Another additional diagnosis
AnonymousJuly 5, 2009 at 2:38 pm
[COLOR=Blue]Hello everyone, so sorry I have been away so much for awhile now. I just wanted to give you an update, my brother is doing well after having a portion of his liver removed due to a obstructed bile duct.
However with me I received another additional diagnosis last week which is not only scary but up in the air. I have been diagnosed with Cerebral Atrophy, my prognosis at this point is unclear, here is some info. on it:
[B]”What is Cerebral Atrophy?[/B]
Cerebral atrophy is a condition characterized by a decrease in the size or a wasting away of brain cells and tissues. It may result from malnutrition, abnormal cell or hormonal changes, or stroke. Symptoms include muscle weakness, vision or speech impairments, and dementia. Neuroimaging techniques such as magnetic resonance imaging (MRI), computer positron emission tomography (PET), and single-photon emission computed tomography (SPECT), are used to diagnose the disorder. Cerebral atrophy may be a feature of numerous disorders, and may affect only part of the brain.
[B]Is there any treatment?[/B]
Generally, treatment-which is symptomatic and supportive-depends upon the specific disorder of which cerebral atrophy is a component.Care that maintains and stimulates individuals with the disorder improves their quality of life.
[B]What is the prognosis?[/B]
The prognosis for individuals with the disorder varies. Progressive cerebral atrophy is fatal because the atrophy spreads to all parts of the brain. Cerebral atrophy that is limited to a specific area of the brain affects normal functioning, however, it is not necessarily fatal.
[B]What research is being done?[/B]
The NINDS conducts and supports research on conditions of the brain and spinal cord, including cerebral atrophy. Much of this research focuses on learning more about the cause(s) of these conditions, and finding ways to prevent and treat them.”[FONT=Arial, Helvetica, sans-serif][SIZE=-1]
While scary the entire prognosis, treatment etc. are up in the air, I will receive another MRI in 6 months and at that time will know more and keep you guys updated. This could be serious or can be controlled if the process has been stopped. I will keep you all posted.
AnonymousJuly 5, 2009 at 7:15 pm
Jerimy, I wonder are there new symptoms that lead to the diagnosis of cerebral atrophy or was it just one of the things seen on the MRI? I work with children and there are a lot of them that have cerebral atrophy from high dose or prolonged steroids or from chemotherapy (or radiation). My own MRI was read as some cerebral atrophy. It is seen on the MRI was the main brain section being smaller than expected or as there being more space between the curves on the surface of the brain. It is also seen in, I think, every person as part of aging if one lives long enough (past middle age). So although this is not ever in the category of good, it may not be as bad as it sounds. For example, if the atrophy occurred as a consequence of treatments in the past, it will not be progressive. You will be like you are. the concern, of course, is that there is some degenerative process in which brain cells are dying. This will be seen over time by a repeat MRI. If this worries you a lot, ask if it is mild or moderate or severe and if it would be due to past treatments. I have seen lots of MRI reports that state that there is cerebral atrophy and when I ask the radiologist–they are just being complete to say that the size of the brain is slightly reduced. I was told on mine that those words did not mean a lot more than that I was not twenty anymore. I very much hope that this is not a huge new diagnosis for you.
WithHope for a cure of these diseases
AnonymousJuly 5, 2009 at 8:02 pm
I am so sorry you are going through this. No matter what the cause or outcome I think you’ve had your fair share of challenges to deal with. My heart goes out to you for the uncertainties you face in the next six months. I suggest an around the world tour that lasts exactly six months – that should take your mind off of your mind. 🙂
Light heartedness aside I remember how terrified I was when they found lesions in my brain and there are days when I’m scared I’m losing my mind because I’m too tired to think logically. I fear it’s my disease until everyone else my age reminds me it’s just part of getting old to forget things and math gets rusty if you don’t use it and so on. I should really get back in the habit of doing those logic puzzle books like my parents do – it’s embarrassing they can out think me at their age. 😮
I’ll be thinking of you – send postcards from your world tour. 😉
AnonymousJuly 5, 2009 at 8:16 pm
I’m new to the group, still waiting on testing to come back.
I just wanted to say I will keep you in my prayers.
Hopefully since there is an “unknown” there is a chance of you doing outstanding?
