Med change and Diognosed scared😁
It's been a while
Hello everyone, I know I have not been on line for a while. Life has had many twists and turns for me. I am sure for most of you as well. I'm a year into my connective tissue disease and for the most part I was battling this disease with a very positive attitude. Last summer I was ok, even this fall and part of the early winter I was ok and than BAM!!!! I fell apart. I started to feel sick again. Tired, nausea bad headache, hard to swallow, losing weight, numbness tingling and my favorite fatigue. I went to the dr and he ran some neurological tests I tested for lupus migrans which came back positive, but everything else came back negative..(nerve test). Than I went to my rheumatologist and he tested me for a disease called Myasthenia Gravis disease which came back negative. However my ANA came back at 1:320 which I know is high. My dr started to ramble off that my connective tissue is more on the lupus side and that my aches are due to fibromyalgia He also mentioned that the plaquenil is not working anymore. He now switched my meds o chloroquine. My question is.
Can one have Myasthenia gravis even though your ana and nerve test comes back negative?
Is anyone on Chloroquine? If so can you please tell me the side affects that you are experiencing? I'm nervous to switch as my dr has said this is a more powerful drug with more side affects.
On a different note I did do the Lupus walk in NYC! i'm hoping to find a cure just like everyone else.
To everyone who is suffering, I hope you find sunshine at the end of the cloud. It's nice to be home.
I can't help you, my only thought is to do Internet research and discuss your fears with the Doctor
Sorry you are feeling bad again. MCTD is also called an overlap disease. It is when you have symptoms and positive test results of several AI diseases but none stand out as primary. Many Lupus patients have multiple AI diseases but Lupus is primary while the others are secondary to it. In MCTD they haven't found a primary. I THINK what your Dr was saying is that although you are diagnosed with MCTD he believes the Lupus may be Primary. As for the fibro, it is very common for us to have both. Some days my fibro causes more pain than my Lupus. Just another fun fact in our world
The Cloriquine is a older drug than the plaquenil so you do have to be a bit more watchful but some people find it more helpful. Make sure you go have an updates plaquenil eye exam so there is a new baseline for your eyes before you begin. They will have to keep an even closer watch on your eyes although we all have to do that with plaq anyway. Watch for any skin color or changes in your urine color. As I say often. Try not to worry. The damage from meds can usually be stopped by stopping the meds but the damage from Lupus can't be stopped without them.
Success is not final, failure is not fatal: it is the courage to continue that counts.