at a loss with doctors

[mommaof2aspies]

Ok so I went to my regular doctor today bc I've started having problems walking, talking & memory. 2 mths ago this put me on 7 different meds & I had a bad reaction. Today she denied even giving me them & cancelled the 2 I am still taking. So long story short she refused to.do anything for me no test or anything. She informed me she thinks I have syringomyelia & its progressed. Now I do have Chiari but have never heard of this & she has never seen my MRI & when I told her my physical therapist found a nodule running along my spine she said she knows yet she has never checked my spine. Does anyone one know what this is? All I know I have hardly any strength in my arms, my hips & legs hurt all the time & my hands & lower legs & feet are always cold. I also get a numb sensation om the left side of my body from the head to my toes when I'm upset. Help I just keep getting the run around. Doctor had me so upset today I was in tears and couldn't even speak a sentence bc when upset I studder which is also a new thing.  

[selmaS]

  Keep hydrated, rest when u feel like u need to, no lifting, pushing or pulling...and if u continue to feel bad u need to get a Dr to check for a leak.
Most likely they will do a LP, and u have  to be careful with those, lay flat afterward again so it heals without a leak....

A vicious cycle.....

  Listen to ur body and if u feel worse call ur dr.

       "selma"

[mommaof2aspies]

Never thought of that I know I've slowly gotten worse & I've had several times being rushed to the hospital bc of blackouts & stroke type episodes but never really said to proceed to do anything regarding it.  I'm a very independent person & have 2 special needs kids so this last go round left me completely disabled for a month & a half and lucky I have a great hubby. So its been emotionally draining. But I'm slowly gaining some strength but still unable to help even my 2nd grader with homework. This episode happen after getting the flu really bad & being on a toxic combination of medication that affects your brain.

[selmaS]

  Hi....I know just what that feels like I had one after I had my DD and I was in bed for 5 days...I could not move...had to eat lying in bed....it was awful.
However, my leak repaired on it's own and I did not require the blood patch on the 5th day....

I wonder if u still have a leak?

[mommaof2aspies]

Thx the nodule is around the middle of my spine & another one lower on my spine. During previous lumbar punctured they did note I don't have enough spinal fluid to close the hole so they had to do a blood patch 2 days later... Prepped me for epidural but use blood instead of meds while they withdrew blood from my arm then inserted the blood around my spine. They had to do this bc 2 days later the fluid still hadn't replenished and I had a migraine for 3 days straight couldn't eat, be near light or even get out of bed.    

[djh28]

maybe you have a strock

[selmaS]

  Hi...as Rahe28 mentioned without a true chiari specialist u may continue to get this type of treatment and care...we have dubbed this"the Royal Chiari Run around"

  Syringomyelia is from an obstruction of CSF flow, a cyst forms that fills with CSF and is called a syrinx, it can cause many of the symptoms u mentioned...it all depends on where the syrinx is located as to which nerves are affected. A syrinx can form newhere  on ur spine...some Drs only check the cervical spine, but u also need the thoracic and lumbar checked as well.

  I would strongly suggest u get another opinion.

         "selma"

[Rahe28]

So sorry to hear of your troubles both medically and dr wise. Sounds like you need a new dr, Taking you of of meds abruptly can cause more issues, and it sounds like she is just pushing you of as no big deal. Do you have a NL or NS yet? If you do, that may be your best bet is to call one of them. If this dr wont give you a refferal, get a new doctor that will. It doesnt appear that you have a chiari specialist, and from what I have learned and been through myself....that is where help lies,
How can she make an assumption without an MRI. Does your Mri report say that you have a synrix?