Aa
Introduce yourself here.
Hi everyone you can introduce yourself on this thread.
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
What brought you here, how long you have been waiting for a diagnosis and a little bit about yourselves.
You can read about me on the top of this page.
3 years and 1 month I have been waiting. Mariax
Update: I had my 2nd MRI yesterday.
Today, the neurology department called me and said that my MRI was "unremarkable"- so that's good.... But the "mystery that is me" continues.
Next, my neurologist wants (and I do too!) me to see a neuro-ophthalmologist at his hospital because of my vision issues that have been here since Feb, and seem to be manifesting new symptoms- but I don't know when appt will be scheduled.
If nothing "remarkable" is discovered from the neuro eye exam, then I get another spinal tap. And at the end of this month I still have a brain EEG that is already scheduled.
So Neurology doc is still looking, but finding no reason for me to be feeling as poorly as I am or to be having the problems I am.
As glad I am that the brain MRI was "unremarkable", I'm also struggling as it again prolongs the unknown. So, I have very mixed emotions today.... I'm glad, but am also frustrated at another test with nothing "helpful" (please understand I'm grateful there wasn't something awful) and frustrated at the continuation of the "mystery that is me" and having to schedule more tests.
I just (like most everyone here, probably) want to feel better and get my life back! Sorry.... it's been a rough day..... :(
Today, the neurology department called me and said that my MRI was "unremarkable"- so that's good.... But the "mystery that is me" continues.
Next, my neurologist wants (and I do too!) me to see a neuro-ophthalmologist at his hospital because of my vision issues that have been here since Feb, and seem to be manifesting new symptoms- but I don't know when appt will be scheduled.
If nothing "remarkable" is discovered from the neuro eye exam, then I get another spinal tap. And at the end of this month I still have a brain EEG that is already scheduled.
So Neurology doc is still looking, but finding no reason for me to be feeling as poorly as I am or to be having the problems I am.
As glad I am that the brain MRI was "unremarkable", I'm also struggling as it again prolongs the unknown. So, I have very mixed emotions today.... I'm glad, but am also frustrated at another test with nothing "helpful" (please understand I'm grateful there wasn't something awful) and frustrated at the continuation of the "mystery that is me" and having to schedule more tests.
I just (like most everyone here, probably) want to feel better and get my life back! Sorry.... it's been a rough day..... :(
Hello Everyone!
I'm pleased to find this forum and hope that it can be helpful to me and I can be helpful to you all as well!
Just a little bit about my story: In Feb 2012, I went from working full time to being so ill that I could barely get out of bed, and would be totally exhausted with just trying to take 5-6 steps to get to the bathroom. Primary Care Doc did all kinds of tests and blood work, but other than an elevated SED rate (indicative of infection somewhere in my body), nothing could really be found. All the big ones were tested for: Lymes (2x), Diabetes, Myocarditis (infection in the heart muscle).... but all tests, except for the ongoing elevated SED rate, came back normal. In spite of normal results, I got weaker and weaker, and eventually lost the ability to walk w/o assistance- due to pain, tingling, "fire" in my feet and balance/gait problems.
March 17-22 I was hospitalized as Primary Care Doc thought maybe I had Guillian-Barre Syndrome, a peripheral nervous system disorder, but that has since been ruled out.
Since then I have been being seen by my PC Doc monthly as well as am being seen no longer by a local neurologist, but by a neurologist at a well- known teaching hospital. Long story "short"..... still no diagnosis, tho symptoms persist (but 3 mos of PT have gotten me back on my feet again w a support cane), new symptoms appear and testing continues to be done. I am having my 2nd MRI tomorrow both w and w/o contrast.
Neuro Doc has ruled out all peripheral nervous system disorders and says it definitely appears to be central nervous system related... (ugh). He is seriously looking at MS from this next MRI and will compare it to the one I got in the hosp back in March. I have a brain EEG scheduled for the end of the month, which Neuro ordered to check me for epilepsy, petit mal, I guess-though I've never had a seizure iin my life to my knowledge- and don't understand how that would cause all the other symptoms I've been dealing with.
From symptoms and research I've done (I also work in a hospital, tho am not a nurse/doctor, but have access to all kinds of med research) my husband and I would not be surprised at all if it does turn out to be MS.
However, this "mystery" illness is taking forever to get a dx for, which is why I'm glad to find this forum. Most of my friends can't understand my situation and (tho they'd never say it) I think they are sick of hearing about it, seeing me not better and struggling. It has caused some isolation, no, a lot of isolation for me! Again, another reason I'm happy to find you all!!
