To Quix..Myasthenia Gravis?

[pietiangel]

I was wondering if you ever went through testing for the Myesthenia Gravis and if they ever thought you had it at any point? I have been through so much to try and get a diagnosis of some kind and still have not gotten anywhere. One of the neuro's that I saw suspected it, but also thought it could be MS. My acytecholine antibodies were normal, but the acytecholine binding was elevated. I started off with severe muscle weakness after my daughter was born in July of 04 and then the ptosis, dysphagia, asthma, and clumsiness, confusion, heat intolerance, tingling, and now a sharp pain up my left shin (everything happens on my left side. I am unfamiliar with Myesthenia Gravis, but I know everything about MS since my grandmother and aunt both have it. I had a slightly positive RF and positive titers for Anti-Myelin antibodies IgG and IgM (serum). I had another ANA ran and it was negative. My MRI's are all clear, but I still question it. I was wondering if you knew if Myesthenia Gravis can effect just one side, or if it can be worse on one side and not the other? I went on the auto-immune forum, but I cannot get any one to answer this question. I know you do not have MG,, but I know that you are great about helping others when it comes to medical knowledge. Thanks for your time Quix.
pietiangel

[Heather3418]

Hopefully Quix will be on shortly to see if she can sort this all out for you.  I am not knowledgeable enough to even begin to give you any suggestions.

Hang in there...I am sorry you have not been feeling well.  Hopefully we can get you some answers quickly.  Or at least opinions...

Heather

[Rena705]

Hi there my dear...I was SO EXCITED when I saw your post!  My name is Rena and I have been diagnosed with MS but apparently it is in remission...however, I have been experiencing symptoms somewhat similar to you and I was called by my dr. office on Christmas Eve to tell me that they received the results of the blood tests that were taken and they would like me to come in on Jan. 9th to discuss them.  One of those tests was for Myasthenia gravis!  Don't get me wrong, I don't want anyone to have this syndrome, including me, but it would be so nice to finally have a diagnosis so that maybe we could get on with it!

I was diagnosed in February of 2007 with Paratrigeminal Neuralgia which causes severe pain in one side of the head and ptosis on the opposite eye.  However, the ptosis has never really gone away except when I was treated with Solumedrol and Predinisone. I have also been suffering from confusion,  severe vertical double vision, neuropathic pain in my feet, muscle spasms in my legs, inability to express myself vocally (sounding like someone inebriated), difficulty with finishing sentences (just can't seem to find the words), heat intolerance, swallowing difficulty, breathing difficulty and my eyesight has deteriorated noticeably although my eyes have not changed according to two visits to my Opthamologist (he says that changing my glasses would be of no help).

I am very anxious to hear what my dr. has to say next Wednesday and I will be sure to let you know what happens.  I have not however noticed that my symptoms are more pronounced on one side than the other except that I only have the ptosis on the left eye.  I am so sorry that I can't be of any help to you but I hope that Quix will have some more information for you and like I said, I will let you know what happens when I get my results ok?  Best of Luck to you and I hope you get some answers soon...I can relate to the struggle that you are going through in trying to get a diagnosis and I sympathize!

Lots of Hugs,

Rena705

[Quixotic1]

Hi, I'm only going to be able to help you a little, I'm afraid.  My knowledge about MG is limited.  But, I am fairly confident that MG is a "systemic and equal-opportunity" disorder.  Because the antibodies to the neurotransmitter receptors flow through the blood and are present at ALL the neuromuscular junctions, there would be no mechanism that I can imagine to cause symptoms (fatiguebility and weakness of muscles) to be only on one side.  The body should be affected globally and bilaterally.  I do know that in the beginning some muscle groups are affected more than others, but it has always been my impression that the effect was still bilateral.

I hope this is a little help.  Quix

[Heather3418]

Info for those on the forum who may not know what Muasthenia Gravis is:

Myasthenia Gravis (MG) is a disease in which weakness occurs when the nerve impulse responsible for initiating movement fails to reach the muscle cells. Individuals with MG have an increased risk of developing other autoimmune diseases.

