It's been almost a year now since my sister was diagnosed with MG. She nearly died with a staff infection which caused her muscles to stop working her lungs and she had to be put on a ventilator for nearly 2 weeks. Finally she got rid of the staff infection and things were looking up. Then she got a kidney infection and went to the hospital ER. While in the ER she fell and broke her hip. She had to have a partial hip replacement. Now the Dr.s are saying her bones have become "soft" from the medications she is having to take for the MG. Has anyone here heard of anything like this? I am trying so very hard to stay positive for her and she is so frightened. Any information would be greatly appreciated!!

One last question...does it ever get better or is this just the way her life will be from now on??

Hi, how old is your sister, and how long has she been on her meds? Prednisone can cause thinning of the bones. Is she taking it, and how much? Orwhat meds is she on.
She may need a more aggressive treatment, and she may also need to see a neuromuscular specialist who specializes in MG. Sorry to say,Not all neuros are equal..smiles.
My first neuro was really nice, but she really new very little, I now see a neuromuscular specialist through the MDA, and what a difference.
It will get better, but it does take a lot of time to work it all out.
Does she have other medical problems other than MG?
So many things play in this. But the meds, prednisone can cause the thinning of the bones.
My first year was horrible too. It's a terrible roller coaster ride.
best of wishes
Love Liz

Since she has been in the hospital so much she actually has a team of Dr.s working on her. She is in Loma Linda University Hospital, supposedly one of the better hospitals. I can't personally tell you how good they are and I sometimes wonder myself...sigh. She was taking prednisone and that is most likely what has caused her bones to get soft---or that is what we are being told. They have stopped giving her the prednisone but it is the prednisone that was helping with the Myasthenia Gravis so much. Just can't seem to win!! My sister is 57 years old and up intil the onset of this disease she was the picture of health. She walked her dogs 3-5 miles each day. She lives in the mountains and was always an active person. She ate such healthy foods...I only wish I ate half as healthy! Her only problem before the MG hit was she had a tooth problem. She went to the dentist and had it fixed and wham! That very same day she started with the first symptom--double vision. It was one symptom after another after that. Don't know if the tooth/possible infection had anything to do with this but it is odd. Her wieght "was" good (now she is as thin as a rail). In this last year she has gone from a perfectly healthy person to a sickly, very depressed person. It is ripping me apart watching her go through this. We talk daily although just before she was diagnosed with MG I moved 3,000 miles away from her. Now we still talk by phone daily. I'm just trying to find out any and all information there is regarding Myasthenia Gravis. I need to know.....sigh. I guess I want a miracle. But miracles do happen and I will not give up!!!

Prednisone can effectively cause bone thinning or osteoporisis but I doubt it would act in a year or so. Considering her age, your sister had probably that condition before taking prednisone.
To obviate that risk, it is recommended, prednisone or not, to take Calcium (1000 mg/day) and vitamine D supplements.
There is also an other medication (Cyclosporine A) which might be prescribed for MG when when prednisone cannot be used.
Maurice.

About the relationship between MG and the dental work, some antibiotics can severely worsen MG symptoms, that's why it is imperative to mention your MG affection to any health personel (MD, dentist, surgeon…) you are in contact with, so that they can choose the medication appropriate to the situation.
Maurice.

Yes, we now understand all of that. She had never had any type of symptomes when she had her tooth fixed. I don't even know if she had an antibiotic when she had it repaired.
I have another question. The Dr.s have mentioned an A-B Fistula and an A-B-V Graft. Has anyone here heard of these? I did research it on-line but didn't find any information that would relate to treatments for my sister. Or at least I don't think they had any relatioship to treatments for her!! I am very anxious to better understand what they are talking about. As I have explained we live 3,000 miles apart and the Dr.s won't tell me much. I have to get most of my information from my brother in law or my sister. Thanks for any information.

