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Board: Eye & Vision 05-16-2013, 05:52 AM
Replies: 2
Views: 116
Posted By Monnie45
epiretinal membrane surgery

Hi, according to my eye doctor I have an epiretinal membrane in both eyes. At this point it doesn't seem to be affecting my vision any and do not need surgery but that could change in the future. I...
Board: Muscular Dystrophy 04-28-2013, 07:55 AM
Replies: 1
Views: 222
Posted By Monnie45
tightness in head

Hi, for many years I have had a general tightness in my had. I do not have any pain, just some discomfort. It makes me feel generally fatigued. About 7 years or more ago I was diagnosed with...
Board: Muscular Dystrophy 04-08-2013, 06:43 AM
Replies: 1
Views: 432
Posted By Monnie45
Re: Does this sound like MD

Hi, I have a form of muscular dystrophy called myotonic dystrophy. Although I do not have the problem with muscles not being able to relax, that is one of the symptoms of the disease.

Markebe
Board: Incontinence 04-08-2013, 06:09 AM
Replies: 1
Views: 203
Posted By Monnie45
incontinence

Hi, I have been having problems with incontinence for years. I have had surgery to no avail. Leakage of urine doesn't bother me much, it is the other that has caused problems. I have seen a...
Board: Anxiety 03-17-2013, 07:15 AM
Replies: 0
Views: 148
Posted By Monnie45
worrying about kids

Hi, I am new to this group. I have a problem, I worry so much about my kids. I have three. They are afraid to tell me something is wrong knowing how I will react. My youngest daughter just lost her...
Board: Muscular Dystrophy 12-10-2012, 07:39 AM
Replies: 1
Views: 487
Posted By Monnie45
regarding sleep

Hi, I have myotonic dystrophy. I go to sleep quite early. In most cases I shut off my lights at about 8 PM. Most times I fall asleep fairly quickly and sometimes it takes me awhile. I am usually...
Board: Muscular Dystrophy 11-24-2012, 07:31 AM
Replies: 7
Views: 1,164
Posted By Monnie45
Re: Myotonic DNA test

Hi, I had a test for Myotonic Dystrophy 2 several years ago. I got my results fairly quickly, probably in about a week. Unfortunately, it was positive.
Board: Muscular Dystrophy 09-30-2012, 01:14 PM
Replies: 0
Views: 499
Posted By Monnie45
living alone

Hi, I have Myotonic Dystrophy 2. At this point, I have limited problems. My basic problems is climbing stairs especially without railings. Luckily I live in a condo on the bottom floor, no stairs....
Board: Muscular Dystrophy 09-27-2012, 01:02 PM
Replies: 1
Views: 496
Posted By Monnie45
Medicatons for fatigue

Hi, I have Myotonic Dystrophy2. Marlene S. Cohen posted a discussion.
Medication for fatigue I have not taken any medication yet for fatigue. I did try Nuvigil for several weks and wasn't sure I...
Board: Muscular Dystrophy 06-24-2012, 01:04 PM
Replies: 39
Views: 10,096
Posted By Monnie45
Re: What Emotions are you dealing with?

Hi, I have Myotonic Dystrophy 2. I am 67 years old and do not look disabled. People don't understand sometimes. I do have difficulty with steps and when there is a steep curb need to ask for help. ...
Board: Muscular Dystrophy 06-13-2012, 11:26 AM
Replies: 4
Views: 860
Posted By Monnie45
strength in one leg versus another

Hi, I have noticed something lately. I have MD2, I can still step on onto a curb with my left foot if it isn't too steep without a railing but cannot seem to do it with my right foot. I also...
Board: Muscular Dystrophy 02-19-2012, 10:09 AM
Replies: 2
Views: 1,106
Posted By Monnie45
Re: Tightness in head

Thanks for your responce. Don't know too much about "Hugs", sorry.
Board: Muscular Dystrophy 02-13-2012, 06:31 AM
Replies: 2
Views: 1,106
Posted By Monnie45
Tightness in head

