[tnalawson]

My husband who is 44 hasn't worked since Aug. Chronic Pain, weakness,hypertension, blind spells/floaters, ringing of ears, loss of balance/falls, pins n needles. He has been diagnosed with spinal stenosis, spinal spondhylosis, vit. d deficiency, testorone low. He started having trouble with his bladder emptying and sulfur smell repetitive, bones changes and hypoammonia spells. In Dec. He had a spinal stimulator installed, in March he was rushed to hospital for low oxygen and bp, pulse got to 32, resp was low.They couldnt figure it out..thanks 2 prednisone, fluids, anti and a ton of other meds he improved in 5 days. Off to Cleveland Clinic after 5 yrs of progtression and 1 yr rapid detoriation. Diagnosed with MG, Autonomic Small Fiber Neuropathy, Celiac Disease<BLood pos> and all his amino acids low and eosin high

Tomorrow we go for an endoscope for celiac and lymphoma. They said celiac could interfere with IVIG so they arent giving him anything for mg now.
is this right???

Roxicodone-15 4x dahy
xanaflex 4x d
flurosimide 2 x da
coreg 80 mg
mccardis 80 mg
narvasc 80 mg
lidoderm patches
fetanyal 25mg
gabapentin 600 mg x 4
lunesta
wellabutrin
vitamin d
pottasium
vit e

[madnurse]

Hi Tnalawson,

I know so very little about MG, so I am sorry that I can not help you out there. After reading what you and your husband are going through, I just wanted to send a note to say good luck with your appointment tomorrow. You both will be in my prayers.

[teresakoch]

It's possible that your husband will feel MUCH better on a gluten-free diet. If a person has Celiac Disease (or just a gluten sensitivity) they are at a higher risk of developing another auto-immune disease. It is possible that his MG will get better on a GF diet as well. Please know that if your husband has CD, he will have to follow a GF diet FOR LIFE - and there is no such thing as "gluten lite". He CANNOT intentionally eat ANY gluten ever again (there will be accidental "glutenings" - it happens to everyone on a GF diet.....).

If you haven't already, I urge you to visit www.celiac.com - that website is a treasure trove of information on CD. You may also want to see if you have a GIG (Gluten Intolerance Group) in your area. It has become much easier to find GF foods not only in the grocery store, but also at many national restaurants.

Celiac Disease is a genetically-linked disease, so if you have children, you will need to have them screened for CD ASAP. Your husband will also need to let his parents and siblings know that they need to be screened as well. Unfortunately, you can't MAKE them get tested or convince them that they need to follow a GF diet, but at least you will have given them some medical information that their doctor will WANT to know!

Depending on how severe your husband's intestines have been affected, it may take 1-2 years for them to completely heal on a GF diet. Our daughter's bloodwork numbers were back to normal levels after a year (her pre-GF numbers were off the charts). Celiac Disease is a disease of malabsorption, so it isn't surprising that your husband has other vitamin/mineral deficiencies as well.

If you have any questions about CD, please feel free to contact me - our youngest daughter was diagnosed with CD in April 2008, and I was found to have it as well. I just got diagnosed with MG, but it appears to be a very mild case (so far) - I think that my being on a GF diet for the past two years has been very beneficial.

[AnnieB3]

I hope your husband came through the endoscopy okay. Since he has MG, he may need to sip on cool water after the endoscopy because it can make the throat muscles weaker. He should be careful of how and what he eats so as not to choke.

Celiac is probably to blame for most of the other symptoms and test results. If his celiac went undiagnosed for a while, he was not absorbing nutrients for long enough to be deficient in lots of things, including amino acids and albumin (which I bet is low). A B12 deficiency causes a small fiber neuropathy. He would need to take sublingual (under the tongue) B12 for months if not forever. He can't get it from his foods right now and B12 is essential for all cells in the body. It will also help heal the neuropathy. The sooner he takes it the better. I had a severe B12 def. back in 1997-99 and only the sublingual B12 helped, not the shots. The liver has to convert the cyanocobalmin in shots to methylcobalamin before the body can use it.

Have your doctors talked about liquid supplements? They may absorb better than pills. Having protein shakes will help; they are packed with amino acids. When I could have dairy, I liked Whey Factors protein mix (double chocolate). I got it from www.iherb.com because they have reduced pricing on all supplements. Some people really like the Jarrow sublingual B12. I like Source Naturals too. 5 mg. twice a day or more of it would be good.

Gabapentin/Neurontin has been known to cause MG and make it worse. Did your doctors know that? I realize that he is probably in pain but there are other things less harmful that can help. The lidocaine patches can help but they can make MG worse too!!! Putting socks on the feet and gloves on the hands can really help too. Not having foods that have either added or naturally occurring MSG will help (tomatoes, cheese, legumes).

Celiac would NOT interfere with IVIG. First, Celiac is IgA antibodies. MG is IgG antibodies, that's why IVIG helps. And they give it to him in an IV, not orally. It would go to work in the bloodstream, not the GI tract. It would be excreted via the GI tract but that doesn't interfere with bloodstream absorption. I have to wonder what their reasoning was.

Eosinophil being high could be from lots of things, including an undiagnosed allergy.

I think you need to have an internist and MG expert re-evaluate the drugs he is on. Some of them could be causing the MG to be worse, as I've said, and they might not even be absorbed!!!! If he can't absorb nutrients from food, he is probably not absorbing the drugs. Liquids or gels or anything else would be better. And drugs can become toxic under these conditions. Have they checked his liver function?

Since he has MG and celiac, watch out for signs of a thyroid problem. Either Graves or hypothyroidism.

