Aa
New to all of this....
Last weekend I was admitted to a local hospital for three days due to sudden vision loss in my left eye. I saw an opthamology resident first, who checked for about twenty different possibilities, then referred me to neuro. After all the steroids (still taking them) and x rays and an hour of MRI work, I was discharged with a diagnosis of MS based on the MRI scans and the optic neuritis.
People around me have been very supportive - even as it is hard for them to understand that no, I don't see anything out of my left eye right now despite the fact I am walking around. I have found that many people I know, know someone else who has been dx'd. But, I don't know anyone directly, so I don't know what to expect, or what to do, or even sometimes what to ask.
The ophamology resident got me an appointment with a specialist neuroopthamologist this next week. I don't see a nerurologist for another two weeks, despite the fact my discharge orders said seven days. Apparently doctors orders don't mean much to the appointment department.
I will be going back to work in a few days, despite the half-vision. I'm nervous about that, because it is a stressful job and I work swing shifts (I've actually seen people scheduled to work until 2 am and then return at 7am!). But, I feel like it is important to try to live life as normally as possible right now - even though it is still so much to try to digest. I turn 27 next month, and now I find myself wondering how much my plans for life should be changed or reconsidered - I wanted to go back for more education, wanted to eventually have a child.... things which now I'm not sure if it is even a good idea anymore.
I would just like to ask everyone in the community - if you have any advice to give someone new with all of this, please provide it. I'd really, very greatly appreciate it!
People around me have been very supportive - even as it is hard for them to understand that no, I don't see anything out of my left eye right now despite the fact I am walking around. I have found that many people I know, know someone else who has been dx'd. But, I don't know anyone directly, so I don't know what to expect, or what to do, or even sometimes what to ask.
The ophamology resident got me an appointment with a specialist neuroopthamologist this next week. I don't see a nerurologist for another two weeks, despite the fact my discharge orders said seven days. Apparently doctors orders don't mean much to the appointment department.
I will be going back to work in a few days, despite the half-vision. I'm nervous about that, because it is a stressful job and I work swing shifts (I've actually seen people scheduled to work until 2 am and then return at 7am!). But, I feel like it is important to try to live life as normally as possible right now - even though it is still so much to try to digest. I turn 27 next month, and now I find myself wondering how much my plans for life should be changed or reconsidered - I wanted to go back for more education, wanted to eventually have a child.... things which now I'm not sure if it is even a good idea anymore.
I would just like to ask everyone in the community - if you have any advice to give someone new with all of this, please provide it. I'd really, very greatly appreciate it!
Optic neuritis was my first indication of potential MS. I never got the steroids, but my vision returned to 99 percent over a few months.
10 years after the optic neuritis. I was diagnosed with Breast Cancer and the extreme stress of that probably set off the latest MS exacerbation and got me a diagnosis for sure. MS is not a death sentence for sure!
Best thing I can suggest is to be calm, look forward to your life and not let this speed bump consume your life. Keep yourself healthy by eating well, avoiding exposure to environmental toxins like pesticides, getting exercise and keeping stress in perspective, maintaining a positive outlook and you will do fine.
If you feel uncomfortable with your current doc, do go out and find one you like. It took me 4 neurologists to find the "one" and I am so much more comfortable with my MS than I thought possible.
Glad to have you in our forum, though. We have some of the most knowledgeable and caring and helpful folks around. The support here is terrific.
Cheers!
10 years after the optic neuritis. I was diagnosed with Breast Cancer and the extreme stress of that probably set off the latest MS exacerbation and got me a diagnosis for sure. MS is not a death sentence for sure!
Best thing I can suggest is to be calm, look forward to your life and not let this speed bump consume your life. Keep yourself healthy by eating well, avoiding exposure to environmental toxins like pesticides, getting exercise and keeping stress in perspective, maintaining a positive outlook and you will do fine.
If you feel uncomfortable with your current doc, do go out and find one you like. It took me 4 neurologists to find the "one" and I am so much more comfortable with my MS than I thought possible.
Glad to have you in our forum, though. We have some of the most knowledgeable and caring and helpful folks around. The support here is terrific.
Cheers!
The physicians I was able to see over the holiday weekend did decide that the vision was optic neuritis. I am doing far better today than after my first day of vision loss, but am also looking forward to seeing a neuroopthamologist this week.
There were MRI scans done of my eye, as well as of my brain. That took about an hour total. I'm not sure what weighting of contast was used, but may ask the neurologist when I see him for my first appointment next week. My mother is planning to go with me, and I'm sure she'll find it ridiculous if I ask him I'm I'm actually offcially diagnosed at this time, but I do want to hear whether he's really confidently certain, and also, what he personally identifies as the basis for the dx. Since I haven't met the doc yet, I don't know much of what to expect about him. If I feel uncomfortable I'll probably look for a second opinion or at least a different doc.