Hi, I have addressed this before but for years I have mentioned to the doctor about a tighness in my forehead. Honestly, it also can pass for a feeling of low level lightheadednss. Several years ago...
Board: Muscular Dystrophy 12-25-2011, 07:26 AM
Replies: 0
Myotonic strength in legs
Views: 622
Posted By Monnie45
strength in legs

Hi, I have noticed within the last months that I can step up onto a curb with my left leg without any support but I cannot do it with my right leg. I am right handed, don't know if that has a...
Board: Cystic Fibrosis 07-05-2011, 05:48 AM
Replies: 6
Views: 3,449
Posted By Monnie45
Re: Daughters chane of having baby with Cystic Fibroisis

High, QuickDraw, thanks for your reply. My daugher is almost 5 months pregnant and decided to get tested for Cystic Fibrosis. It was never confirmed that she was a carrier and she was not a...
Board: Muscular Dystrophy 06-16-2011, 11:24 AM
Replies: 5
Myotonic medication
Views: 1,496
Posted By Monnie45
Re: medication

Thanks for the info about arbuterol, I will ask my doctor about it.

Marlene
Board: Muscular Dystrophy 06-16-2011, 11:20 AM
Replies: 5
Myotonic medication
Views: 1,496
Posted By Monnie45
Re: medication

Hi, Mark, thanks for the info but I am 66, have been on Medicare for over a year and have been collecting Social Security for five months. I did check with my pharmacist and my Medicare Part D...
Board: Muscular Dystrophy 06-15-2011, 06:44 AM
Replies: 5
Myotonic medication
Views: 1,496
Posted By Monnie45
medication

Hi, my doctor prescribed provigil for me for fatigue. I checked with the pharmacy and although I have medicare, the cost if substantial and I will be in my donut hole quickly. It runs about 500...
Board: Cystic Fibrosis 04-28-2011, 02:50 PM
Replies: 6
Views: 3,449
Posted By Monnie45
Re: Daughters chane of having baby with Cystic Fibroisis

Hi, I don't know that my daughter is a carrier, it was just a hunch that the doctor had when she was a child because the test for CF came back as high normal. Thanks.
Board: Muscular Dystrophy 04-28-2011, 02:48 PM
Replies: 5
Views: 1,763
Posted By Monnie45
Re: general fatigue

Hi, thanks, I am also battling with Meniere's Disease and just have difficulty getting through the day. I wish I lived closer and could give you a physical hug.

Marlene
Board: Cystic Fibrosis 04-26-2011, 04:08 PM
Replies: 6
Views: 3,449
Posted By Monnie45
Daughters chance of having baby with Cystic Fibroisis

Hi, about twenty years ago, when my daughter was tested fo Cystic Fibrosis because of her small size. She was not quite 5 feet and weighted under 100 pounds and still is. She had her share of...
Board: Muscular Dystrophy 04-26-2011, 03:43 PM
Replies: 5
Views: 1,763
Posted By Monnie45
Re: general fatigue

Hi, thanks Mark.
Board: Muscular Dystrophy 04-25-2011, 09:03 AM
Replies: 16
Views: 3,657
Posted By Monnie45
Re: My friends still don't get it

Surprisingly enough, she is a great dentist. She gives a local before administering anesthesia so you don't even feel the needle. Surprising, isn't it.
Board: Muscular Dystrophy 04-25-2011, 06:54 AM
Replies: 5
Views: 1,763
Posted By Monnie45
Re: general fatigue

Another comment, several years ago before being diagnosed with MD2 I was also diagnosed with Meniere's Disease, an inflammation of the middel ear, causing me to feel like I was on a boat. My hearing...
Board: Muscular Dystrophy 04-25-2011, 06:17 AM
Replies: 16
Views: 3,657
Posted By Monnie45
Re: My friends still don't get it

Mark, sorry to hear your frustration. Of all people you are the one that is always there for us. I can almost always expect a reply from you when I am frustrated. People don't always understand. ...
Board: Muscular Dystrophy 04-25-2011, 05:54 AM
Replies: 5
Views: 1,763
Posted By Monnie45
Angry general fatigue

Hi, I do appreciate that muscular diseases can cause fatigue but I always seem to be tired and have a lack of energy. Sometimes I would just rather lay in bed watching lifetime movies on TV. I am...
Board: Muscular Dystrophy 03-07-2011, 12:22 PM
Replies: 30
Views: 8,843
Posted By Monnie45
Re: Does this happen to anyone else?

