My daughter has been sick since the end of June. She started out with flu-like symptoms and then sore throat that would come and go. This progressed to having problems swallowing, eating (she has lost from 105 to 89lbs), talking. She has knots on her neck and swollen tonsils that come and go. Along with this she has fatigue, gets tired just taking a shower, her eyes look droopy at times and she complains that she can't type, grip or even smile.
We have been going to dr.s since the end of July when we realized this wasn't going away. The dr.s have done every test they can think of including ctscans for tumors. Every test comes back negative and no medication has helped with the swollen glands. She is on her second round of antibiotics and also took prednisone. The dr. has basically dismisssed us and referred us to a psychiatrist. They really believe that this is all caused by stress and anxiety from moving to another state. We had to take her out of school and i'm now homeschooling. We are going to take her to the psych. as soon as we can get in, if she didn't have anxiety before she sure has it now!
I was thinking we might need to try a neurologist since she is having so many problems with her muscles. Would this be the right specialist to go to next? There has to be a dr. who knows what is causing this. I can't stand to see her have to go through day after day of this illness without any relief.
Yes take her to a neurologist for sure. Don't let them dismiss this as her bringing into herself. They do this often when they can not figure it out. They say its all in your head see a shrink.Good luck and do not give up keep trying docs till you find the answere..Could it be CFS
Anythings possible at this point. They tested for all the usual, mono, lyme, diebetes etc. My sister suggested i look into CFS yesterday. Do you really have to have that for at least 6mths before they will diagnose? If they don't figure out something soon we are going to end up going for iv's every week!
I feel so sorry for my poor daughter. We just moved about 2mths ago and she is missing her friends now and can't even talk on the phone.
Thank you, i will keep doing research on cfs and try to get her into a neuro.
yes, that sounds like what she is going through. now i'm even more scared! we have an appt. at a children's center on monday.
Thank you for the suggestion. now i know what to expect as far as tests etc.
The dr. thinks it could be MG. She goes for a brain mri on Friday to rule out other things. Then we have a neuro appt. on the 10th.
How do you deal with the symptoms? It's so hard watching her try to talk or eat. I could just cry all day, but of course i don't unless i'm sure she's nowhere near (like in the shower!) The poor child can't sleep because she is afraid of choking on her saliva
Oh dear, it DOES sound like she has MG. First off, let me say how SORRY I am to hear about it. It can be a terrible disease. However, it isn't ALWAYS terrible and can be made better or even go away for periods of time with the proper treatment and a little good luck.
I'll tell you about myself. I'm a 44 yo who has had MG since 9/26/98. I woke up that morning and out of the blue, couldn't swallow cheerios. Soon double vision followed, along with speech problems, chewing problems, neck weakness and to a lesser degree, limb weakness. I finally was diagnosed in 99 following several attempts at finding a neuro and working around my own denial of my symptoms (I'm a healthcare professional so knew what was wrong but I was also human and dealt with it likewise.)
I am seronegative, MusK negative, meaning I don't have antibodies in my blood. I've had a thymectomy (did the minimally invasive one) without success (it's not very effective in seroneg folks). I've tried Mestinon, the first line symptom controlling drug, without success as I'm allergic to it. I have used Prednisone (works like a charm but not without a cost to my body), IVIG (marginally effective but helps keep me otherwise healthy from colds/infections), and Cellcept (also marginally effective but with costs to my body).
I have not had really good symptom control. After a really bad first few years (which is typical of MG) I suddenly and without warning went into a drug dependent remission. I was symptom free for 2.5 glorious years. I even went off all my meds for a while with no problems! It was wonderful. However, 3 years ago, it all came crashing down and I've been struggling to find a manageable level of function since.
I no longer work much in my profession as I can't speak, see to drive well, etc. I now work from home and own my own internet business. I use my past knowledge from my job to help manage my symptoms. I use my blender to make smoothies, creamed soups, etc to help me get some nutrition into me. I prop up the head of my bed when I have swallowing problems at night. I simply don't talk much when I'm bad as it sounds so bad, people think I must be drunk, drugged or head injured (it's REALLY bad, in my case.) I cover one eye at home so I can function with the double vision. I've learned to adapt and enjoy the good times when they come. I'm currently on my second week of relative symptom free time and I am busy talking on the phone, eating all sorts of foods, etc.
