Personal advice needed from my Hubber Family

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   PaulaHenry1posted 13 years ago

   Hi- I never thought I'd be asking for advice or referrals from HubPages, but I need your help. I haven't told my family yet but I found out today that I may have MS. I lost the vision in my Left eye completely about 2 weeks a go. Numerous tests including an MRI has been performed. I am 39. It has been determined I have Optic Neuritis from possible cause of MS. Has anyone had this optic problem and it was not associated with MS? I'm scared Hubbers....

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      LaMamaLoliposted 13 years agoin reply to this

      Don't know whether it is associated or not I'm afraid, but wanted to say don't be scared. I am sure that when you decide to tell your family they will support you, and if you decide not to, I am sure you will get support here. You need to find out as much as you can and to be honest I'm not sure this is the best place. You need to talk to a doctor or someone professional who has the expertise to answer all your questions. In the meantime though, big big hugs from London.

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      Jillian Barclayposted 13 years agoin reply to this

      Have never had optic neuritis and am not a doctor, but I have some clinical experience. Optic neuritis is inflammation of the optic nerve. Vision loss can be permanent or temporary and it is usually treated with steroids. Have seen patients who have optic neuritis. They have usually been told that it may or may not be the first symptom of MS. Sometimes, it goes away, with no damage to the eye and vision returns to normal as soon as the swelling goes down. Have you had a virus recently? Many times, that seems to trigger this condition, but usually, even with MS, it resolves.
      Like I said, I am not a doctor, so I am not sure. Just telling you what little I know.
      I am sure they have scheduled tons of tests for you. You are probably terrified, I know. I will not tell you to be calm and not to worry, because that would be foolish. Please keep us posted. Now we will worry with you. Maybe that can be of some little bit of help. People do care!

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      Marisa Wrightposted 13 years agoin reply to this

      One of my friends recently went through a similar thing.  Not visual disturbances, but peripheral neuropathy, possible cause MS.  She was experiencing temporary paralysis and numbness in her arms and legs.   She was very scared but her doctor reminded her MS was only a possible cause.  Long story short, it turned out to be trauma-related and she's now making a full recovery.  So hang in there.

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      nclark140posted 13 years agoin reply to this

      Wow, what a story. Listen, as I am both a RN and I have MS, I have a special kind of empathy for you right now! Hang in there. It's been a couple of weeks since for first posted this. So, maybe all is well. Either way hang in there!

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   WryLiltposted 13 years ago

   How terrible!
   
   I can't help you on that one sorry,
   
   I have a friend with degenerative MS, but she doesn't have eye problems.

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   frogdroppingposted 13 years ago

   Paula I'm sorry, I don't have MS or any real knowledge of it, other than scant info from a friend that's got it. I'm not repeating it because you're two different people.
   
   Try not to let fear become the abiding reaction. Arm yourself with the knowledge that you lack. Ask questions of your medical professionals - they will be used to dealing with patient's fears and worries.
   
   And maybe consider turning to your loved ones. That's a always a good source of strength and I'm sure someone around you will help you to cope with this new phase in your life.
   
   I don't wish to sound preachy and apologise if I do. But - I once became very ill, which I know is a lot to cope with, and almost fell apart at the seams. I didn't have the support (then) that I know I've got now and my way of battling the fear of 'what if?' was combatted by way of seeking the knowledge that I lacked.
   
   I'm sure you'll be fine once the news has sunk in and you can start to work with your diagnosis, rather than against it.
   
   I send you the most sincere best wishes - you will cope with this I'm sure

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   ADDHomeposted 13 years ago

   I am sorry to hear of your diagnosis, but please don't be scared.  I have three rather close friends who have MS, and in many ways it has been mostly just an inconvenience in their lives.  There are many factors that determine how it will play out, and the best way to keep from getting scared about it is to learn as much about it as you can.  Ask your doctor every question that comes to mind.
   
