Aa
a bundle of issues
hi all,
I have never been on these types of forums before and am reluctant to join places like MS Australia but I have read some of the posts on this site and I can see and understand what people are going through in their daily lives. So I thought maybe I could share on the range of issues I have. I have acute ventricularmegaly, non-communicating hydrocephalus that doesn't require a shunt, irritable bladder syndrome, irritable bowel syndrome, a stigma and tropia in my eyes and a few other small conditions. I have recently been diagnosed with relasping-remitting MS which has finally being diagnosed over the last few years. I am at the moment not that affected by my conditions and have learned to live with them. I also work full time and will shortly attend school. I found some of posts on this site interesting and that I could relate to a few of them. I have been told by GP's and specialists that I either should be dead, or that I should be very disabled. They are amazed that I am functioning and that my IQ is 134 with 3 neurological impairments. My life at times can be very hard and I have come across many ignorant people but some of the stories I have heard and read makes me appreciate the way I am because I am still able to do things myself and still be able to be myself without having my conditions affect me that much. Anyway I thought I would share this with the forum community. Thanks
I have never been on these types of forums before and am reluctant to join places like MS Australia but I have read some of the posts on this site and I can see and understand what people are going through in their daily lives. So I thought maybe I could share on the range of issues I have. I have acute ventricularmegaly, non-communicating hydrocephalus that doesn't require a shunt, irritable bladder syndrome, irritable bowel syndrome, a stigma and tropia in my eyes and a few other small conditions. I have recently been diagnosed with relasping-remitting MS which has finally being diagnosed over the last few years. I am at the moment not that affected by my conditions and have learned to live with them. I also work full time and will shortly attend school. I found some of posts on this site interesting and that I could relate to a few of them. I have been told by GP's and specialists that I either should be dead, or that I should be very disabled. They are amazed that I am functioning and that my IQ is 134 with 3 neurological impairments. My life at times can be very hard and I have come across many ignorant people but some of the stories I have heard and read makes me appreciate the way I am because I am still able to do things myself and still be able to be myself without having my conditions affect me that much. Anyway I thought I would share this with the forum community. Thanks
hi karry
thankyou for the comments you made.I haven't joined any of the help groups or MS Australia i am somewhat reluctant to because of past experiances so i thought of looking online for sites like this instead
thankyou for the comments you made.I haven't joined any of the help groups or MS Australia i am somewhat reluctant to because of past experiances so i thought of looking online for sites like this instead
hi supermum
my hydrocephalus was cause by congenital aquadutcal stenosis and they don't know how the ventricularmegaly was caused and ive started on fingolimond and was originally on avonex
my hydrocephalus was cause by congenital aquadutcal stenosis and they don't know how the ventricularmegaly was caused and ive started on fingolimond and was originally on avonex
Welcome. I have learned I am not my conditions and statistics lie. You are not only coping but thriving.
Alex
Alex
Hi there & another welcome to the MS community.
There are a few Aussies in this community including myself & it's always nice to have someone who gets my Aussie sense of humour lol. I am also a person who has a number of different dx so I do understand how hard it is to be in this situation. When you say you are not involved with any MS Society, do you mean just online or that you don't have anything at all to do with the MS Society in your state at all?
I was dx last year & have since been referred to my local MS Society by my Neuro who recommended I utilise their extensive services. They can provide Physiotherapy, OT, Speech Therapy, MS nurse, Counselling, Care support, well you name it they can help you or will find someone who can help you. I think even if you don't require their services now it's always good to know they are there for you when you do. They are looking at me as a whole person so they look at my other conditions as well as the MS which is really helpful.
I hope you find this community as caring, informative & resourceful as I have. There are a list of health pages at the bottom of the screen which you may find helpful as well.
Take Care,
Karry.
There are a few Aussies in this community including myself & it's always nice to have someone who gets my Aussie sense of humour lol. I am also a person who has a number of different dx so I do understand how hard it is to be in this situation. When you say you are not involved with any MS Society, do you mean just online or that you don't have anything at all to do with the MS Society in your state at all?
I was dx last year & have since been referred to my local MS Society by my Neuro who recommended I utilise their extensive services. They can provide Physiotherapy, OT, Speech Therapy, MS nurse, Counselling, Care support, well you name it they can help you or will find someone who can help you. I think even if you don't require their services now it's always good to know they are there for you when you do. They are looking at me as a whole person so they look at my other conditions as well as the MS which is really helpful.
I hope you find this community as caring, informative & resourceful as I have. There are a list of health pages at the bottom of the screen which you may find helpful as well.
Take Care,
Karry.
COMMUNITY LEADER
Hi fellow Ozzie and welcome to our little MS community!
It's always great to hear that our community has connected to someone and what ever it was that you could relate too, i'm glad it brought you out of lerkerdom :D enough to say hello and tell us some of your story and what an MS story that must of been.......
I am not sure at all how or if your pre-existing dx of Ventriculomegaly and Hydrocephalus will effect your RRMS and visa versa, definitely going to be complicated for you and your neuro to work out sx treatment and thinking of treatment, have you started an MS disease modifying drug (DMD's) yet?