There were MRI scans done of my eye, as well as of my brain. That took about an hour total. I'm not sure what weighting of contast was used, but may ask the neurologist when I see him for my first appointment next week. My mother is planning to go with me, and I'm sure she'll find it ridiculous if I ask him I'm I'm actually offcially diagnosed at this time, but I do want to hear whether he's really confidently certain, and also, what he personally identifies as the basis for the dx. Since I haven't met the doc yet, I don't know much of what to expect about him. If I feel uncomfortable I'll probably look for a second opinion or at least a different doc.
"try to keep your life as much like it was before you were diagnosed"
Want to modify that statement a bit by saying that I mean the good parts of your life! If things (like work) are stressing you out and you're not feeling good (I know that when I'm in the midst of an exacerbation I am often feeling kind of vulnerable and strange) then please take time off to look after yourself. But don't abandon the good things because you're feeling uncertain about your future. Something I did when I was diagnosed was withdraw slightly from some people who were very important to me, and stopped caring about some things that had previously been important to me, and that was a mistake, so don't make the same mistake I did. :) Remember you're the same person. It's possible to feel quite detached from your life when you're adjusting to news like this. But don't swim out too far!
Want to modify that statement a bit by saying that I mean the good parts of your life! If things (like work) are stressing you out and you're not feeling good (I know that when I'm in the midst of an exacerbation I am often feeling kind of vulnerable and strange) then please take time off to look after yourself. But don't abandon the good things because you're feeling uncertain about your future. Something I did when I was diagnosed was withdraw slightly from some people who were very important to me, and stopped caring about some things that had previously been important to me, and that was a mistake, so don't make the same mistake I did. :) Remember you're the same person. It's possible to feel quite detached from your life when you're adjusting to news like this. But don't swim out too far!
welcome to the community. I wanted to say hi particularly because it sounds like we have a lot in common. I was diagnosed as the result of optic neuritis, although my vision loss wasn't complete like yours. and I was diagnosed about a month before my 27th birthday. At the time I had just started a postgraduate degree, and am planning to have kids in a few years with my partner of six years. So having a diagnosis at this time in my life was also really disruptive and scary and I have had to rethink a lot of things about my identity and the possibilities for my future.
But I want to reiterate what Quix said about being young, female, and having optic neuritis as your first and only symptom. These are all really good prognostic signs for your disease progression. You may never have another symptom, or it may be years before you have to worry about dealing with another problem.
Having to worry about and worrying about are not the same thing, though. I understand. I am prone to anxiety myself and I think that my diagnosis actually triggered my next exacerbation to some extent! So my advice to you is to take it easy, try to take it slow with the lifestyle adjustments, try to keep your life as much like it was before you were diagnosed, make sure you have good supports, cut back on relationships that are damaging or draining, and above all take care of yourself, and take time to understand what is happening.
I plan to finish my degree, and I still plan on having children. There is no doubt about that. The decision is of course individual, but don't think that MS necessarily has to stop you doing anything that you want to do in life.
{{{hugs}}}
But I want to reiterate what Quix said about being young, female, and having optic neuritis as your first and only symptom. These are all really good prognostic signs for your disease progression. You may never have another symptom, or it may be years before you have to worry about dealing with another problem.
Having to worry about and worrying about are not the same thing, though. I understand. I am prone to anxiety myself and I think that my diagnosis actually triggered my next exacerbation to some extent! So my advice to you is to take it easy, try to take it slow with the lifestyle adjustments, try to keep your life as much like it was before you were diagnosed, make sure you have good supports, cut back on relationships that are damaging or draining, and above all take care of yourself, and take time to understand what is happening.
I plan to finish my degree, and I still plan on having children. There is no doubt about that. The decision is of course individual, but don't think that MS necessarily has to stop you doing anything that you want to do in life.
{{{hugs}}}
Hi, Welcome to our little home of support, information and sometimes silliness. this is a good place to land for someone who just got slapped in the face with a diagnosis of MS. I am Quix. I was a pediatrician in a former life and I have MS. We have wonderful people here with a lot of experience and knowledge about MS.
Right now, I suspect your diagnosis is "Presumptive MS." The full diagnosis of MS requires 2 clear attacks and two different sites of damage in the central nervous system. From what you told us you have had just the one attack and have just one area of damage. So you don't yet have enough history and exam info to make the diagnosis absolutely certain. When that is the case they look to the MRI to see if there are enough lesions in different areas to make up for the lack of a history of repeated attacks.
The other thing the neurologist needs to do before they can nail down the diagnosis of MS is rule out any better explanation, because a lot of diseases look very much like MS and can cause optic neuritis and cause lesions on the MRI.
The reality is that with severe optic neuritis and lots of brain lesions, if your blood work is negative there is about a 90% chance of you having MS. This sounds scary. Try not to be too worried. Optic neuritis usually resolves and your eyesight "should" return. Typically it returns within a couple weeks, though it could be longer or less. MS IS NOT a death sentence. The life expectancy of someone diagnosed with MS today is very close to that of the non-MS population. And only a small percentage end up in a wheelchair within 20 years. MS should not change your plans to have a family nor to expect to see your grandchildren grow.