I do understand. I am in fairly good shape now but do have difficulty with stairs. I am feeling more strain going up a curb and if I am descending from a curb, I have to be very careful. I did...
Board: Muscular Dystrophy 03-07-2011, 07:00 AM
Replies: 30
Views: 8,843
Posted By Monnie45
Re: Does this happen to anyone else?

Hmm, I think my fear of stepping on the escalator was the same thing......read my question. The level steps seem to go so fast that I was afraid to step onto them. My girlfriend says I shouldn't...
Board: Muscular Dystrophy 03-07-2011, 05:10 AM
Replies: 1
Views: 907
Posted By Monnie45
escalator

Hi, I had something happen to me yesterday, it has never happened before. I went to the mall with a friend, had no trouble going up the up escalator, no trouble getting off but than I was getting on...
Board: Muscular Dystrophy 02-20-2011, 08:15 AM
Replies: 2
Views: 889
Posted By Monnie45
another question

Hi, me again. I have noticed that when I am stepping up onto a curb, I find it much easier to step up with my left foot rather than my right. Actually I can step up with my right but find I seem to...
Board: Muscular Dystrophy 02-20-2011, 06:55 AM
Replies: 3
Views: 813
Posted By Monnie45
Windy Day

Hi, several times when the wind was very strong I honestly felt as though I would fall. I walk without an aid but the wind made me feel very insecure. Anyone else feel this way.

Marlene
Board: Muscular Dystrophy 01-15-2011, 04:54 AM
Replies: 4
Views: 1,574
Posted By Monnie45
Re: exercise

Mandy, well, your sense of humor is still very strong. Thanks so very much for your post. I am fairly active at this point and hope to remain so.
Board: Muscular Dystrophy 01-09-2011, 06:10 AM
Replies: 4
Views: 1,574
Posted By Monnie45
exercise

Hi, I have myotonic dystrophy 2 and wonder what type of exercise is best for me to do. I appreciate that exercise in excess can be harmful. I do however want to keep whatever muscle strength I...
Board: Muscular Dystrophy 12-26-2010, 08:18 AM
Replies: 0
Views: 1,303
Posted By Monnie45
cholesterol medication

Hi, I have high cholesterol and am now taking cholestyramine twice a day before meals. I hate it. I know that it can interfer with other medication. Other meds should be taken one hour before or...
Board: Muscular Dystrophy 11-28-2010, 06:32 AM
Replies: 1
Views: 1,323
Posted By Monnie45
Differences between MD's.

Hi, I have myotonic dystrophy 2, what is the differerance between Limb Girdle and other muscular dystrophys.

Marlene
Board: Muscular Dystrophy 11-21-2010, 07:42 AM
Replies: 1
Views: 1,531
Posted By Monnie45
Living alone

Hi, I am 65 years old, diagnosed several years ago with myotonic dystrophy 2and at this point my symptoms are not life altering. I am still working as a hygienist, getting tired, though and ready to...
Board: Muscular Dystrophy 11-21-2010, 07:24 AM
Replies: 5
Views: 3,012
Posted By Monnie45
Re: Questions: Husband and Daughter with MD

Hi, I have myotonic dystrophy 2 and I live in Silver Spring. I have been seeing a rhumatologist but wonder how much he really knows about the disease. I was sent to another rhumatologist though for a...
Board: Muscular Dystrophy 11-21-2010, 07:22 AM
Replies: 5
Views: 3,012
Posted By Monnie45
Re: Questions: Husband and Daughter with MD

Hi, I have myotonic dystrophy 2 and I live in Silver Spring. I have been seeing a rhumatologist but wonder how much he really knows about the disease. I was sent to another rhumatologist though for...
Board: Muscular Dystrophy 11-20-2010, 03:38 PM
Replies: 12
Views: 4,699
Posted By Monnie45
Re: Stairs....I hate 'em!