For those interested in knowing what Ventriculomegaly and Hydrocephalus is......
"Ventriculomegaly and Hydrocephaly
What is ventriculomegaly?
The normal brain is surrounded by a clear fluid called the cerebral spinal fluid (CSF). This fluid cushions the brain in the skull and exists in the spinal canal as well as the spaces in the brain called the ventricles. Ventriculomegaly, also known as hydrocephalus, is a condition in which the CSF-filled structures within the brain become larger than normal. As a result, the large ventricles can inhibit the proper development of the brain."
http://childrens.memorialhermann.org/conditions/ventriculomegaly-and-hydrocephaly/
** From what i understand this is more commonly found in infants and is congenital but it can also be "acquired" in both children and adults and i suspect there would be quite a few adults who were dx with MS after a head injury, though not that many with a pre-existing dx of Nericulomegly and hydrocephalus since birth but as we've learnt just about anything is possible when it come to MS.
"Acquired causes in adults:
Benign or malignant tumors may cause blockage of CSF flow. Ependymoma, subependymal giant cell astrocytoma, choroid plexus papilloma, craniopharyngioma, pituitary adenoma, hypothalamic or optic nerve glioma, hamartoma, and metastatic tumors are most commonly associated with hydrocephalus
Subarachnoid hemorrhage accounts for one-third of the cases of hydrocephalus in adults. The arachnoid villi are blocked by the hemorrhage, but communication is preserved between the ventricles and the subarachnoid space creating a form of hydrocephalus that is both obstructive and communicating
Head injury: Hydrocephalus is commonly caused by a subarachnoid hemorrhage that is produced by injury to the head
Idiopathic hydrocephalus: Approximately one-third of cases of hydrocephalus are idiopathic
Previous posterior fossa surgery: Normal pathways of CSF may become blocked as a result of the surgery
Congenital aqueductal stenosis: Individuals may be asymptomatic for hydrocephalus until adulthood
Infections: for example, bacterial meningitis, cerebral abscess
Medication: Infliximab infusion can cause communicating hydrocephalus"
https://www.clinicalkey.com.au/topics/pediatrics/hydrocephalus.html
Again welcome, and if you have any questions please just ask :o)
Cheers.........JJ
It's always great to hear that our community has connected to someone and what ever it was that you could relate too, i'm glad it brought you out of lerkerdom :D enough to say hello and tell us some of your story and what an MS story that must of been.......
I am not sure at all how or if your pre-existing dx of Ventriculomegaly and Hydrocephalus will effect your RRMS and visa versa, definitely going to be complicated for you and your neuro to work out sx treatment and thinking of treatment, have you started an MS disease modifying drug (DMD's) yet?
For those interested in knowing what Ventriculomegaly and Hydrocephalus is......
"Ventriculomegaly and Hydrocephaly
What is ventriculomegaly?
The normal brain is surrounded by a clear fluid called the cerebral spinal fluid (CSF). This fluid cushions the brain in the skull and exists in the spinal canal as well as the spaces in the brain called the ventricles. Ventriculomegaly, also known as hydrocephalus, is a condition in which the CSF-filled structures within the brain become larger than normal. As a result, the large ventricles can inhibit the proper development of the brain."
http://childrens.memorialhermann.org/conditions/ventriculomegaly-and-hydrocephaly/
** From what i understand this is more commonly found in infants and is congenital but it can also be "acquired" in both children and adults and i suspect there would be quite a few adults who were dx with MS after a head injury, though not that many with a pre-existing dx of Nericulomegly and hydrocephalus since birth but as we've learnt just about anything is possible when it come to MS.
"Acquired causes in adults:
Benign or malignant tumors may cause blockage of CSF flow. Ependymoma, subependymal giant cell astrocytoma, choroid plexus papilloma, craniopharyngioma, pituitary adenoma, hypothalamic or optic nerve glioma, hamartoma, and metastatic tumors are most commonly associated with hydrocephalus
Subarachnoid hemorrhage accounts for one-third of the cases of hydrocephalus in adults. The arachnoid villi are blocked by the hemorrhage, but communication is preserved between the ventricles and the subarachnoid space creating a form of hydrocephalus that is both obstructive and communicating
Head injury: Hydrocephalus is commonly caused by a subarachnoid hemorrhage that is produced by injury to the head
Idiopathic hydrocephalus: Approximately one-third of cases of hydrocephalus are idiopathic
Previous posterior fossa surgery: Normal pathways of CSF may become blocked as a result of the surgery
Congenital aqueductal stenosis: Individuals may be asymptomatic for hydrocephalus until adulthood
Infections: for example, bacterial meningitis, cerebral abscess
Medication: Infliximab infusion can cause communicating hydrocephalus"
https://www.clinicalkey.com.au/topics/pediatrics/hydrocephalus.html
Again welcome, and if you have any questions please just ask :o)
Cheers.........JJ
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