Another thing I've noticed is that my symptoms get MUCH MUCH WORSE when I have hormonal shifts such as at ovulation time and start of menses. This is common with females with MG. If your dd has this, you may consider using some oral contraceptives as that does seem to help some women (but not me, of course! Sigh)
Your daughter will likely not have as hard of a time as I have. I'm a difficult to manage patient, and I'm one of the more rare ones. Mestinon will likely make a large difference to her as it will help control the symptoms for several hours at a time, and will make her more functional, able to sleep safely, etc. Once she's diagnosed, you will be given treatment options. Do your research and feel free to ask me anything. If you're not happy with your doctor, find a new one (it took me 4 tries to find the one I like.) I go to a university run neuromuscular clinic so I'm in on the cutting edge of research. The dept is big and somewhat impersonal, and I like it that way. Others are more comfortable in an intimate setting where there are more "warm and fuzzy" personal touches. You do what you and your daughter need.
And yes, go ahead and cry. Be there for your daughter. MG is something that affects the whole family, friends, etc. I found my friends scattered like roaches when the light is flipped on but I now know who my TRUE friends are, and I've made others in the last few years who know about and accept my problems.
Enjoy the good times! Since having MG I've been to Disney World and did everything, including the worlds tallest waterslide, been to Cancun and swam in the surf, hiked mountains in Colorado and have planned a trip to NYC in November. I choose to live my life despite the MG and with some careful planning, it usually works out well.
I hope I haven't scared you, and I want to stress again that I'm an unusually difficult case. 90% of folks have a much easier time of it than I have had. That being said, if your dd suddenly has trouble even managing her saliva during the day, or cannot eat food or drink for 24 hours, go to an ER. That is serious and she needs to have support nearby. Tell them she is currently in diagnostic process for MG.
Thank you so much for sharing I'm sorry that it's been so difficult for you, you are in my prayers.
My daughter actually had a pretty good day today. She was out of bed several times today and even had a little skip in her step! She was also able to eat alot compared to usual days. I was really happy to see a little twinkle in her eyes,,,she is also bipolar and has been very depressed.
I've been doing lots of research on different drugs and also supplements etc. My cousin and her two daughters have had these same symptoms for over 4 yrs now. She was not tested for MG and even went to the top specialists in the country. She did visit an immunologist who put her on special diets to improve her GI system etc. After making changes to her diet, adding supplements, getting a water treatment system and some other things like that they are all able to function. her daughter was actually unable to go to school for 4yrs. until she made these changes. Most of them seem to go along with other things i've been reading online about MG. Have you tried any vitamins etc. that have helped your condition? The only thing she's been taking regularly is L Glutamine and i was wondering if it is part of the reason she is feeling a little better. I'm going to keep reading everything i can! Look for posts with your name on it Thanks again!
Yes, I've tried all sorts of dietary/alternative medicine regimes. Acupuncture, chelation, vitamins, cranial sacral, hormone manipulation, diet etc. Nothing has helped.
Luckily I've had the resources to try pretty much anything I've wanted. My dd is also autistic and we've had marvelous success with using biomedical interventions as she's now simply ADHD with a few other "issues" so I know the value of biomedical treatments.
It's not unusual to have spontaneous improvements in MG. I had enough of them during my early days to keep me heavily in denial. However, once I got to that drug free remission stage, I realized how bad I felt even on one of those other "good days." It's frightening how quickly MG can take away your life. Since writing the other day I'm weak again (hormonal shift) so here I sit, waiting for a few good days again. That being said, the chance of spontaneous remission are highest during the first 2 years of symptoms. I actually know a woman who has been in total remission for over 20 years!
I'll let you go now. Please keep me posted on your dd. When is her MRI?
I hope you are feeling better today. This sure is a horrible illness!!
The MRI came back...everything normal. Now we are waiting to see the neuro on the 10th. i figure we will be at the er before then. she had two really good days where she could eat almost normal and even walk around some. now she is having shortness of breath and not able to to do anything but drink her "food", that is difficult too.
Please be very careful about the SOB and swallowing difficulties. Bad swallowing problems can be the precursors to respiratory distress/failure. Also, at the ER, they may do a pulse oximeter reading and it can look absolutely fine, yet the patient can be near respiratory failure. I've always had good luck at the ER, but that's because I worked at that hospital and everyone knew me. However, I've heard others report that it doesn't always go so well.
I'll be thinking of you and thank you for the well wishes for me as well. I'm hanging in!
We got the official diagnosis today. We are at the children's hospital getting her meds figured out. after the first 1/2 dose she was able to talk clearly. the second dose she was talking to all her friends for 2hrs...she hasn't talked to them in over three months. it's been good to see her smile after sooo long! We took her to the er over the weekend and waiting over 6hrs and did not get "seen". she was so tired from sitting there and they kept getting car wrecks etc. so we just had to leave. thank goodness we got a really good dr. today!
We are at the hospital for the second time in a week. The med. was not working as well and she was once again unable to swallow,,only worse! She is in the picu on a ventilator and feeding tube. They are talking about removing her thymus. What was the type of surgery you had,,,although i'm not sure we will have much choice?