   The one thing that I can tell you for certain right now is that in these three cases I know, other stresses in their lives will cause the MS to flare up (not sure that's exactly the right term to use), so one of the best things to do is to find ways to reduce stress in every area of life as much as possible. 
   
   But that doesn't at all answer your question about other possible causes of Optic Neuritis.  I'm sorry that I don't really know how to answer that.  I just wanted to give you some words of hope about the overall situation.  I'll be thinking and praying about this.  Keep your chin up! {{{hugs}}}
   
   ETA:  The other posters are right, of course.  There are varying degrees of the problem, and I don't want my words to sound overly glib about something that is serious; the very best way to be confident is to learn, learn, learn.

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   psycheskinnerposted 13 years ago

   If you are not getting what you need from a doctor I would suggest trying here: http://www.nationalmssociety.org/index.aspx

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   SomewayOuttaHereposted 13 years ago

   here it is....

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   BenjaminBposted 13 years ago

   That definitely sux.sorry to hear. The good news though is if it is MS they have made many advances in treatment to include one I heard of in passing that will not cure you for it but will stop it in it's tracks and prevent it from damaging you further.

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   SomewayOuttaHereposted 13 years ago

   Hey Paula!...scared eh..i'd be too...i don't know enough about MS...you could also contact your local MS Society...they'll have all kinds of info for you and will know how to help in all kinds of areas such as how to handle the shock of the news you've just received.  I'm thinking about ya anyway - here's a big cyber hug for you........

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      PaulaHenry1posted 13 years agoin reply to this

      *hugs*

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   Lifeallstar1posted 13 years ago

   Paula, I'm so sorry. I know it is scary. My mom is 41 and has MS and optic neuritis which they feel is due to the MS. Do they think you have relapsing remitting MS? Did your eyes get better? Did the eye doctor think you've had optic neuritis in the past or is it active right now? Sorry for all the questions. MS is so involved and everyone is so different with what kind they have, what signs and symptoms, etc. I can answer any question if you want to know anything from someone who has it and has researched it for 20 years now. That was when she had her first crazy symptom. She woke up one day at 20 and could not walk but it lasted a few hours and it went back to normal. That's why I say MS is so crazy and varies person to person. She wants you to know to try not to panic and the link you were given is good. She said she can answer anything you'd like to know from her experience and to know you will be okay. There are many different types of MS and there are so many treatments to help it not progress. Sorry this is so long but if you have any questions about anything to please let us know. You are not alone. We will help you find the answers and help you with anything you need. We can give you more links as well to do research. Anything you need just ask, ok? Jess

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      PaulaHenry1posted 13 years agoin reply to this

      I am going to follow you so I know where you are---thanks Lifeallstar and please thank your mom as well and let her know she is in my thoughts.

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         Lifeallstar1posted 13 years agoin reply to this

         Paula, you're welcome! Please do not hesitate to ask any questions about anything.  There are many things it could be. MS has many crazy symptoms that come and go. Other conditions have crazy signs and symptoms too. The doctor will start ruling out things to narrow it down. A clear cut diagnosis can take some time. It can also get frustrating so hang in there and please contact for any reason whatsoever. Your symptoms that you mentioned in the list below can indeed be MS or something else. That is why you'll go through the ruling out process. You have medical background so you know about that. My mom does too which she felt was very helpful during the process and even now. She feels that has helped her stay as healthy as possible. She has her problems but you would never know by looking at her, that's for sure.  I wish you the best of luck and  you are in our prayers. Please keep us posted. Jess

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    donotfearposted 13 years ago

    Paula,
    What other symptoms are you having? There are diseases out there that MIMIC MS & wrong diagnosis are made all the time.  Please think about symptoms you may, or may not have. Remember, not all lab tests are accurate, either.  Many diseases must be a clinical diagnosis. Would you be willing to list any of your other symptoms here?

