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  • Deana,

    I've been gone so much lately, I need to catch up reading. Has your fiancee been back to the doctor yet? (I'll read and see if you've posted about it) xo
    Remind Jeff that VERY consistently, it is found that the longer it takes for a person with neurological conditions to be accurately diagnosed, the slower their progression is, whether or not it is a treatable condition.


    You guys are really being put through the wringer! I wish I had anything to say that would help him (and you). I'm sorry his neuro was rude, as a generalization, most neuros are not strong in the personality department. There have actually been discussions about this on the forum, it is common to have cold or rude or condescending or impatient or any combination of these as far as how neurologists interact with their patients.

    Muscle weakness and cramps can be a side effect of taking prednisone. The problem with your Jeff wanting to stop earlier than the plan, is that these side effects can happen to anybody with any illness or no illness. If he has symptoms such as dizziness, he should most definitely call ANY of his doctors and let them know.

    I know this is just a terrible experience for the both of you, and I truly hope its not in vain, that upon evaluation there is information gained.

    I don't know, but wish I knew about the reflexes. Mine have fluctuated. The neurologist doesn't make a big deal of it, and I have no idea if its significant at all. If he feels worse on the prednisone (whether or not he realizes he is stressed) probably has no bearing on if it is a MND. I say that because I don't think that prednisone would have an effect on it either way. (again, feel versus fail) I know he tried mestinon in the past and it made him feel worse. It also did that for me. I wanted to tell you that there is a prosthetic device that can be created if his nasal voice is due to soft palate weakening. It obviously wouldn't help him "get" better, but as far as his need to use voice for his profession, it would help that. Canifet (Theresa) on this forum has had this made for her, and is pleased with how much it helps her.
    Thank you Deana
    We have our parents close by, which is of great support. Telling our little girls is just going to be so hard, I don't know how or when or what to say to them. They are 10, 7 & 5. Thank you for your prayer, I know God is with us, I just hope I can stay strong through all of this.
    Hi Deana,
    Yes, we just got home about an hour ago and it was confirmed today that my husband has ALS Bulbar Onset :( We are devestated but hopeful that it will be a slow progression. He is very early on in the disease and is starting Riluzole tomorrow. Thank you for checking in, I haven't been on here much over the last couple weeks because I was really focusing on the family, looks like we'll be here for the journey now though. Thank you again for your thoughts and prayers ♥
    I don't know if prednisone making his speech worse would be an indication of its affect on him. (casting about trying to find the right wording) I wonder if the stress caused by the prednisone, as in how it is making him feel, is what is making his speech worse. Does this make sense? On the other hand,I've read that sometimes a person with MG will actually be worse at first, until the dosage is adjusted. If his speech continues to worsen, it may not be a bad thing, because its indicative that something he takes into his body can have an effect on it. But still, just wonder if its the stress of the trial, KWIM?

    Keep in touch, xo

    I really feel for you guys. The prednisone, if it is a whopping dose (which is what he is on) should show some type of positive effect by the end of two weeks. Everything doesn't have to be better, just SOMETHING, one facet of what has been progressing with him. I would think that the 3-5 days is overly optimistic. During this upcoming week, one would think that if he was going to have improvement, that there could be some gradual sign.

    Remember—this is important— its not how he's "feeling", but rather if it helps something from "failing". If in fact he does have improvement, he would not have to stay on such a high dose (remind him of that) he would be cut down to a much lower amount, and other drugs would be added.
    My cough is better, still feel congestion at the bottom of my chest, but every day is improving. I actually have had pneumonia a couple of times, and understand that if I run a fever, I need to go in to the doctor. Funny thing, ever since I've been "sick" I've not had a cold! That's life, right?

    Hang in there, and write to me anytime. (you can also send me a private message if the forum system allows it, sometimes a person needs a certain number of posts, and I do not know what that amount is) xo

    It was good to hear back from you. I am doing great most of the time. Right now I seem to have gotten a bit of something in my chest and have a cough, but this has happened several times before with no dire outcome. My immune system works well. You absolutely add value just by popping in to chat now and again :) The sense of being part of a community is good for all of us. xo

    Hang in there, and tell him I KNOW what he's going through, and he can get through it. I was so jittery, couldn't sleep hardly at all. I hated all two weeks of the prednisone, but, my lack of response gave the doctors important answers. It was a real litmus test.

    Send me a message anytime, I'm always willing to listen, even if I have nothing of value to add.

    xo Diane aka Rose

    How is your fiancé? Did he go ahead with the prednisone trial treatment? Any results from it?
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