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465975 tn?1224231635

Hello everyone

Hello to everyone. It has been a while since I have last posted. I have been struggling with everything going on. This will be a bit long but I would like to update you on how things are going. It seems I have always gotten a "shot" of confidence and strength from all of you here.
  I have had very little change in any of my symptoms. My double vision is the same. My energy and mental state about feeling the way I do has not changed. I am still very sore and lacking energy on a daily basis. Two weeks ago I was taken to the hospital by ambulance for one of the worst headaches I have ever had in my life. I thought my head was going to explode. As always the tests that they ran were negative and they could not tell me what was wrong. Big surprise......I did finally get an appointment with another neuro opthamologist on monday. She was great. Tuesday I went back to the hospital where I had my surgery and had another LP. She also ordered a battery of blood work. I have a follow up appointment on November 10 to discuss the results. She is concentrating on MG as being the root of all my problems. I must be honest and say I am just waiting on the dead end that has plagued my search for relief.
  I promise to try harder at updating and keeping you all posted. I want to thank you all in advance for your support and the confidence I get when I come to the fourm and read about everyone else. Take care and I look forward to seeing you all.
Blessing to everyone,
Mike      
5 Responses
198419 tn?1360242356
Hi there!

I was thinking about you! I'm so glad you posted!

Sorry to hear though that you have had no relief.  But, it's promising that this Dr. is good. What kind of surgery did you have? And, what did they do about your headache?  Are you still having them badly?  

It is nice to see you here Mike, and I'll say a prayer for you that this search is not plagued, but blessed with answers and that you begin to feel better each and every day.

Oh, one last question, she thinks the mG is the cause of the doublevision too?

ttys,
Shell

281565 tn?1295982683
It's so good to see you posting Mike.
Sorry I didn't see this post when I messaged you.

I'm praying that you finally get your diagnosis on Nov.10th, I'm sending prayers that all works out for you.

I'm with Shell though, is the double vision part of MG?

How's the headache, I hope it has gone away never to return!!

Hugs
Moki
147426 tn?1317265632
Hye, Gut!  It IS good to see you!  I'm glad you're back, but I was hoping for better news.  To think about one of the questions, yes MG can cause double vidion, but you would expect that it would vary in intensity, being better at some times and worse in others.  This is because the double vision would be due to one eye muscle being weaker than the others.  If it is weak due to MG, then it would be weaker the more fatigued you are.  If I remember right, you have double vision all the time.

Is the neuro-ophthalmologist doing this whole work up, including the order for the LP?  Do you know what she is looking for in the LP that would be related to MG or are they keeping MS in mind?

What kind of tests were in the battery of blood work?  Was it for the antibodies of MG or also for the MS mimics?  I'm still kind of confused here trying to understand what they are looking for.

But, I'm so glad you are back!  Stay with us.  'Kay?

Quix
465975 tn?1224231635
     Thanks to all of you for the responses. Shell, the headaches have still come but thankfully not in the intensity that was present before. They seem to be starting near or around my eye and spreading from there. I too hope that I have embarked on a trail that leads to some answers. Thank you for your kind response.
  Moki, I had two fusion surgeries. They were within six months of each other. It has been almost two years since the last one. I have not been the same since. I have been fused at C2,3,4, and the second one was at C5,6,7. There is a small spot or what I would say is a lesion around C3. The doc says the signals are being interrupted and causing my problems. Well, I have not been getting any better, I seem to be getting worse. This is why I am so upset. I am seeing a new Neuro-opthamologist, and have an appointment with a new Neurologist on the 28th of October. I hope I am on the right track. I am starting to feel I am. Thank you for keeping me in your thoughts. I am saying extra prayers for your father, that he comes through with flying colors. I am sure he will do very well.
  Quix, it is nice to hear from you. I hope you are feeling better. Yes you are correct. I do have Double vision all the time. I think it is constant, I can tell no real difference really. My Neuro Op has ordered all of these tests, including the LP. The reason for the LP is because that the last one was "normal" except the pressure was 325. Normal is 120. Both neuro's and the Neuro- Op I have seen in the past have failed to realize this has a direct relation to double vision. The blood work consisted of MG  with the "musk" test included, and the antibodies of MG. She also ordered the mimics of MS as well, hence the nearly three week wait for results. She has ruled out nothing, including MS. I intend to stay around and I so appreciate the response from you.
  Thank you so much for the response and interest all of you have shown me. As I said in my post coming to the fourm always gives me a shot of confidence. I have been in a real down mood for sometime now. You all have helped me change that. Thanks so much again. Take care all of you. I hope I can update you later with good news that things have started into the right direction.
God Bless all of you,
Mike  
          
428506 tn?1296557399
Hi Mike,
I can totally relate to your feelings about needing a shot of confidence.  Being undiagnosed and unwell is a very high stress situation.  I know I recently just felt really overwhelmed, and was growing really fearful about my career and future and all of that.  It comforted me to know that the forum was here.

Of course it never helps when the doctors say they just don't know.  I know I rely on the forum to help during those times.  I am fortunate to have loved ones and familty, but no one really "gets it" unless they've gone through a similar path.  I hate to admit it, but I know before all of this I was much less compassionate.  Guess I got my comeuppance!

I've had really mild double vision - or ghosting - since May, and of course my eye exam is perfectly normal and no one knows why.  It is just another little reminder that something's not right.  I know your double vision is much more pronounced, it is amazing they can not nail down the cause!

I recently had a large amount of blood work ordered by a rhuematologist and am waiting for those results.  I hope for both of us that the blood tests lead somewhere toward effective treatment!

Take care,
~W
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