Ok... enough for now. I'm happy to answer (most) any questions anyone might have, and appreciate any support I can receive or give. My family and I continue to wait, pray and hope for a dx, and some possible treatment... but even we are coming to our whits' ends with all this!
Thank for taking the time to read and for being here!! AmyKate73
I'm pleased to find this forum and hope that it can be helpful to me and I can be helpful to you all as well!
Just a little bit about my story: In Feb 2012, I went from working full time to being so ill that I could barely get out of bed, and would be totally exhausted with just trying to take 5-6 steps to get to the bathroom. Primary Care Doc did all kinds of tests and blood work, but other than an elevated SED rate (indicative of infection somewhere in my body), nothing could really be found. All the big ones were tested for: Lymes (2x), Diabetes, Myocarditis (infection in the heart muscle).... but all tests, except for the ongoing elevated SED rate, came back normal. In spite of normal results, I got weaker and weaker, and eventually lost the ability to walk w/o assistance- due to pain, tingling, "fire" in my feet and balance/gait problems.
March 17-22 I was hospitalized as Primary Care Doc thought maybe I had Guillian-Barre Syndrome, a peripheral nervous system disorder, but that has since been ruled out.
Since then I have been being seen by my PC Doc monthly as well as am being seen no longer by a local neurologist, but by a neurologist at a well- known teaching hospital. Long story "short"..... still no diagnosis, tho symptoms persist (but 3 mos of PT have gotten me back on my feet again w a support cane), new symptoms appear and testing continues to be done. I am having my 2nd MRI tomorrow both w and w/o contrast.
Neuro Doc has ruled out all peripheral nervous system disorders and says it definitely appears to be central nervous system related... (ugh). He is seriously looking at MS from this next MRI and will compare it to the one I got in the hosp back in March. I have a brain EEG scheduled for the end of the month, which Neuro ordered to check me for epilepsy, petit mal, I guess-though I've never had a seizure iin my life to my knowledge- and don't understand how that would cause all the other symptoms I've been dealing with.
From symptoms and research I've done (I also work in a hospital, tho am not a nurse/doctor, but have access to all kinds of med research) my husband and I would not be surprised at all if it does turn out to be MS.
However, this "mystery" illness is taking forever to get a dx for, which is why I'm glad to find this forum. Most of my friends can't understand my situation and (tho they'd never say it) I think they are sick of hearing about it, seeing me not better and struggling. It has caused some isolation, no, a lot of isolation for me! Again, another reason I'm happy to find you all!!
Ok... enough for now. I'm happy to answer (most) any questions anyone might have, and appreciate any support I can receive or give. My family and I continue to wait, pray and hope for a dx, and some possible treatment... but even we are coming to our whits' ends with all this!
Thank for taking the time to read and for being here!! AmyKate73
dear gingerstidd,
i second mrsaristotle's theory that what you are experiencing may be sjogren's syndrome. if you can get a referral to a rheumatologist, that would be your first step in either confirming or ruling it out. there are specific markers they can test for, as well as possibly doing a lip biopsy to help with the diagnostic process.
i hope you feel better very soon. we all know how it is.
blessings,
binx
i second mrsaristotle's theory that what you are experiencing may be sjogren's syndrome. if you can get a referral to a rheumatologist, that would be your first step in either confirming or ruling it out. there are specific markers they can test for, as well as possibly doing a lip biopsy to help with the diagnostic process.
i hope you feel better very soon. we all know how it is.
blessings,
binx
Hi and welcome to our group. I have put your intro on the main board.
Can you tell us what symptoms you have?
I notice you have some interest in dysautomia. My brother has that.
Big and gentle hugs. Mariaxxx
Can you tell us what symptoms you have?
I notice you have some interest in dysautomia. My brother has that.
Big and gentle hugs. Mariaxxx
I've been fairly healthy up til 7 - 8 mo. ago, can't seem to get an MRI or find a Doctor that will do some deep investigating. I'm frustrated but trying to stay positive. My symptoms are starting to get real bad. I am on neurotin and it has helped slightly but symptoms are getting more intense so I don't know what to do. Thanks
Thank you. Nice to meet you.
I saw a neurologist in December of last year. My brain MRI was normal aside from some sinus issues (I had a sinus infection at the time). That led to neurology passing me off to an ENT, who tested my balance crystals in my inner ear, because of the vertigo. Those tests were also normal.
I saw a neurologist in December of last year. My brain MRI was normal aside from some sinus issues (I had a sinus infection at the time). That led to neurology passing me off to an ENT, who tested my balance crystals in my inner ear, because of the vertigo. Those tests were also normal.
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