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       Lifeallstar1posted 13 years agoin reply to this

       That is exactly correct. So many things can be related to something else plus lab tests and other tests are not always accurate. That is what my mom was just saying. Sometimes they think you might have it  and you don't or vice versa.  that happens a lot  so its really important to write everything down and even start writing down things daily like a diary so the doctor will see any patterns and things. Also see  top specialists for each problem. See an MS specialist and get their opinion and since I only know of your eyes, see a doctor that specializes in optic neuritis. Doctors are key and you need the best for many issues. One doctor will not do it. You need second and third opinions. If you need help with that we can get you referrals. Again, anything you need just ask.

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       donotfearposted 13 years agoin reply to this

       
       The main reason I mention this is because many, many illness are misdiagnosed when the person actually had Lyme Disease. One of the top misdiagnosis of beople with Lyme is MS...then fivromyalgia, chronic fatigue, lupus.  If you want to know more, I have written a narrative on my hubs about my battle with the disease & what you have is a symptom. Docs miss it all the time because they don't know hoot about Lyme. Anyhow, take care of yourself & build your immune system!

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11. 73

    livewithrichardposted 13 years ago

    Hi Paula, a couple years ago I was right there in your shoes. I was diagnosed with Ocular Myasthenia Gravis, which is a form of MD.  That's not the worst of it though, one of the treatments caused me to become Diabetic.  This was a life changer for me.
    
    I'll be honest and tell you that for the first few months I fell into a depression. I was 39, 50 pounds heavier than I wanted to be, and walking on eggshells to keep from being laid off from my job.
    
    Then one day something snapped. I realized I was being selfish thinking about myself. I refused to let diabetes or MD beat me. I was on a mission to get healthy. I completely changed my diet and began an exercise regimen.  It was hard because most of my diet was habit foods but I stuck to it.
    
    Within a few months I was back on top of my game. I volunteered for the layoff so my friend who had a small family would keep his job, and I started my own business.  I'm eating healthy and lost 40 pounds. Something very rare happened, I stopped taking insulin injections and was placed on the pill form though my sugar levels stay within normal ranges even if I'm off for a few days. Oh, and I'm engaged to be married to my high school sweetheart.
    
    My point is, don't fall into the trap of feeling sorry for yourself.  Embrace your disease and do what it takes to stay healthy. Enjoy life, don't fear it. The 40's truly are the best years of my life.

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       PaulaHenry1posted 13 years agoin reply to this

       You are an awesome person- thank you for the inspiration and respect to share your story.

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    Mighty Momposted 13 years ago

    Hi Paula,
    Thank you for sharing your personal vulnerability here with us.
    I think you can see from the outpouring of support and information that the hub community is here for you.
    And many of those posting have direct or at least firsthand experience with your symptoms.
    I can't speak to MS or your optic neuritis. However, I can ABSOLUTELY  speak to the need to do your OWN research. Comb the web. Talk to everyone you can. Do not rely strictly on one doctor. Get second opinions. There are way too many wrong diagnoses out there and you don't want to be living in fear of impending MS when (as Jillian Barclay pointed out) it could be the result or a virus and easily treated with steroids!
    Good luck and please do keep us posted on what you find out and your progress. MM
    
    BTW -- note to livewithrichard. What an inspiring story! Glad to see good things happening to you and congrats on marrying your high school sweetheart. That's neat. MM

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       livewithrichardposted 13 years agoin reply to this

       Thanks Mighty Mom.  I really believe in Karma and the power of positive thinking. My fiance and I believe that negative thoughts and actions attract more negativity. Who needs that?

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          Joe Badtoeposted 13 years agoin reply to this

          Way to go Richard
          
          Karma is good
          
          and your honesty is admirable

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    Sufidreamerposted 13 years ago

    Hi Paula,
    
    That is a tough diagnosis - it must be frightening for you.
    
    As Jillian said,optic neuritis is not always associated with MS - it can strike anyone and it is not always permanent. There is some hope there, although I don't want to get your hopes up too much (I have no medical training!)
    
