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- - MG? (https://www.neurotalk.org/myasthenia-gravis/124878-mg.html)

Quote:

Originally Posted by AnnieB3 (Post 665541)

Hi, mhs, do you have a more informal name?

No one wants to be pointed towards any disease, they all suck to varying degrees. People do die of MG too, though not as a rule like with ALS. A friend of mine died of ALS, and I think we all understand how difficult it would be to have that disease. I doubt Debra meant any harm whatsoever.

When they diagnosed you with Bell's, did they do any testing? A brain MRI? Did they give you Prednisone for it? Studies have shown that a combination of Pred AND vitamin B12 do a better job of healing Bell's.

It's possible that you still have nerve damage. Yes, you could indeed have MG. Bell's has many causes and I have always found it interesting that an immunosuppressant can make it better. I have to wonder if the cause of it can be autoimmune. Sublingual B12 will help greatly since it goes to work right away in the bloodstream.

Do you mind me asking how old you are? I really hate when doctors treat for "reflux." Our stomachs age as we age. We lose stomach acid. And antacids/acid blockers reduce your ability to break down food and absorb nutrients like B12, calcium, iron and protein. Besides, there are a lot of causes of reflux, including celiac disease. And there are a LOT of causes of increased mucous, including undiagnosed food allergies, respiratory allergies, dehydration, etc. To me, it sounds like these doctors are not trying to figure out what is wrong but throwing drugs at your symptoms. Have you expressed that you are anxious about your symptoms? Yes, that is TOTALLY a normal thing to do!!! But doctors can sometimes jump from that to "it's all anxiety." Which is utterly absurd.

Mucous is normal. The consistency (thin to thick) or the frequency is what is not. Inflammatory foods like diary, beef and eggs can cause an increase in it. With bulbar symptoms of MG, you can have symptoms ranging from feeling like your tongue is thick to not being able to swallow well to mucous staying in the throat because of not being able to swallow well and all sorts of other symptoms. So while mucous alone is not an MG symptom, the inability to clear it or move it is.

Are you on an anxiety medication? Is it Paxil? Paxil has been known to cause twitches, either going up or down in dose. Check any drugs you are on for side effects. Look for twitching on the list. You have to be thorough with any new health problem and drugs do indeed cause problems.

What MG is all about is muscle weakness that gets worse upon activity and better with rest. When muscles get weak, they do indeed twitch or cramp or spasm. It is a "secondary" symptom of anyone with a neuromuscular disease like MG.

Do you have ptosis (drooping eyelids)? Have you looked at your face at the beginning of the day and then later in the day or after an activity? Do you have any shortness of breath? Any trouble with your arms while doing simple things like dishes? Any trouble walking up stairs? Does your neck get weak and it feels like it's hard to hold your head up? Those are some of the signs of MG.

This is not always the case but MG is a "head and down" disease while ALS is a "foot and up" one. Again, there are exceptions to every rule! Guillain-Barre usually starts in the lower extremities too.

You may want to see an ENT doctor to assess any swallowing issues. A neuro-ophthalmologist (not a regular optometrist) can assess any ptosis you may have. If you want to be assessed for MG, your internist can run the antibody tests: AChR antibody panel (binding, modulating and blocking antibodies) and the MuSK antibody test. They can come back negative and you can still have MG. You can see an MG expert neuro to assess you for it.

I hope that info helps. I know how scary it can be to not know what's going on with your body. Try to relax as much as you can. My psychologist told me that anger and panic attacks can not exist at the same time in the same body. So, if you can, try to get angry if you feel any panic coming on. Seriously, it works. I don't have an anxiety disorder but PTSD from medical traumas.

Hang in there. Write ALL of your symptoms down and keep a diary!! You may begin to notice a pattern. Good luck.

Annie

Thanks Annie. I am 31 (male)...which is young to any neuro disease really. I do not have any eye lid droop, and and really not having trouble swallowing per say. Everything goes down. I just can't shake the feeling of the lump in the throat. although I don't feel it in the morning. I also have a burning sensation behind my breat bone and have burped up acid once or twice a day. all classic signs of reflux. I don't have any limb weakness. I can cut our grass (which is on a hill), and lift my 40lb son and carry him up the steps. No problem. it would sem that I have benign fasciulation and GERD, and now of course anxiety. I am taking Altivan (which works GREAT!) I had the twitching well before the altivan. I can't say that any of the muscles feel tired when the twitch. it jsut kid of happens. I think if I can get the anxiety under control all else will get better. They do think that the prednisone I was on for the bells damaged my stomach that plus the stress (which is accurate) is causing GERD now. The twitching is anybody guess, but I have heard that it is like a mild version of Fibromayalgia (which my mom has. BFS is like Fibro without the pain.

Oh and my name is Don, and mucos is thin and barely noticeable. i am not coughing any out. it is jsut the sensation that it is there.

Thanks, Don. ;)

What Pred does is to reduce the gel coating of the stomach. To help repair that, you should probably take flax or fish oil every day. And acidophilus. Understanding what a drug does to your body really helps in being able to recover from it!

Ativan is a drug that can cause muscle weakness!!! People with MG should not take drugs that could increase muscle weakness.