Hi, Mark, I have seen your name a lot, Michigani. Are you on other boards as well? You always seem to know so much. I have a hard to hold bladder but I have had three children and that is not...
Board: Muscular Dystrophy 11-20-2010, 07:57 AM
Replies: 12
Views: 4,699
Posted By Monnie45
Re: Stairs....I hate 'em!

Mark, I have myotonic dystrophy 2. I was diagnosed several years ago by a blood test.

Marlene
Board: Muscular Dystrophy 10-25-2010, 05:02 AM
Replies: 2
Views: 1,525
Posted By Monnie45
type of doctor

Hi, I have Myotonic Dystrophy 2 and am seeing a rhuematologist. Most people with muscular diseases are seeing nuerologists. Any suggestions. Thanks.

Marlene
Board: Muscular Dystrophy 10-18-2010, 03:42 AM
Replies: 2
Views: 1,227
Posted By Monnie45
Re: High dose flu shot

Thanks, actually I did get the regular. The pharmicist was a bit skeptical of the high dose and I called my doctor and she recommended the regular. Us oldies...........huh!!!!!!! :(
Board: Muscular Dystrophy 10-04-2010, 12:14 PM
Replies: 2
Views: 1,227
Posted By Monnie45
High dose flu shot

Hi, I am 65 with myotonic dystrophy2 and need my flu shot. I am also a healthcare provider. Does anyone know of any contraindications to the high dose flu shot.

Marlene
Board: Muscular Dystrophy 06-27-2010, 11:03 AM
Replies: 12
Views: 4,699
Posted By Monnie45
Re: Stairs....I hate 'em!

I am able to get up and down stairs but slowly and with difficulty. I am also able to get up one curb but noticed today that it is very difficulty with my right foot, with my left it is much easier....
Board: Muscular Dystrophy 06-27-2010, 10:56 AM
Replies: 4
Views: 1,625
Posted By Monnie45
peoples attitude

One thing that really bothers me is some peoples attitude. I work in a dental office and one of the dentists criticizes for my lost of strength. She started by criticizing me for working slowly,...
Board: Muscular Dystrophy 05-02-2010, 07:07 AM
Replies: 0
Views: 1,375
Posted By Monnie45
Tightness in forehead

Hi, I believe I asked this question before but don't remember getting any good answer. For years I have complained about a tight feeling in my forehead which seems to be related to the unstableness...
Board: Muscular Dystrophy 05-01-2010, 03:01 PM
Replies: 1
Views: 1,253
Posted By Monnie45
Cholesterol

Hi, I was put on Questran (the generic) for high cholesterol. I was on statins for years until it was discovered that I had MD2. The statins worked well. My doctor seems OK with the results of the...
Board: Muscular Dystrophy 10-24-2009, 06:08 AM
Replies: 0
Views: 1,655
Posted By Monnie45
lots of questions

Hi, I have not written for awhile, still trying to accept a diagnosis of MD2. Let me tell you my story. Three times in my life I have had problems with vertigo, the room did not spin but I felt...
Board: Muscular Dystrophy 10-24-2009, 05:59 AM
Replies: 10
Views: 7,224
Posted By Monnie45
Re: Could I possibly have MD?

Hi, I was diagnosed after finding that my CPK was elevated. Have you had that tested? I gather normal is no highter than about 150, mine was 700. Granted, I had other tests after that but that was...
Board: Muscular Dystrophy 07-11-2009, 12:54 PM
Replies: 2
Views: 1,826
Posted By Monnie45
Re: Help needed to find genetic testing lab.

My blood test was done by Athena Labs, check the Internet. My doctor referred me to them.

Marlene
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