My husband has MG, Celiac, Autonomic neuropathy small fiber, peripheral neuropathy, degenerative disk dis., spinal stenosis, spondylosis, hypertension, low vitamin levels, amino acids, and testerone and sleep apnea.

In march he was taken by ambulance in mild respiratory distress and spent 5 days in hosp, this was prior to diagnosis of MG and is now thought 2 be a crisis as his mg went undiagnosed for yrs in fact its consider advanced generalized mg.

Well he has been upset due to having his disability insurance filming him doing a few hours of light activity, and then no activity for 2 days they are saying he can work when truth be told he had just had several days of IV steriods prior 2 the video and spends 80 percent or more of normal days in bed or resting due to pain and muscle cramps/fatigue. Well after
stressing over this he has been in bed since Saturday and I know he has been using his inhalers and having off and on wheezing, he also feels like he is swallowing his tongue, his ears are ringing, his bladder isnt responded well and when when it does smell of sulfure, and his voice is raspy..he is in tears from the pain level being so high. He is wobbling when walking due to balance and even lost all vision a few moments last night. We have a prescription for IVIG but are waiting 2 see the oncologists next week, a new dr. The doctor who prescribed is in cleveland and we r in georgia. I am scared something is wrong, he even is startingt to sound nasal congested

I think the most important thing to do is for him to try to relax. Stress makes MG so much worse.

Well, really, the most important thing is to probably go back in to the doctor or the ER. Having trouble swallowing or breathing is the reason to go back in. Or generalized weakness. Steroids can also make someone temporarily get worse. And since he is immune suppressed, he can get sick more easily. He should make sure that cough isn't bronchitis or pneumonia!!! Especially after just being in a hospital setting.

IVIG is what he obviously needs and if he has orders, he can go in and get it done. Don't put his health on hold because of bureaucracy. IVIG does not have to wait. Why is he seeing an oncologist?

Don't sweat the social security people. Is he in the beginning process of applying? What stage is he in? They often will want to deny people social security, even if they are truly disabled, for the first two tries - until it goes before a judge. What can you do? Easy. Document everything your husband does, with writing, photos and videos. Get a good neurologists and any other doctors who will write a letter saying he is disabled. MG is a disabling disease and the hallmark of it is fatigability, meaning he can do some things at some times (like in the morning or after drugs or after resting) but not others (late in the day, drugs have worn off, has done too much). They can't videotape you 24/7 - that's illegal. But you can.

Social security disability is not based on being able to do something a couple hours a week!!! They want you to think that. It's based on NOT being able to work more than a certain percentage of a week, day in and day out for an extended period of MONTHS. A good lawyer knows that and he may need one if he gets to the "third" phase of soc. sec. application.

It sounds like he went a long time undiagnosed with celiac and it did damage. I hope he is doing lots of supplementing with vitamins. He and his immune system need pampering right now.

The sulfur smell is "probably" because he is not digesting and absorbing protein well. I think his doctor should be told of this and they may be able to reassure him. Is he gluten free now? If not, he can get worse.

Is he able to stay hydrated? Can he swallow food? If not, those are other reasons to go in.

Can I talk straight? He sounds like he is in bad shape and needs more care. And not in a few days but right now. I'm not a doctor and only a doctor can adequately evaluate his situation. Like getting a chest x-ray.

I hope you can get him healed. I, again, highly recommend higher doses of sublingual methylcobalamin a few times a day. Like 5 - 10 mg. three to four times a day. He needs B12 to heal his nerves and cells. Shots aren't going to do enough. The Jarrow brand from iherb is what I really like.

I'm sorry you are both going through this. Please understand that healing is going to take a while. And MG takes longer to get better after a breathing crisis, so he has to stay out of that southern heat and humidity, stay cool and rest as much as possible.

I hope he will get better soon. Just go in, because it's better to err on the side of caution.

Annie

Ditto to what Annie said about being on a Gluten-Free Diet. Even if he feels better, it is ESSENTIAL that he remain on a totally GF diet for the rest of his life. Researchers don't know what level of gluten will cause a problem in people with CD, and they don't know how long it takes for the intestinal lining to get back to normal after a "glutening".

If your husband doesn't follow a GF diet, his intestines will not be able to absorb everything that he takes in - that includes not only nutrients, but also medications. It can take up to 2 years for the intestinal lining to get back to full capacity.

Our youngest daughter's bloodwork numbers were back to an acceptable level after a year on a GF diet - she had numbers that were literally off the chart, and NO discernible symptoms prior to her diagnosis.

The "nasal congestion" that you are hearing is probably due to the MG - it is not uncommon to notice a nasal/flat sound in the speech pattern of a person with MG. Be sure and mention this to your husband's neurologist, because he/she will definitely want to know about it!