Hi, I don't really know much about the fistula, or the other. Sorry. but the Novacaine, which really isn't novacaine anymore, can cause MG to react. I had a root canal about a year ago, and at first they gave me the regular stuff everyone gets, and I couldn't talk, swallow, or feel like the novacaine was wearing off.
So, I called my neuro and asked what I could take, as this was it Lidocaine (is what is used now instead of novacaine) caused me to have a terrible MG problem. the next time, I got the Carbocaine that was recommended by my neuro, and I had no problems. MG'ers should ask for Carbocaine. It's amazing how much is out there that can cause us problems. Home Page | Medical Issues | Upcoming Events | mgadetroit.org


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Medications Contraindicated for Patients with Myasthenia Gravis

MGA does not diagnose or prescribe. The following is general information. Always consult your physician before taking or discontinuing any medication(s).

Aminoglycosides: Tobramycin,
Gentamicin,
Streptomycin,
Kanamycin,
Neomycin,
Amikacin,
Paromomycin Amitriptyline*, Bactracin**
Barbiturates*
Beta-Blockers: Propranolol,
Oxprenolol,
Pindolol,
Practolol,
Sotalol,
Timolol (ophthalmic)** Chloroquine* Chlorpromazine**
CNS Depressants* Colchicine
Colistin Colistimethate** Corticosteroids** Decamethonium Diphenhydramine* Duiretics*
Droperidol* Echotheophate
Emetine* Erythromycine** Ethosuximide*
Gallamine
Haloperidol*
Impiramine*
Lidocaine
Lincomycin
Lithium**
Magnerium Sulfate Muscle Relaxants* Narcotics: Morphine,
Codine,
Meperidine,
Hydromorophone,
Opium (Pantopan (R))
Pancuconium Paraldehyde* Penicillamine
Phentyoin Procainamide**
Procaine
Quinine**
Respiratory:
Depressants* Sulfonamides** Sedatives*
Sodium Lactate** Succinylcholine Tetacycline**
Thyroid:
Replacements Tranquilizers* Trihexphenidyl Tubocurarine
* theoretically may worsen MG - no clinical reports
** worsens MG or causes MG-like syndrome
Henry Ford Hospital 1993



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MYASTHENIA GRAVIS, HERBS AND OTHER SUPPLEMENTS
Stephen TePastte, MD

Those of us with Myasthenia Gravis possess an antibody directing destructive forces towards our own healthy muscle tissue. The focus of the attack is specifically the post-synaptic junction, which receives nerve impulses at the neuromuscular junction. Anything that increases immune activity can worsen our MG. That is why stress and infection can wipe us out and sometimes even provoke a full relapse. We must then, be very cautious about exposing ourselves to any immune stimulation.

Prior to my diagnosis of Myasthenia Gravis in late 1998, I, unfortunately, took Echinacea, an herbal product, which purportedly reduces the severity and length of colds. Echinacea is a potent, nonspecific stimulator of immune function which for MG, or any autoimmune disease is bad. Unfortunately, subsequent studies have also shown Echinacea probably doesn't even work in fighting colds. I am, therefore, not happy that I exposed myself to that herbal product and caution you against using it ever.

In doing extensive research on vitamins, minerals and herbs, I have found some that do actually benefit us in some circumstances. Mostly though, what I found was that these products are, at best, only mildly effective and, at worst, potentially risky. Since no one is regulating these products we must arm ourselves with knowledge before considering taking any of them.

In general, it is appropriate with adults who have Myasthenia Gravis to take certain vitamins and minerals for general health promotion. It is probably especially important that we, with MG, take calcium supplements, as most of us will be on prednisone. Most likely we long-term prednisone users will also need to take a prescription medication to prevent osteoporosis along with the calcium.

Ephedrine, an old drug that was used as treatment for Myasthenia Gravis many years ago was "reinvented" as an herbal product called Ma Huang and targeted for weight loss and energy. It also is a main ingredient in heavily hyped multilevel marketed weight loss products. However, in Myasthenia Gravis, it can help muscle function as it has an action directly at the neuromuscular junction. It can be difficult to obtain and, if you do obtain it, make sure it's from a reliable source as there have been reports of inadvertent toxic levels in some products leading to some deaths in the United States. Do not use this without first discussing with your MG physician. Ephedrine or Ma Huang has not been shown to be effective for weight loss or energy enhancement.

