New here

[Melissa-b]

I have legal blindness and have been fighting so odd stuff in doing research MS might fit well. Lags go into trimmers and make it hard to walk the hurt and almost feel like they are some what asleep this is not all the time I have the problem in my hands and have dropped stuff. I have a vision change that I know it not due to my eyes. I fight IBS and there are time my whole body hurts. I am always sleepy and I been told that my EEG looks like I am having Seizures and there is no reason for that I have a new Nero and I hope he can help me find out that is going on. Any thoughts???
Thanks,
Melissa

[22cyclist]

I have legal blindness and have been fighting so odd stuff in doing research MS might fit well. Lags go into trimmers and make it hard to walk the hurt and almost feel like they are some what asleep this is not all the time I have the problem in my hands and have dropped stuff. I have a vision change that I know it not due to my eyes. I fight IBS and there are time my whole body hurts. I am always sleepy and I been told that my EEG looks like I am having Seizures and there is no reason for that I have a new Nero and I hope he can help me find out that is going on. Any thoughts???
Thanks,

Melissa

You have asked a wide open question. First, why are you legally blind?

Second, there are SO many symptoms that are "like" MS, that is why you can not be diagnosed on symptoms alone.

have you had an MRI? if not you may need one. Do these symptoms come and go? If so, how long do you have them, what, if anything, brings them on, and how long do they last. How long between attacks?

This will help narrow down a cause.

Hope the new Neuro is a good fit for you!
Lisa

[Melissa-b]

Answers


The legal blindness is due to Albinism. There pain can last for just a day or a few weeks. I was told sometime in 2006 that my doctor thought I may have MS but once the MRI was done it was clean and it was never brought up again. It the past year the pain tingling and numbness are something I deal with at lot. One morning I woke up and I just could not see like I use to. I went to my eye doctor who sent me to others but the eyes were fine. I dropped from my normal 20/200 to 20/400 and this is a big change. Now I will have spells where the sight is not clear to me like it unforced and nothing I do fixes this. This can last for hours to as many as four days. I have not had a MRI as of yet since he is still looking over some of the tests he's done. I should find out about that on the 10th. The times where my whole body hurts van last for days. I am thinking that things will be harder to test since my vision is not good anyways but the more I read the more that fits. I am hoping to find something out soon. Since I have a major knee problem I am using a scooter to get around where I am doing a lot of walking this does help. The word tired is something that I am always say no matter the amount of sleep. Not sure if age help but I am 26.

[22cyclist]

The legal blindness is due to Albinism. There pain can last for just a day or a few weeks. I was told sometime in 2006 that my doctor thought I may have MS but once the MRI was done it was clean and it was never brought up again. It the past year the pain tingling and numbness are something I deal with at lot. One morning I woke up and I just could not see like I use to. I went to my eye doctor who sent me to others but the eyes were fine. I dropped from my normal 20/200 to 20/400 and this is a big change. Now I will have spells where the sight is not clear to me like it unforced and nothing I do fixes this. This can last for hours to as many as four days. I have not had a MRI as of yet since he is still looking over some of the tests he's done. I should find out about that on the 10th. The times where my whole body hurts van last for days. I am thinking that things will be harder to test since my vision is not good anyways but the more I read the more that fits. I am hoping to find something out soon. Since I have a major knee problem I am using a scooter to get around where I am doing a lot of walking this does help. The word tired is something that I am always say no matter the amount of sleep. Not sure if age help but I am 26.

Well, yours is a complicated case. Do you have pain with eye movement and does the decreased vision come on slow or pretty fast? Is there a blind spot that you noticed, or just more blurry in all directions?

Are you always tingly and numb or does that come and go? How long is it around and how long is it away?

You are the right age for MS, but so many other things too so try not to worry until you have to.

Hoping for the best!
Lisa

[gowiththeflow]

Welcome to Limbo - you are in great comapny!

Hello Melissa and welcome. I am undiagnosed like you, and pretty new here at msworld and the forums. I have found so many people here willing to reach out to others despite their own challenges. Everyone has been friendly and helpful. This is a place of hope when it is very much needed! And laughter by the boat load.

Does the large bold type help you to read, or do you have high tech stuff to help you use the computer? Let me know, so if I run across you on the forums I can make it as easy as possible for you to get a reply. I am aware of legal blindness because my amazing physical therapist has a degenerative eye disease and only has slight vision left in one eye, at a very small space and angle.

I have learned many folks with eye challenges are around, so even in the chat rooms, everyone is asked to type in capitol letters, I bold mine too.

Like so many here, seems you have an ABC list of challenges to deal with. I hope your new neuro is able to help you get sorted out, and that you can find solutions that work for you.

