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| I love the Zuska, certainly sets you apart from anyone else I have ever
met 
Thank you for taking the time to condense all you have said into a easy
post for me to read. I have a cousin with MG but we hardly ever talk,
one of those cousins down on the 3rd level removed 2 times by parents
divorce, etc, plus many miles away.
I have the patient sheet for the plaquinel, and doc is starting me out
very slow as I am chemically sensitive and even cutting that dose in
half to build up slow rather than shock my system.
I've only taken one dose so far. I am very fatigued and muscles so very
tired and sore it hurts to even have a shower spray onto me.
I wish you well Zuska, I have much empathy for all you and everyone is
going through.
hugs,
Zinn
Zuska wrote:
> Zinn wrote:
>
> Hi Zinn ~
>
> Yes, it does start with a Z ... Zuska is Slovak for Susan!
>
> I did at one time believe that the Plaquenil was the culprit regarding
> the muscle weakness, but everything I have read indicates that if this
> was the case, it would clear my system within two months. It will be
> two months in about a week, and the weakness continues to get worse.
>
> Even if it was a result of the Plaquenil and was not going to get
> better, I don't think it would continue to get worse, having stopped
> the Plaquenil. Also, the muscle biopsy did not show any indication that
> the Plaquenil was the culprit.
>
> Testing for Myasthenia Gravis is going to be started, but they were
> unable to schedule the third EMG until October 2. After that, there are
> two medications that are considered 'diagnostic.' In other words, if
> they think you have MG, they give you this medicine, and if you get
> better, then they know that MG is what you have. One medication is
> given by IV, the other is in pill form. I don't know which the doctor
> will order, but I am ready to do just about anything to get to the
> bottom of this!
>
> What I can tell you about Plaquenil is that before I was taking it, I
> had a lot of joint pain and a great deal of fatigue. As soon as I
> started the Plaquenil, I was virtually pain free, and the fatigue was
> greatly improved. Unfortunately, at about the same time this whatever
> it is started, so I don't think I recieved all the benefit possible
> from the Plaquenil. If I had my choice, now that we know it was not the
> Plaquenil, I would start taking it again, but my Rheumatologist does
> not want to do that until they have a diagnosis for the muscle weakness
> thing ~ and I know that she is correct to wait, since whatever
> treatment I end up with for the muscle condition might react with the
> Plaquenil.
>
> Zinn, I hope this puts your mind at ease. I was told that only about
> one percent of people who take Plaquenil long term have a bad reaction
> ~ and that is long term. So, I would recommend that you get a copy of
> the Patient Information that comes with the medication and read it
> carefully. That way, you will know what to look out for in the way of
> side effects. I will never start any medication again without doing
> that!
>
> Take care ~
>
> Susan aka Zuska (Snowey95@aol.com)
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