Coenzyme Q-10 and creatine are two supplemental products that have been used in muscle diseases. They are mostly used by healthy people looking to augment or enhance their physical performance. Careful studies have not shown any definite benefit of these medications. Although they are probably fairly safe they are very expensive and not worth the risk of unknown ill effects not yet discovered. I would withhold use of these medicines until better studied in Myasthenia Gravis.

We with MG are fortunate to have a great deal of scientific knowledge known about our illness. This knowledge has allowed us, in most cases, to have our disease managed quite satisfactorily and, restored near normal lives. We owe this to advances in conventional medicine. Although we must always keep our minds open to all possibilities, we must not allow ourselves to be duped by fast buck artists and hucksters.

To better inform you about commonly used herbs, vitamins and other supplements you may obtain a copy of an article I recently wrote for a presentation on this topic. It is quite extensive and I think you might find it useful. You may obtain a copy by sending a stamped ($.55), self-addressed envelope to MGA.


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Please note that the medical views expressed are those of the author and do not reflect any official position of the Association, the MG Foundation or the Medical Advisory Board. Each person's circumstances are different. If you have a medical question, please contact your physician who will know what is best for you.



April 15, 2002
These are just a few things we need to be careful of..
I hope I helped some
http://www.neuro.wustl.edu/neuromusc.../immunerx.html
http://www.neuroland.com/nm/myas_gra.htm
If you need anything else, please feel free to ask away
best wishes
Love Lizzie

a/v fistulas are often used for access in long term plasmapheresis treatment for MG.
It's the same type of fistulas used for dialysis.
Please ask the surgeon what type of fistula your sister is going to have. One is a "natural" fistula, where they use her own artery & vein (usually in the left arm), the other type I believe is gore-tex. Gore-Tex is a man made substance & if your sister has had problems with staph infections in the past, it may become a problem again with this foreign substance in her body.

Please google "fistula" and "plasmapheresis" for more info.

The reason I know about this is because I had had fistula work done for pheresis about 25 years ago.

I am wondering if that A-B-V graft is the one that is like the gore-tex you are speaking of. I can't understand why the Dr.s would take a chance at putting something foreign in her since her big problems, as of lately, are reoccuring infections--staff and others! When you had you fistula how did it work for you? I would like to know the pros and cons about both of these. I appreciate you taking the time to respond here....I check this forum several times a day---it has become a part of my life now!! Thanks!!

I personally had several problems with clotting and infections with my Gore Tex fistula. I had it functional for less than 2 years and had several surgeries to either clear out the clots I seemed to build up or chnage the Gore Tex out, etc. I ended up with pretty bad staph (Thank God those were the days before prevelant MRSA). and had to have the GoreTex and some of my own surrounding tissue cut out.

The natural fistulas are when they take your own vein & artery and loop them together. I had less problems with those, infection wise. But I had a tendency to clot those up.

I don't understand why they wouldn't try a pheresis flow catheter in the chest first. It's a central line that is placed in the chest though some large vessels into the heart, I believe.The access lines hang out of the chest and while it is a foreign substance & still an infection risk...if her pheresis is going to be short term...it's easier to remove a pheresis flow catheter than it is a fistula (which is meant to be a permanent thing).

I totally understand the issue of you living 3,000 miles away from your sister, but if there is anyway some kind of conference call could be put in to the vascular doc or infectious disease doc or the neuro, so you could help your sister make her choice.

It's so hard to make a choice when you're up against a wall & feel that you have NO choice since your life depends on getting the treatments you need.

I'll keep checking here as I can. I'm having some issues of my own in getting my IVIG covered. I have been in your sister's shoes and will keep her in my thoughts.

Hang in there. She's lucky to have a sister who cares so much.