Has anyone thought to check your chemistry panel? Things like potassium, sodium, calcium, etc.? Also, other things that can cause muscle twitching are binge drinking or drinking too much water alone. Why? It reduces the amount of sodium in the body and can cause hyponatremia (fancy name for too little sodium). It's not only how much a person drinks but how quickly that causes it. I've had it, it's not fun (not from binge drinking though). When electrolytes are off, they can wreak havoc on the muscles and heart.

Why doctors throw Ativan at patients all the time is beyond me. It's like they don't want "uppity" patients and want to get rid of them via a drug. Hate it. Not that anxiety shouldn't be addressed but it can also be helped by a psychologist. The coping skills they can give you are amazing!

You know what else causes a feeling of a lump in the throat? A thyroid condition!!! Has anyone checked that out?

I hope you will sit down with an internist, if you have one, and discuss all of this. Maybe they can be more thorough. Or get a 2nd opinion from another one if yours was the one throwing drugs at you.

Defining a condition or disease is the most important thing, before you have drugs. Yes, drugs are often necessary right away, like in Bell's but you really need to know what is causing symptoms. If doctors had given me Neurontin for my paresthesias and Provigil for my fatigue back in 1997-99, I would have had less pain and been more awake but I would've eventually been dead from my B12 deficiency. Which, by the way, they should test you for too since Pred reduces stomach acid and interferes with your ability to process foods and absorb that nutrient.

Best wishes,
Annie

Quote:

Originally Posted by AnnieB3 (Post 665603)

I do take a B12 supplment everyday. But I had not heard of the drinking too much water thing. IO have been drinking alot of water mainly becasue of my nervousness about swallowing. then I run to the bathroom about once an hour because I am drinking so much water. I do have hypothyroidism (diagnosed last year). and I takes meds for it. I just had a full run of that, and it is normal.

I do believe anxiety is a big part of this. i cut my grass last night and felt great afterwards....Nop burning in chest or lump in throat. Slept gret all night. I expelled the energy and felt good. I need to find a way to stop obsessing about my health.

Also get tested for Celiac Disease

If you have one auto-immune disease, you are more likely to have another one. There is an easy blood test for Celiac Disease, but many people who are gluten-sensitive will test negative for CD. It is possible that you might see some improvement - specifically with your GERD and your anxiety - on a Gluten-Free diet. I know that my arthritis went away, I felt better mentally, I had more energy, and I slept better within 24 hours of starting a GF diet. A LOT of people have their GERD get better on a GF diet, as well.

DON'T START A GF DIET BEFORE YOU GET TESTED!!!!! - it can alter the results of the test. Most doctors will be willing to do the test without you having to come in for a check-up.

While you are waiting to hear from your doctor, please go to www.celiac.com - there is a treasure trove of information on that website, and you will find lots of links to other sites as well. A GF diet is relatively easy to follow, once you figure it out (it usually takes about a month to work out the kinks), and more and more GF food is available both in grocery stores and in restaurants - many of them have a GF menu available right in the restaurant.

Also have your Vitamin D levels checked - most people have low levels these days, and a lot of health issues are being linked to low D levels. Celiac Disease is a disease of malabsorption - once a person is on a GF diet, their intestines start healing, and they start absorbing all of the nutrients they are eating.

I don't know about anyone else, but for me, it was almost like a miracle when I stopped eating gluten. It didn't seem possible that changing one simple thing in my diet could make that much of a difference, but it did. Best of all, I didn't have to take any special medications or buy any special supplements. It was the simplest "cure" (I have to stay on a GF diet for the rest of my life) that I ever heard of.....

(I don't mean to imply that a GF diet is a cure for MG - it helped with OTHER issues that I had. I do think that it has helped with some of my MG symptoms, though)

I just read your other responses - if you have hypothyroidism, your mom has Fibromyalgia, and your granddad had MG, EVERYONE on that side of the family should consider getting tested for Celiac Disease. Like I said, go to the celiac website listed above and start reading - many people are gluten sensitive, will never test positive for CD, but will DEFINITELY improve on a GF diet (my husband is one of those people). If you do test positive, you will want to either monitor your son for symptoms or just start him on a GF diet, too (trust me, it's easier to have the whole family go GF....). Celiac Disease/Gluten Sensitivity runs in families.

One more thing.....

Don't let your doctor blow you off about getting tested for Celiac Disease - it is MUCH more common than most doctors realize. It is currently estimated that 1-in-133 people have CD, but only 3% of them KNOW that they have it. The "typical" symptoms - failure to gain weight, diarrhea or constipation, and stomach upset - that doctors were taught in medical school only show up in 3% of CD patients.

It is believed that 3 million people in the US currently have CD, yet 2.9 million of them DON'T KNOW THAT THEY HAVE IT. The national Celiac organizations are doing what they can to make more people aware of this easily treated disease, but it's still rare that a doctor will connect the dots - hopefully that will change in the next few years.

Please get tested ASAP, and regardless of the results PLEASE do a trial GF diet for at least a month - I think you may be pleasantly surprised. I would keep watching for MG symptoms even after going GF to be on the safe side, but a GF diet will probably help with many of the other things that are going on right now. If it helps, be sure and stay on a GF diet FOR LIFE.

There is also an excellent book out there called "Celiac Disease: A Hidden Epidemic" by Dr. Peter H.R. Green, M.D., one of the leading Celiac researchers in this country. An updated version of this book was published earlier this year, but you may be able to find another version at your local library if you don't want to purchase a copy for yourself (it makes a GREAT gift for stubborn doctors :p....).