changing my celexa to efexor because it also has neuropathic pain killing effects. He's keeping me on the same level of Neurontin. He also said that he doesn't beleive the Neurontin is causing the odd symptoms I'm having. I told him I'm just so frustrated because the neurontin is working but if I do anything "extra" like clean or work on the yard sale or take the kids to the park I hurt pretty bad. He's hoping the Efexor will help but doesn't know what else to tell me. How am I supposed to "live" like that? I must be an extreem wimp too since I have just "minor" problems but they seem to affect me so much. I guess I'm just having a major pitty party and I hate it.

Posts: 1
Joined: Wed Feb 04, 2015 5:43 am
Injury Description, Date, extent, surgical intervention etc: I am a ED specialist from UK
Location: United States

Re: Yet another neuro appointment

Post by Adampeter » Wed Feb 04, 2015 8:00 am

Everyone experiences pain. Pain occurs when parts of the body, whether inside or outwardly, become damaged from some source. Pain itself includes the sensations we sense when something harms internal and external parts of our bodies.

Posts: 759
Joined: Tue May 05, 2009 11:51 am

Re: Yet another neuro appointment

Post by Master DIVER TOM » Fri Feb 06, 2015 8:40 am

Oh its tough being us no matter when the injury happen :shock:
Pain and wait and see on injuries from doctors :roll: :twisted: :evil:
There is no wait and see , get a referral to a BP doc , ;)
By post here :roll: It seems BP doctors can help the BP injury , If your lucky to see one in our medical Quest, to do so :shock:
Fact is pain level increase by using our limitation in life.
I drove a 18 wheeler , with birth erbs for 25 years :shock:
Facts is , If we can find a doctor who could fix our injuries we would be in less pain and take less, ( what ever the med ) :shock:
I am 63 with no help for my birth erbs, No doctor ever told me of any help for it,
Your on a quest to find a BP doctor that can help , Take what ever med you need :shock: ;)
Pain relief happen in our trying , Depression happens when we dont :evil: :twisted:
I am alot closure to a pain level of 10 , by trying to adapt and driving the semi to,
But its tough being us ;) ;) Being Gluttons in pain is what we do.
Finding ways to rest your limitations is to ;)
Get Dan sling for resting your arm and shoulder, Many use it in activity one hand, Amazing :shock: ;) :D
Try to find ways to support your arm with pillows, Get a deep massage in the arm and hand.
Rest and find you way to resting your limiation when you can. it Help pain to ;)
Trying to use your limiation is a struggle in more pain, being depress is worse than the pain we endure in try, day in and out.
We all are doing great , but the pain monster , Sucks :evil: :twisted:
Just Thinking, I hope this might help :roll:

Posts: 1
Joined: Mon Jun 01, 2015 2:28 am
Injury Description, Date, extent, surgical intervention etc: Head injury, 10-11-1999, medication, non-surgical.
Location: New York, USA

Re: Yet another neuro appointment

Post by jhonsoneric86 » Wed Jun 03, 2015 3:32 am

Chronic pain is not easy to control. I have had injury in my head in 2011 in road accident. It was very painful. When our any body part gets injured we experience the pain. Internal as well as external parts both harm due to any injury. Whenever you injured just go for immediate medical treatment if possible then take immediate first aid. Always carry first aid box in your bag along with you.


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