Why is he taking Lunesta? Is it because he has trouble sleeping due to the pain? I think your husband is in the midst of a potential drug cocktail interaction. Seriously, doctors often throw these prescription drugs at problems without even thinking what harm they might be doing. Yes, he may need some but all of them? Acetaminophen may interact with a drug he is taking but sometimes a regular dose of that is enough (plus the lidocaine patch) for paresthesia pain. Mine was so bad I wanted to rip my feet off.

I hope your husband is okay. These guys here are great. If you need any more info on MG or Celiac (the forum here is great for that!), please ask anything. MG is a tough learning curve but so is celiac. There are a lot of good resources out there now for food options. Teresa gave you some good info. Celiac is like a B12 deficiency, how long it takes to recover is about how long you've had it.

Take care.

Annie

[teresakoch]

One thing that your hubby may find is that he will sleep MUCH better once he is on a GF diet - I know that I certainly did, and I saw the effects of it almost immediately. Also, he may find that he doesn't need to take as much of the Wellbutrin after a while, either. It is amazing how much better a person's body can feel once their body starts absorbing ALL of the nutrients that they are taking in!

About kids - our youngest daughter has Down syndrome, and they have a 1-in-8 chance of developing CD in their lifetime. If you look at the laundry list of complications that are seen in people with untreated Celiac Disease and the health issues that people with DS have, they are virtually identical. Our daughter was 6 when she was diagnosed (with NO symptoms, I might add - she has a WONDERFUL pediatrician who happens to have a stepdaughter with DS and CD). She had a pot belly, which we were told was due to low muscle tone - very common in DS kids, but also something that is seen in people with undiagnosed CD. Her legs were also starting to bow, which we realized later was due to osteopenia (soft bones) - a symptom of untreated CD.

She started growing taller after she was on a GF diet - short stature is another symptom of untreated CD, and many people with DS are VERY short. I'm also quite short, and after I was diagnosed with CD, I realized that I have probably had it most of my life, but I never had the "typical" symptoms of CD. Of course, now they are finding that only 3% of people with CD have those "typical" symptoms....

After starting on a GF diet, her pot belly went away, her muscle tone improved greatly, and her bones straightened out. Interestingly enough, in Belgium during WWII, many children were showing signs of rickets (pot belly, bowed legs). There was a bread shortage, and most of them actually got "better", since they weren't being exposed to gluten.

Anyway, that is why it is SO important to be sure that if you have kids you have them screened for CD. Many of these problems can be corrected/avoided if it is caught early. Unfortunately, there are some things that can't be reversed, so you want to prevent them if it is at all possible.

You certainly won't HURT them if you just go ahead and turn your kitchen into a GF zone - and it makes it MUCH easier for the whole family if they aren't always having to worry about which foods/pots & pans/utensils/etc. are "safe" (and this is coming from someone whose home-for-the-summer, non-GF kids are driving her absolutely BATTY with the food that they bring in from outside of the house......).

Happily, Betty Crocker has several GF mixes available now, most Chex cereals are now GF (except, obviously, their wheat version!), and General Mills has plans to roll out a GF Bisquick mix later this summer. Many grocery stores will order GF foods for you, and you can deduct the additional cost of GF foods on your yearly income taxes as a medical expense with a Celiac diagnosis (if you itemize your deductions and you exceed the percentage - which we never do....).

[tnalawson]

It came out he had signs of celiac(nothing bad), HY-Pylori, and inflammation on endoscope. We got his prescription for IVIG for 5 days in medical facility for 6 months.
Well our disability filmed my husband being semi active- he isnt suppose to drive and did(Being stubborn but he is on roxicodone and fentanyl has spinal stimulator) He drove 1 mile- went 2 walmart w/ me, filled up gas cans by bending, then we ate and he mowed grass on riding mower with mask for 15 mins. So less than 2 hours and u could see his lidoderm patches. He had just came off of a weeks worth of IV steriods and anti;s so he was stronger than normal. They wanna take his disability away. Great. Normally he is in bed a min. of 4 days week, now how I am suppse 2 do IVIG?

Originally Posted by tnalawson

My husband who is 44 hasn't worked since Aug. Chronic Pain, weakness,hypertension, blind spells/floaters, ringing of ears, loss of balance/falls, pins n needles. He has been diagnosed with spinal stenosis, spinal spondhylosis, vit. d deficiency, testorone low. He started having trouble with his bladder emptying and sulfur smell repetitive, bones changes and hypoammonia spells. In Dec. He had a spinal stimulator installed, in March he was rushed to hospital for low oxygen and bp, pulse got to 32, resp was low.They couldnt figure it out..thanks 2 prednisone, fluids, anti and a ton of other meds he improved in 5 days. Off to Cleveland Clinic after 5 yrs of progtression and 1 yr rapid detoriation. Diagnosed with MG, Autonomic Small Fiber Neuropathy, Celiac Disease<BLood pos> and all his amino acids low and eosin high

Tomorrow we go for an endoscope for celiac and lymphoma. They said celiac could interfere with IVIG so they arent giving him anything for mg now.
is this right???

Roxicodone-15 4x dahy
xanaflex 4x d
flurosimide 2 x da
coreg 80 mg
mccardis 80 mg
narvasc 80 mg
lidoderm patches
fetanyal 25mg
gabapentin 600 mg x 4
lunesta
wellabutrin
vitamin d
pottasium
vit e

Originally Posted by madnurse

Hi Tnalawson,

I know so very little about MG, so I am sorry that I can not help you out there. After reading what you and your husband are going through, I just wanted to send a note to say good luck with your appointment tomorrow. You both will be in my prayers.