MS can cause all different kinds of problems and bumps in the road. These we just have to work through. It can be really helpful to have an online support group, because we understand everything you are going through. We have almost 200 active members, and someone will always know what you are talking about.
I am concerned about you returning to work so soon. Is there any way your primary care doc can give you a few days off to rest and give the steroids time to work?
This is not a guarantee, but you have a few of the signs that your MS could be milder than some have it. You are young, female, and have optic neuritis as your first - and only - symptom.
We have a lot of information on MS, but it isn't well-organized yet. You can look through the Health Pages - you'll see the link to them in the upper right hand corner. Antoher great site for a great overview of MS and its many sides is at
http://www.mult-sclerosis.org/
Stay here for questions, though. We can answer or find the answer to just about everything. Welcome again and others will be by shortly to meet and greet.
Quix
Right now, I suspect your diagnosis is "Presumptive MS." The full diagnosis of MS requires 2 clear attacks and two different sites of damage in the central nervous system. From what you told us you have had just the one attack and have just one area of damage. So you don't yet have enough history and exam info to make the diagnosis absolutely certain. When that is the case they look to the MRI to see if there are enough lesions in different areas to make up for the lack of a history of repeated attacks.
The other thing the neurologist needs to do before they can nail down the diagnosis of MS is rule out any better explanation, because a lot of diseases look very much like MS and can cause optic neuritis and cause lesions on the MRI.
The reality is that with severe optic neuritis and lots of brain lesions, if your blood work is negative there is about a 90% chance of you having MS. This sounds scary. Try not to be too worried. Optic neuritis usually resolves and your eyesight "should" return. Typically it returns within a couple weeks, though it could be longer or less. MS IS NOT a death sentence. The life expectancy of someone diagnosed with MS today is very close to that of the non-MS population. And only a small percentage end up in a wheelchair within 20 years. MS should not change your plans to have a family nor to expect to see your grandchildren grow.
MS can cause all different kinds of problems and bumps in the road. These we just have to work through. It can be really helpful to have an online support group, because we understand everything you are going through. We have almost 200 active members, and someone will always know what you are talking about.
I am concerned about you returning to work so soon. Is there any way your primary care doc can give you a few days off to rest and give the steroids time to work?
This is not a guarantee, but you have a few of the signs that your MS could be milder than some have it. You are young, female, and have optic neuritis as your first - and only - symptom.
We have a lot of information on MS, but it isn't well-organized yet. You can look through the Health Pages - you'll see the link to them in the upper right hand corner. Antoher great site for a great overview of MS and its many sides is at
http://www.mult-sclerosis.org/
Stay here for questions, though. We can answer or find the answer to just about everything. Welcome again and others will be by shortly to meet and greet.
Quix
Hi & welcome. I am sorry for the scary time that you are going through but I am glad that you have joined us. I think that you will find great friends, support and answers here. We are not doctors but usually someone has been through something similar and can tell you what they did etc.
My advice is to take a deep breath. I'm just guessing but I would say they kept you that long in the hospital in order to run their tests since they had no diagnosis for your vision loss. I am surprised that they gave you a diagnosis of MS with vision loss and X-rays. Do you have other symptoms? Did they call the vision loss Optic Neuritis?
There are several diseases that mimic MS and 4 different kinds of MS ; Relapsing & Remitting, Benign, Secondary Progressive & Progressive. Each kind and each person progress different.
I know that you are scared but don't make plans to change your future just yet. Wait until you see the neuro and the neuro-opthamologist before you panic. They may give you a different or at least a specific dx and you can take it from there.
Keep us posted on how it goes
Erin :)
P.S. A lot of people with MS live long lives so you can go to school and lots of them have children too. :)
Other than the MRI lesions, the left eye blindness is the only distinct symptom I have right now. Since work has my cicadian rhythms screwed up to start with, achiness or fatigue aren't something I'll chalk up to anything right away. I'm really hoping that meeting with the specialists might help to answer some questions. The only thing I know of the MRIs, which I haven't seen myself yet, is that the neuro docs who did look at them told me that it looked mild, the only descriptory note on my discharge documents was that it was periventricular and subcortical white matter lesions. They did tell me that they did not see any in the pituitary, so I'm not sure exactly where they were visibile in the subcortical (though I know from reading so far, that not all may be visible anyway). A few nights before the blindness occurred, I had a "burning face" sensation, but I'd had a chemical facial treatment earlier that day, so I acutally blamed the treatment interacting with a ceiling fan.
Hey, am someone who like you, had hopes and aspirations before all of this. Thats not rare for people in their 20's. what to expect depends on the progression of your symptoms. Am not officially diagnosed with ms yet but am just about sure i have it. The future is still hopefull though for us as we live in a time of many discoveries and new therapies in the pipeline for MS. You now need to find out if your MS is relapse and remitting or Primary progressive. Is blindness the only symptoms you got?
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