I hope that you are able to get things resolved with SSI - it seems to me that a sternly-worded, well-documented letter from your husband's doctor(s) should be enough to convince them of his inability to work.

I also hope that he is able to get all of the medical issues resolved soon - it's no fun to not be able to feel as good as possible. You be sure and take care of yourself, too - you won't be any help to your husband if you aren't at the top of your game.....

thanks, we where on the phone all day 2day with doctors they said ER but he wont go because last time ER doc looked at me and ask what tests should he run. They did get his oncologist apt moved to in am at 8, he is seeing him 2 oversee IVIG and because they think he has blood immune disease due to low testerone, vit d, amino acids, and varying levels of ammonia, calcium, uric acid and chloride. As I typed this he got choked on his on spit and it lasted a few minutes, he couldnt breath-I dont know what to do besides pray as he is stubborn. Thanks for the ss info, the one recording him is his insurance he paid throughy work for 23 yrs....



QUOTE=teresakoch;675010]Ditto to what Annie said about being on a Gluten-Free Diet. Even if he feels better, it is ESSENTIAL that he remain on a totally GF diet for the rest of his life. Researchers don't know what level of gluten will cause a problem in people with CD, and they don't know how long it takes for the intestinal lining to get back to normal after a "glutening".

If your husband doesn't follow a GF diet, his intestines will not be able to absorb everything that he takes in - that includes not only nutrients, but also medications. It can take up to 2 years for the intestinal lining to get back to full capacity.

Our youngest daughter's bloodwork numbers were back to an acceptable level after a year on a GF diet - she had numbers that were literally off the chart, and NO discernible symptoms prior to her diagnosis.

The "nasal congestion" that you are hearing is probably due to the MG - it is not uncommon to notice a nasal/flat sound in the speech pattern of a person with MG. Be sure and mention this to your husband's neurologist, because he/she will definitely want to know about it!

I hope that you are able to get things resolved with SSI - it seems to me that a sternly-worded, well-documented letter from your husband's doctor(s) should be enough to convince them of his inability to work.

I also hope that he is able to get all of the medical issues resolved soon - it's no fun to not be able to feel as good as possible. You be sure and take care of yourself, too - you won't be any help to your husband if you aren't at the top of your game.....[/QUOTE]

I would almost bet that all of those deficiencies are related to celiac disease. With celiac, the small intestines, where we absorb the majority of our nutrients, gets so damaged that little to nothing is absorbed. Patients who have had CD for a long time are nutritionally malnourished!

I'm sorry your husband is stubborn. I think you'd rather he be not stubborn and alive than stubborn and dead!! It's hard to come in contact with doctors who couldn't buy a clue but there are lots of them out there who will help!

To me, it sounds like he belongs in the ER. Not being able to breathe is pretty serious, even if it only lasts a "short time." All MG experts will tell you that this is the time to go in and those are the reasons to do it (inability to swallow and breathe).

He needs to be patient about the CD damage because that can take a while to heal. Maybe a nutritionist would be a good idea because they could have liquid protein drinks thick enough to swallow with lots of nutrients. Liquids sometimes absorb better in someone with CD and the body doesn't have to work as hard digesting food chunks.

I hope you guys will get the help you need.

Annie

tnalawson, is your husband CURRENTLY on a GF diet? If not, PLEASE start him on it TODAY!!! Once a person is diagnosed with CD, they MUST continue to follow a GF diet for the rest of their life. Some doctors still don't understand that concept, and some patients think that once they start feeling better, they can start eating food with gluten in it again.

The damage that is caused by just one grain of gluten in the system of a person with CD cannot be overstated. If a person's intestinal tract is compromised, they WILL NOT get all of the vitamins/minerals that are so essential to keeping their body running, and their body WILL pull those nutrients from wherever it can find it. That can lead to some very nasty health issues - some of which can be reversed, but just as many that can't!

If this is stuff that you already know, please excuse my interference; it's just that my daughter and I were diagnosed with CD 2 years ago, and I have done a lot of research on the subject (my daughter has Down syndrome, so I have to be the knowledgeable one.....). Sometimes people already know this information, but I'd rather err on the side of caution!

As far as the insurance stuff, have his doctor send the same strongly-worded note to them; I am sure that they have to make sure that he isn't faking it - they probably have had any number of people in the past who fraudulently claimed to be unable to work longterm when there was nothing preventing them from returning to work after they healed. Obviously, that isn't the case with your husband, but the insurance company has to verify that.

Since he has a definite diagnosis, perhaps you could speed things along by sending them a copy of his test results, along with a copy of information (preferably from an MG organization) about what MG is and how it can affect people. It certainly can't hurt.....