    If it is MS, there are plenty of resources - my mother has the condition and is a member of a few support groups. If you do have the condition and they have caught it early enough, some of the modern drugs do a good job.
    
    On HP, there are a couple of hubbers with MS, both lovely people:
    
    http://hubpages.com/profile/Harvey+Stelman
    
    http://hubpages.com/profile/Jen's+Solitude
    
    They have some good Hubs about their experiences
    
    Richard - Good lad! I second MM's sentiments

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       PaulaHenry1posted 13 years agoin reply to this

       Thanks- is the second address correct? Says it is not valid.?

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    PaulaHenry1posted 13 years ago

    I first must apologize. I did not know that my post was moved to Health so I assumed (never do that by the way) that they deleted it for "medical advice" or something like that. I posted a thread that was kinda rude about deleting my post and I shouldn't have. So I am sorry about that.
    
    THANK YOU ALL for the kind words and support. The link was extremly helpful as well! I am trying not to worry bu as a a Nurse,  I am all the more scared that they are correct because I am familiar with the symptoms and prognosis.
    But, a few asked what other symptoms I have and they are this:
    1. Numbness to one side of the body (thought I was having a TIA- ministroke, Doc said I was 'too young for that' -
    2. Loss of vision to one eye.
    3. blurry vision
    4. Tingling and pain in body
    5. Tremors that come and go.
    6. Forgetful and confused
    7. Fatigue- all the time!
    8. Dizziness that comes and goes
    9. Sharp shooting pains in my head and eye.
    I have a appointment Nov 8th - yes that far away- at the U of M for further testing and diagnostics. I also called my primary to see if any tests could be done here in the meantime.
    Thanks again everyone! I would love to hug each of you for taking the time to support and share. But for now here is a 'BIG HUG'! You have restored my faith in HP! and my HP Family.

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       bayareagreatthingposted 13 years agoin reply to this

       Just thought I would give you a link to a support group that is active and sympathetic to your situation:
       
       http://www.dailystrength.org/c/Multiple … port-group
       
       God Bless you. You are not alone in this.
       
       Laura

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    donotfearposted 13 years ago

    Yes, you have symptoms of MS.  But you also have all the symptoms of Lyme (Borellia Burgdorfer). It is grossly under-reported. The CDC states that for every confirmed case there is approximately 10 more cases unreported. Most people don't remember getting bitten by a tick & almost all regualar MD's know nothing about it other than what the IDSA tells them, which is biased & flawed. Only a Lyme Literate Medical Doctor can treat it effectively. 
    
    You do not have to have the bulls eye rash to get it, nor do you have to live in the NE. It is EVERYWHERE & has surpassed AIDS as the fastest growing infectious disease in the U.S. It is called the "great immitator". The Lyme Spirochetes are amazingly smart & can hide deep within your tissues, especially the brain & joints.
    
    The tests are not reliable, the ELISA test is useless. If you request a Lyme test, ask for a Western Blot to be done by Igenex Laboratories (www.igenex.com). They test for more bands: however, even the CDC states it is a clinical diagnosis & not to rely on testing.   
    
    Please understand, I'm not crazy but I know first hand how grossly misdiagnosed this illness is. I have extreme pain in my elbows/arms from the effects of it, & I started treatment early on. It's NOT curable in 4 weeks of antibiotics.
    
    Please go to http://www.ilads.org to learn more. I wouldn't have spent time posting this if I didn't feel it was urgent. Or you can read my hubs on it. I hope you get much better!!

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    RNMSNposted 13 years ago

    Paula, I have been following this and its way past nov 8th...what was the result of the tests? did you get an MRI, and optic nerve scan,blood work? did you get put on steroids?
    are you diabetic? have you been treated for tuberculosis? have you had any infectious diseases such as cat scratch fever or lyme disease as donotfear is saying?
    only 15 to 20% of persons with optic neuritis turn out to have MS...We all love you and are all praying for you....much love to you barbara b/rnmsn

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