Gotta think glass half full… cause there are already too many half empties out there.
I wish you well.
AnonymousJuly 5, 2009 at 8:38 pm
Hi Jerimy, I’m with Julie on that around the world tour.:)
You have helped me so much. All I can do is wish you well and pray for a good outcome for you.
Is Dr Teener taking care of you? I would think it is a good sign that you don’t have to have another MRI for 6 mo. I know it for comparison, but 6 mo. seems to be a good sign.
Sorry this is happening to you but you know we’re all here for you.
Take care Jerimy. Will pray for a good kind of cerebral atropy.
All my best.
AnonymousJuly 5, 2009 at 9:29 pm
Thanks so much you guys, I always feel among family with you all and am always cheered up when I come here. Emma, it is Dr. Teener whom I am seeing and he is an amazing Dr. so I know I am in good hands with him. I will keep you guys updated, I apologize for not being here often but I am always an email away for anyone, whether we have met yet or not jerimyschilz at hotmail dot com
PS-Anyone who wishes to accompany me on the world tour just let me know, guess we need sponsors too 🙂
July 5, 2009 at 10:01 pm
JERIMY!!!! I am so glad to hear from you!! How about if you want to talk you e-mail/call me!!! You helped me SOOOO much when Kevie was first dx. I don’t know what I would have done with all of you guys!!
What is the reason for the new dx? New symptoms? I like With Hopes explanation regarding past treatments(steroids) I seem to remember you were on them? Does the doc think that is a possibility? I am going to find your # and try to call you tonight. We missed you at the symposium in November. I really wanted to see how tall you were or how shhort Shannon and Ben were!!!! Thinking of you!!
Dawn kevies mom
AnonymousJuly 6, 2009 at 3:58 pm
Long time no hear Buddy! We hopefully will be to Michigan some time this Summer and have to get together. Sorry to hear about your Red Wings… not really. Austin was SO SIDE EXCITED HIS Penguins won. We were really wanting the Hawks to win , maybe now with Hossia, 12 years.
Tommy needs to go to Michigan soon, but Abby is taking a second session of summer camp. You would enjoy this, Emagination Computer Camp, she is taking 3d animation, Advanced Flash and action game design. She is done July 18th then maybe we can come up and bug you. Both kids have been into Warcraft lately too.
I like WithHopes explaination of the MRI. Remember all the stories you have heard about PROBABLE DIAGNOSE, and how wrong some end up being,
Abby is back on loading doses, her bowel and bladder issues have seemed to settle down since we started the loading doses.
Tommy sends his best also,
AnonymousJuly 6, 2009 at 7:15 pm
Glad to finally seeing your name again. Sorry about the new diagnosis. I wonder if this is something that occurs with age. I was told the same thing a few years ago after I insisted on an MRI because this stupid neurologist in Thailand diagnosed me with Parkinson’s based on the way I walked and absence of knee reflex. He probably never heard of CIDP. Anyhow, hope it’s nothing serious. I am still alive and kicking with my brain atrophy.:D
What’s this about a world tour. We currently are on our 3-months America tour and will be in Michigan in October. Planning to meet with Cheryl. Are you still up for it. It’s for real this year. 🙂
AnonymousJuly 7, 2009 at 5:31 am
I’m working on the corporate sponsors – so far nobody is offering up a world tour for a plane full of sick people but there still might be somebody out there for us.
In the meantime I could offer you an Around the World of Warcraft tour if that appeals to you :p or I can set up a Google Earth tour of all the places I’ve lived and visited :rolleyes: With all the people on this forum I bet we’d cover the earth with all the places we are living and have visited… we can do a separate tour for all the places we [U]want [/U]to visit – that will take considerably longer, I think. 🙂
Take care Jerimy
AnonymousJuly 10, 2009 at 10:46 pm
Jerimy, Glad you have Dr Teener. He has been just super to me, thanks to you.
About that world tour-while Julie is lining up corporate sponsors, I want to be among the sickos on the plane. I lined up Stu and Julie from the tavern to serve drinks and real full length meals on the flights. FOR FREE AND NO TIPPING.
Hey Julie-Do you think the GBS/CIDP Foundation would be a sponsor. I know you could sweet talk someone.:D
Hang in there Jerimy; we’re all hanging there with you.
You must be logged in to reply to this topic.