Sorry to hear you are dealing with Chiari. You can google "syringomyelia" and find a lot of info about Arnold_Chiari under that site. Syringomyelia is a cyst in the spinal cord that a lot of times comes with Chiari. I'm not an expert on this, but was dx'd with a syrinx in my cervical spine about 4 years ago.
You might want to try this site: http://health.groups.yahoo.com/group/SMsupport/
and http://www.asap.org/
There are people who know a lot about Chiari and the best clinics in the USA. I believe there is one in Denver.
If you need help in searching let me know. I hope you get the help you need and start to feel better soon.
HUGS,
challengecase
Hi
I just wanted to let you know that I'm sorry for all that you are going through. I know you are probably overwhelmed right now. It has to be hard having a new baby (and another one to care for too), and having all of these medical issues.
Roxy, don't be afraid to get a second opinon. If your neuro is not willing to talk to you that is not a good sign. Find someone who you are comfortable with.
I don't know much about your illnesses other than I think they are both treatable. I'm sure you know this, but if you are surfing the net looking for info try to stick with reliable sources ( mayo, med help, etc).
Hopefully, others will be along soon with more info.
Hang in there.
Hey everyone, I just wanted to let you all know that Roxy has been dx'd with Arnold-Chiari Malformation and possible syringomyelia. Her retarded neuro won't explain any of this and she really needs some answers. I have been p.m. ing her everything I can find out about it and I hope we all can join in and find out some more info for her. She is a young thing and just had a baby, I feel so bad for her.
Thank You all for helping me with this.
Love Ya Guys,
Ada
WELCOME AND HANG IN THERE I NO IT IS HARD.
BUT YOU WILL GET ANSWERS WHEN YOU GET YOUR
TESTING DONE
KITT
Roxy, I hope that, by now, you will have had your MRI and a follow-up from your neurologist with the report of the radiologist who read the MRI, plus your neurologist's interpretation of the results.
At this point, if you do not have confidence in your doctor's skills or commitment to getting to the bottom of the causes of your symptoms, then start looking for another neurologist. If you are comfortable with your present doctor, (and this is very important) then stay with him or her, but should you decide to make a change, then I would suggest going on-line and investigating a teaching hospital in your area. They will have a department of neurology where hundreds of patients with MS are seen every month, both in office visits and their MRIs. However, any conscientious, thorough neurologist can get to the bottom of your symptoms so I am not urging you to change your neurologist if you feel that he is diligent and caring.
God bless you in your journey,
paperwhites
Roxy, here are some things I gathered up from an MS site, I hope this helps. I hope you get some answers from your Dr's soon.
*Visual Symptoms
Symptom Description
Optic Neuritis Blurred vision, eye pain, loss of colour vision, blindness
Diplopia Double Vision
Nystagmus Jerky Eye Movements
Ocular Dysmetria Constant under- or overshooting eye movements
Internuclear Ophthalmoplegia Lack of coordination between the two eyes, nystagmus, diplopia
Movement and sound phosphenes Flashing lights when moving eyes or in response to a sudden noise
Afferent Pupillary Defect Abnormal pupil responses
*Motor Symptoms
Symptom Description
Paresis, Monoparesis, Paraparesis, Hemiparesis, Quadraparesis Muscle weakness - partial or mild paralysis
Plegia, Paraplegia, Hemiplegia, Tetraplegia, Quadraplegia Paralysis - Total or near total loss of muscle strength
Spasticity Loss of muscle tone causing stiffness, pain and restricting free movement of affected limbs
Dysarthria Slurred speech and related speech problems
Muscle Atrophy Wasting of muscles due to lack of use
Spasms, Cramps Involuntary contraction of muscles
Hypotonia, Clonus Problems with posture
Myoclonus, Myokymia Jerking and twitching muscles, Tics
Restless Leg Syndrome Involuntary Leg Movements, especially bothersome at night