No one has figured me out in 3 decades, and my label is that i am "complicated". When i hear that i say "Thank you very much. Hope you enjoy a good puzzle." Have decided I was mucking about in the polluted end of the gene pool when i should have been swimming in the deep fresh waters instead. lol.

I am finding that the forum section called the wellness room is very helpful to me. I can use the good info there to actively help myself as much as possible. Worth checking out!

again, welcome!
from Flow.

[Melissa-b]

Answers


Yes the bold does help I use an iPad and I can make things much bigger on here and it also has text to speech so that's helpful. Yes I have a blind spot on my right side it is in the side vision. I have a hard time seeing things that are coming up on my right side. The tinging comes and goes when it feels like it. The pain is the same. There are times when my right eye kills me to move it and that is when I tend to notice my vision at its lowest point. The bullring comes and goes but I seem to notice it in only the close up. I may have it a distance as well but might not be able to tell. I have had my Legs hurt so bad I been in tears and had to leave work. I am hoping I will have answers soon since this is getting old quick. Thanks for the thoughts I am open to ideas here since I need to do what I can to make things better for me.

[22cyclist]

Yes the bold does help I use an iPad and I can make things much bigger on here and it also has text to speech so that's helpful. Yes I have a blind spot on my right side it is in the side vision. I have a hard time seeing things that are coming up on my right side. The tinging comes and goes when it feels like it. The pain is the same. There are times when my right eye kills me to move it and that is when I tend to notice my vision at its lowest point. The bullring comes and goes but I seem to notice it in only the close up. I may have it a distance as well but might not be able to tell. I have had my Legs hurt so bad I been in tears and had to leave work. I am hoping I will have answers soon since this is getting old quick. Thanks for the thoughts I am open to ideas here since I need to do what I can to make things better for me.

You may need another MRI since you haven't had one since 2006. In MS, at least RRMS, tingling, numbness, tend to come, last 1-3 weeks, then go for a least 1 month to count as a true exacerbation. Now that is not to say that we do not have tingling and numbness daily.

It depends on if we have lesions already. You may need a VEP to see if you have damage to your optic nerve, and it would be best to get it when you are having these "spells" of decreased vision above your normal. They can also do a visual field test to test for a blind spot.

Like I said yours is a difficult case, but not insolvable. The blind spot and pain sound more like ON, but ON lasts more than 1 day. I know you said sometimes yours lasts more than that. On the days you have just the decreased more than normal vision perhaps it could be your nystagmus if you have it.

Write down the best you can when your tingling comes, where it is, how long it lasts, how long you don't have it, and your eye symptoms the same and take them to your neuro when you go. This will give them a better picture about your status.

Good luck!

[Redwings]

"E=22cyclist;1385182]In MS, at least RRMS, tingling, numbness, tend to come, last 1-3 weeks, then go for a least 1 month to count as a true exacerbation.[/QUOTE]

That didn't come out quite right.

In MS, an attack or true exacerbation is the onset of new, or worsening of existing, symptoms lasting at least 24 hours in the absence of fever or infection. To count as a new exacerbation, it must be separated from the previous attack by at least 30 days.

A true exacerbation is determined by how long the symptoms are present, not by how long they're gone. The length of time symptoms are gone determines whether the onset/worsening of symptoms constitutes a new exacerbation or a continuation of a previous one.

The article from the Annals of Neurology describing the 2010 revision of the McDonald diagnostic criteria for MS (including the definition of an attack/exacerbation/relapse) is available at http://onlinelibrary.wiley.com/doi/1...ana.22366/full.

A condensed version of the 2010 McDonald diagnostic criteria is available from the website of the National Multiple Sclerosis Society (www.nmss.org) in the form of a tipsheet.

Melissa, it sounds like your eye doctors may not have worked you up thoroughly enough to find the cause of your sudden change in vision. Looking only at your eyes isn't enough. Your eye doctors should have investigated further or referred you to a doctor who would.

You said that your eye doctor referred you "to others." Was one of those "others" a neuro-ophthalmologist? If not, then it would be in your best interest to ask your neurologist or ophthalmologist to refer you to one. Your case is complicated, and it may take a superspecialist like a neuro-ophthalmologist to properly test you and find a reason for your vision change.

The rest of it your neurologist will have to work through. It may take a while to sort through all of the information. Hang in there!"

[22cyclist]

Redwings is right

What I said did come out wrong. She is absolutely right. 24 hours signifies the length of an exacerbation, the beginning of one, or one all together, but most neuros want more. Also, I would like to say that Redwings is an expert in all things vision because she has a degree in the field has and worked in it, so I defer to her on these questions always.

Cog-fog can creep up on us any time- LOL! Good luck on your journey in figuring it out.