FAQ/Help |
Calendar |
Search |
Today's Posts |
|
Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
Reply |
|
Thread Tools | Display Modes |
|
07-07-2017, 04:27 PM | #1 | ||
|
|||
Junior Member
|
My results were----
Blocking - 35 Modulating - 88 and....... Binding - 1265.00 I had a transsternal thymectomy 7 weeks after my first symptom. My ptosis and blurry (not double) vision went away about 3 weeks after my surgery and 5+ years later I am still pretty much symptom free. The above test numbers were from a test done 3 years after my surgery. I've been told repeatedly that the number values do not reflect the severity of the disease, of which I am proof of. That doesn't keep me from worrying, but I'm so thankful to have had the surgery and to have gotten the results I did. I know the mg can reappear at any time, but I also know it could stay dormant forever. Lisa |
||
Reply With Quote |
"Thanks for this!" says: | AnnieB3 (07-07-2017) |
07-19-2017, 09:59 PM | #2 | ||
|
|||
Junior Member
|
My question is about MuSK but I don;t know if you can help Annie. I had a test years ago and was told it was negative. I had 0.02, and was 4 SD away from a result. Anything >0.6 is a result. So my question is ... could the low dose steroids I was taking at the time have affected this test ? The Neuro said "no" but somehow I can't quite believe... I have just reread the result and they mention that 3 SD is allowed ... so I basically missed a dx due to 1 Standard Deviation ?
|
||
Reply With Quote |
07-19-2017, 10:44 PM | #3 | ||
|
|||
Grand Magnate
|
I hate to tell a doctor that he is wrong. But he is wrong. Steroids, in a low, medium, or high dose, all affect the outward signs of MG (or other autoimmune diseases). They affect antibody tests and EMGs. There are some people on steroids who have high antibodies no matter what. There are some people who have a positive SFEMG even without symptoms!
The one thing about this stupid disease is that there is a spectrum of how it presents and how it tests. I know that doctors like their algorithms. How nice would that be if we all fit them? I don't have the energy to put up any articles (this summer is doing a number on me). But the science of this is sound. Are you on steroids now? If not, they should redo the MuSK—if your insurance will allow that. MuSK patients are just different than AChR ones. It is very important to know which one you have! I had a negative AChR test and then a positive one. There are both circulating and tissue bound (those busy attacking tissues) antibodies. This has MuSK listed, even though the descriptor says drug-induced MG! Drug-induced MG Here you go. Look under "cautions" in this Mayo site!!! MUSK - Clinical: Muscle-Specific Kinase (MuSK) Autoantibody, Serum This is just an interesting description of the different AChR antibodies and how they behave. Acetylcholine Receptor (AChR) Antibody: The Test I hope that helps! Annie |
||
Reply With Quote |
07-20-2017, 12:15 AM | #4 | ||
|
|||
Junior Member
|
Thanks Annie, I am going to read these again and reread and thankyou again. I hope the summer is not too severe for you. it is really cold here and that helps me so much. I am stunned to think I should have had a result 9 years ago ?? Why did I nearly have to die on the operating table with a respiratory crisis - to get enough data to convince the "experts". I have always felt that the MuSK result was odd... Yes, I have just recently had it repeated as now my new opthamologist has said MG... and my Physician argued against the idea then did a quick eye test ... and went ...hmm... and ordered the repeated tests. I am still waiting.. Yes, I am still on low dose steroids and will be for life. Dr after Dr has told me that my dose is too low to affect MG. Too low to affect results and too low to relieve symptoms of MG. What can you do ?
|
||
Reply With Quote |
07-20-2017, 12:28 AM | #5 | ||
|
|||
Grand Magnate
|
How low is low?
With many drugs, it is not the amount, but the consistent dosing that helps. Why would steroids be any different? Doctors often overdose patients on Pred. Their approach is "let's nip this in the bud." Well, we all have MG forever. Higher doses of steroids don't get rid of MG, and they can cause major problems such as secondary illnesses. Low dose naltrexone, for example, has been shown to help with other AIs. Someone I know from NZ uses that. If doctors don't study ALL of the info there is out there, how can they know with any certainty what they are claiming? And why would they disagree with the Mayo Clinic, that clearly states steroids can cause a false negative antibody result?! Does the low dose relieve your MG symptoms? There are objective tests that can show that, such as breathing tests. I can't stand when logic doesn't prevail over out-dated paradigms. Even science changes over time. For example, there is a guy who can predict earthquakes with 80%+ accuracy. The experts said that no one could ever do that. I hope your docs will maintain an open mind! And that this MuSK will be positive! Annie |
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
Acetylcholine Receptor Antibody | Myasthenia Gravis | |||
My Acetylcholine Receptor AB Panel | Myasthenia Gravis | |||
Most Positive Antibodies Results | Myasthenia Gravis | |||
Ganglionic Acetylcholine Receptor Antibody and "idiopathic" neuropathy | Peripheral Neuropathy | |||
Help understanding Lab Results | Peripheral Neuropathy |