Footdrop Foot drags along floor during walking
Dysfunctional Reflexes MSRs, Babinski's, Hoffman's, Chaddock's
*Sensory Symptoms
Symptom Description
Paraesthesia Partial numbness, tingling, buzzing and vibration sensations
Anaesthesia Complete numbness/loss of sensation
Neuralgia, Neuropathic and Neurogenic pain Pain without apparent cause, burning, itching and electrical shock sensations
L'Hermitte's Electric shocks and buzzing sensations when moving head
Proprioceptive Dysfunction Loss of awareness of location of body parts
Trigeminal Neuralgia Facial pain
*Coordination and Balance Symptoms
Symptom Description
Ataxia Loss of coordination
Intention tremor Shaking when performing fine movements
Dysmetria Constant under- or overshooting limb movements
Vestibular Ataxia Abnormal balance function in the inner ear
Vertigo Nausea/vomitting/sensitivity to travel sickness from vestibular ataxia
Speech Ataxia Problems coordinating speech, stuttering
Dystonia Slow limb position feedback
Dysdiadochokinesia Loss of ability to produce rapidly alternating movements, for example to move to a rhythm
*Bowel, Bladder and Sexual Symptoms
Symptom Description
Frequent Micturation, Bladder Spasticity Urinary urgency and incontinence
Flaccid Bladder, Detrusor-Sphincter Dyssynergia Urinary hesitancy and retention
Erectile Dysfunction Male and female impotence
Anorgasmy Inability to achieve orgasm
Retrograde ejaculation Ejaculating into the bladder
Frigidity Inability to become sexually aroused
Constipation Infrequent or irregular bowel movements
Fecal Urgency Bowel urgency
Fecal Incontinence Bowel incontinence
*Cognitive Symptoms
Symptom Description
Depression
Cognitive dysfunction Short-term and long-term memory problems, forgetfulness, slow word recall
Dementia
Mood swings, emotional lability, euphoria
Bipolar syndrome
Anxiety
Aphasia, Dysphasia Impairments to speech comprehension and production
*Other Symptoms
Symptom Description
Fatigue
Uhthoff's Symptom Increase in severity of symptoms with heat
Gastroesophageal Reflux Acid reflux
Impaired sense of taste and smell
Epileptic seizures
Swallowing problems
Respiratory problems
Sleeping Disorders
Inappropriately cold body parts
Autonomic nervous system problems
Your Friend,
Ada
Well, it definitely sounds neurological. Something has involved your central nervous system, and there's all sorts of things that can cause that, some curable, some not.
When is the MRI scheduled? Make sure that they do a scan with gadolinium contrast - it's essential for picking up active inflammation. Also ask for copies of your films - see if they'll sell you a CD (usually about $20)
Let us know what the MRI says, and good luck!
im sure when the good people of this board come on that you will get responses...hang in there ok....take care and bless you.....deb
Again I am bumping this. Come on guys we have a newbie here who really needs our help. Can we all join in and give her a hand?
First Roxy, Welcome to Our Family. I can see why you are concerned about the possibility of having MS. I hope your neuro can get you set up with an MS specialist. They are better trained at reading mri's than the regular neuro. I really hope they do your next mri with and without contrast and on a T3 machine. It does seem like your neuro is doing a complete workup for you, that is really good.
Please feel free to look at the health pages, write some concerns, write in your journal, post questions, that is what we are here for. We are family here.
Your Very Concerned Cyber Sister,
Ada
Hi there, I'm a Limbolander here but many of your symptoms are described by other members here. When is your MRI of your head? You really need that test ASAP. Is your MD talking to you about MS? Are they considering that as a symptom? Prozac doesn't cause those symptom either by the way. Besides, you've had symptoms longer than you've been on the med. Ok, let us know when your MRI is scheduled and make sure it is done WITH CONTRAST!
cz
hi,and welcome, im not really qualified to answer those concerns of yours but if you have some patience you will get a lot of help....please take care and bless you...deb