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This is fun......NOT

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    #1

    This is fun......NOT

    Hi
    I've been dealing with limbo land for many years. I am currently trying to get the funds together to get my SP. My MRI came back clean so no lesions. This is the 12th doc who has said possibly ms. Aside from the fact I've lost the ability to do my job and I am now on the vision loss freight train, waiting to save the funds to see a corneal specialist.
    I don't know what is wrong with my body but it's funny reading so much of what you are all going through I am dealing with. I don't have insurance so I have to wait.
    Tags: None
    #2
    Hi lovelyepona: If you have been diagnosed with possible MS by 12 docs, why not stick with one instead of going through 12 of them? Your MRIs are clear which means right now you do not have MS. You do not need to go to a corneal specialist to diagnose ON. A regular ophthalmologist can diagnose that. They are sending you to a corneal specialist to look at your corneas for a problem with blurred vision, not your optic nerve. That is a different problem altogether. Not MS. Corneal Specialists do not diagnose nor treat MS.

    I hope they find our why your eyes are blurry if that is the problem.

    Take care
    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

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      #3
      Uh huh brain not processing speech right today. I meant it's weird to read different people having the exact same symptoms I am.
      I've had days the pain was so bad I didn't think I could stand it. The muscle spasms, the forgetting words, wetting myself, and all the other wonderful things my body has decided it want/ doesn't want to do.

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        #4
        Because moving and a lack of coverage forces me to go who ever they chose. Even before I lost my insurance it wouldn't cover much of the testing.
        They are doing a spinal tap to check for the proteins. After many of these spells including one that landed my butt in the hospital.
        Blurred vision isn't the reason they are sending me to a corneal specialist. They found something on the back of my right eye lens. I don't think it's ON. Though I have had spells of loss of complete vision.
        I'm only going on what the neurologist have told me. They've had me to two different ones this year.

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          #5
          Why are my post not posting. As per the neurologist though it may not be MS, lesions don't always present themselves. I would love it to just be a B12 deficiency but it's not.
          BTW 12 doctors include a few ER docs and three separate neurologist.

          Comment

            #6
            lovelyepona: Hi: I didn't mean to upset you! I do understand moving around and the ER neurologists. I am glad they are doing an LP on you. That will clear up a lot. I am also glad they are sending you to a cornea specialist for the spot they found on the back of your cornea...that sounds scary. Let us know how that goes, ok?

            Your posts are sometimes slow getting approved because volunteer moderators, all of whom have MS, have to go over them and approve them. Sometimes it can take a half a day, although that is unusual. Today, I happen to be one of the only ones working. So, I apologize for everything being so very slow. It is usually not like this.

            Your LP will clear up a lot of unanswered questions for you. It will not only check for proteins, but will also double check for some other CNS infections like Lyme, CNS cancers, and other issues. I am glad they are checking for lupus. I in no way meant to imply that nothing is wrong with you. In fact I hope they can get it all sorted out and you can start to feel better very soon. I hate that you have no insurance. That is the worst. My mom has no insurance, and some health issues, so I know how hard it is to navigate the system like that. I hope you can benefit from the marketplace and the subsidies so that you are not without for very much longer.

            Please keep us informed about your journey and how everything goes.

            Take care
            Lisa
            Moderation Team
            Disabled RN with MS for 14 years
            SPMS EDSS 7.5 Wheelchair (but a racing one)
            Tysabri

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              #7
              They also did ANA and a few other tests. Waiting on the results.

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                #8
                Well I got my blood result back.
                ANA negative
                SSB positive (la) 3.4
                SSA positive (ro) 3.3

                Not sure what it means but I can't get the doctor to respond.

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                  #9
                  Ok those aren't positive. They are with the normal range.

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                    #10
                    SSA positive is not normal. That is what I tested. If ssa and ssb are positive then you tthan you have an autoimmune disease. At least that is what my Doc told me.

                    Comment

                      #11
                      According to the test results they were under 20 units and those means a negative for autoimmune disorders.

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                        #12
                        Tonight is not a good night. Tingly spot on my scalp, my foot both burned and had sharp pains. The pain is now in my entire right leg. My right arm no longer straightened completely and hasn't for week but it's worse tonight. Burns and hurts like hell. My right side of my face is numb and my vision is blurry intermittently. The muscle spasms are getting pretty bad.
                        I wish I had something to make the pain tolerable.

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                          #13
                          Sorry if my writing is hard to understand. I apparently am not seeing what I am writing and I forget words.

                          I have a weird discolored patch between my breast that went away and is now back and getting bigger. The burning has subsided to a tolerable stage though so that's good. The muscle spasms aren't as bad now.
                          I am so frustrated at this point. I've had doctors see this stuff in action. The slurred speech, coordination, cognitive issues, limbs not working working right, face drooping.

                          All my test are coming back within normal range. The doctors don't know what's wrong with me. I lost my insurance right when this stuff really started so I'm having to try and deal with that.

                          I can't work in the heat anymore because it puts me down for days. I haven't a clue what to do anymore and am getting depressed. I feel like I am losing my mind and people get mad at me because I repeat myself over and over. I will tell someone the same thing two or three times and not remember telling them. I am now so clumsy.

                          I say the wrong words like when I was telling someone about a truck and said elephant. Or when I try to tell someone left or right and while pointing in the right direction I say the wrong word.
                          But it's all in my head or its depression. Or they don't know because I don't fit in the right hole.

                          ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

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