MG symptoms tend to fluctuate throughout the day, often worsening at night. Droopy eyelids, facial weakness, impaired eye coordination, weakness of the limbs, neck, shoulders, hips and trunk muscles are all typical. Muscle fatigue is common, and heat, overexertion, or increased stress can aggravate this symptom. MG can occur at any age, although young women and older men are the most commonly affected. Those with MG experience no loss or change in sensation and they don't normally experience generalized fatigue. Instead, they experience localized fatigue in overtired muscles.

Info from MSfacts (dot) org

[pietiangel]

Thanks for all of the input guys! I do have weakness in all of my muscles, it just seems worse on my left side than right. I have such a hard time even opening my son's bottles to put formula in them, I can not brush my hair for longer than a few seconds because my muscles start burning and I feel like I can not go on and I have to drop my arm. I too get a sharp pain in my temple area that comes on for a few seconds and then goes away. It seems like a jolt of lightning in the temple and sometimes it shoots down my neck. I definitely feel fatigued all over though. Maybe it is because all of my muscles are over exerted from carrying a 3 yr old and a 10 mo old all of the time. I just had to get new glasses because I cannot see very well anymore, but I have always had to wear glasses. I have been to the hospital once and an ENT doctor for dysphagia, I could have sworn I was choking. They told me that my muscles are having some sort of spasms and weakness in my throat. I feel like I have to clear my throat all of the time. The ptosis does not seem so noticeable to others now, but it is still there and I can tell. I also have bad twitching in it. Rena, i would love you to write me back and let me know how things go for you at the doctor. Thanks everyone!

Pietiangel

[essdipity]

Hi, Angel. I'm no competent judge, but you sure are sounding MS-y to me. When are your new neuro appointments?

ess

[pietiangel]

My new appointment is on Feb 4th. I have been waiting for awhile for it since she has been on maternity leave. I have had 3 doctors say possible MS, but no Lesions, no diagnosis. Feb 4th cannot not come soon enough and I am feeling awful right now. I have walked into things quite a bit the last few days and have been very spacey. I am hoping this new neuro tells me something instead of brushing me off. I am so worn out trying to get my family and friends to understand where I am coming from and they joke around and say" oh quit being a wimp" or act like nothing is wrong. I know that this is normal, because my grandmother and aunt went through it. I really appreciate all of you responding to my post, it is very sweet. I still appreciate anymore input you guys have and please feel free to talk to me about anything too or ask questions.

Thanks,
Pietiangel

[essdipity]

It's heartbreaking when those we care about--our family and friends--act as if we're intentionally acting sick and looking for sympathy. I have been through that myself, in spades. Just trying to keep on with life is enough, without feeling isolated and ostracized. It's really hard to tell yourself that they just don't understand and don't mean anything by their behavior, I know. You are the one facing the awful symptoms, yet you also are supposed to transcend everything and instead reach out to them. At least you do have the validation of your aunt and grandmother. Are they still living, and can you connect with them while you go through this?

Meanwhile you do have this forum. Say whatever you think, let loose with whatever you are feeling. We do understand. I know you've read all the suggestions about lining up your ducks for your next neuro appointment--records, timeline and so on. And I'm also hoping that the new FAQ section of this forum will be in place soon, so you can use it as a checklist while you prepare.

I'll say a prayer for you tonight.

ess

[pietiangel]

Thanks much ess for all of the kind opinions. My family with the MS is still living, one lives in FL and the other in Alaska. I get to speak to them occasionally. I will def get together a checklist and hope for the best at the new neuro. I also have gotten back my test results I had done a few weeks back here at work. It is called a NeutrEval test. It checks all of your acids and chemicals in your body. Almost everything in my body is out of whack. I checked on the results and the doctor here told me that people with MS seem to have deficiencies in their amino acids, fatty acids, and oxidative stress. I had no idea that these things could cause problems like they do. We have a website for here at work that explains these tests to you. It is www.gdx.net. You just click on tests and then by condition and click on Multiple sclerosis. We specialize in tests for MS and all kinds of other stuff. You should check it out, I never knew that there were studies on MS and the essential acids and chemicals in your body. We do labs for study centers quite often and it is interesting to see the results. Well, have to run for now. Thanks much ess for all of your time!
Pietiangel