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Board: Muscular Dystrophy 11-01-2013, 03:58 PM
Replies: 3
Views: 2,542
Posted By michigani
My Latest Clinic Appointment

Hey everyone! I haven't been on in a while. I am doing fine. Getting along as things get a bit tougher each month. I have been fortunate enough that my wife and I were able to finally build an...
Board: Muscular Dystrophy 06-25-2012, 09:40 AM
Replies: 39
Views: 11,206
Posted By michigani
Re: What Emotions are you dealing with?

Hi Monnie,

A cane definitely helps people realize and understand that you have a problem. It hard accepting and using a cane but take it from someone's who's been through all of the stages from...
Board: Muscular Dystrophy 05-04-2012, 10:41 AM
Replies: 5
Views: 1,586
Posted By michigani
Re: Is it muscular dystrophy?

Hey PAfire,

This could be a really long answer but I'll try to keep it very brief. I have MD. Diagnosed at 41, now I am 51. I've spent 10 years reading and learning all i can.

Some MDs are...
Board: Muscular Dystrophy 05-04-2012, 10:27 AM
Replies: 5
Views: 1,632
Posted By michigani
Re: travelling with MD

I've not flown since I got MD. But I wondered this myself. My niece flies monthly and she told me she's seen many people in wheelchairs fly and they usually get the person in their seat then park the...
Board: Muscular Dystrophy 02-06-2012, 09:51 AM
Replies: 4
Views: 2,172
Posted By michigani
Re: Is anybody's LGMD spreading outward?

Thanks for the advice. Believe me! I've spent years studying every type of MD and talking with my neurologist about each one. I am very familiar with Miyoshi and LGMD2B. But I've been tested negative...
Board: Muscular Dystrophy 01-13-2012, 11:31 AM
Replies: 2
Views: 659
Posted By michigani
Re: Just checking in!!!

Hi "S" ! Good to hear from you. I haven't been posting nearly as much as I used to but I stop by once a week or so to see what everyone's been up to. I'm okay. Everything's a bit harder than a year...
Board: Muscular Dystrophy 01-12-2012, 10:31 AM
Replies: 17
Views: 4,710
Posted By michigani
Re: When do i need a walking aid?

Best of Luck! Thank you for the update!
Board: Muscular Dystrophy 10-21-2011, 03:03 PM
Replies: 2
Views: 959
Posted By michigani
Re: Pain

Mandy,

My shoulder hurts a lot. I know that I have injured it over the years by putting too much stress on it. I really push and twist it getting up stairs and out of chairs, etc. It throbs for...
Board: Muscular Dystrophy 10-11-2011, 10:48 AM
Replies: 2
Views: 886
Posted By michigani
Thumbs up Re: Sport

Mandy, that's awesome! Thanks for sharing your experience. It's always nice for us to be able to participate in an activity that makes us feel "normal".

Mark
Board: Muscular Dystrophy 09-15-2011, 10:38 AM
Replies: 5
Views: 1,932
Posted By michigani
Re: New to the board, would like to talk about LGMD

Hi Emma and welcome!

I've seen posts 10 times that long!

Believe me, and I speak for many others on this board.....I have LIVED what you are going through at the moment. I hid my symptoms for...
Board: Muscular Dystrophy 09-10-2011, 02:18 PM
Replies: 5
Views: 3,089
Posted By michigani
Re: Muscle Biopsy: Have you had one?

diznee25,

I have had one. In a nutshell: I went to the local hospital and checked in as an out-patient. I changed into a gown and they put me on a gurney. I was wheeled into a small O.R. or more...
Board: Muscular Dystrophy 09-08-2011, 10:48 AM
Replies: 3
Views: 2,109
Posted By michigani
Re: Do these symptoms seem like Muscular Dystrophy?

Hi manc1978,

I've had adult muscular dystrophy for 10 years. Like Dreaman I also feel that it is highly unlikely that your father's symptoms are MD. Muscular Dystrophy is usually a slow process....
Board: Muscular Dystrophy 09-03-2011, 02:43 PM
Replies: 4
Views: 2,172
Posted By michigani
Is anybody's LGMD spreading outward?

LGMD is basically a proximal (in proximity to the trunk) disease as opposed to distal (distant from the trunk). I've always felt that my weakest muscle groups were indeed my stomach, hips and...
Board: Muscular Dystrophy 08-30-2011, 09:38 AM
Replies: 1
Views: 2,644
Posted By michigani
Re: Muscular Dystrophy in a three year old boy

Hi jjjsa,

I don't know if I can help or put you at ease but let me share what I know. I am a 50 year old male with MD and I've done extensive research on every type of MD because we are not sure...
Board: Muscular Dystrophy 08-26-2011, 12:18 PM
Replies: 6
Views: 2,129
Posted By michigani
Re: explain leg problems to friends and family

I often think that the only people on earth who understand are the people on this site. Even the people who love us the most don't and cannot understand.

I've attempted to explain by saying "Tie...
Board: Muscular Dystrophy 08-22-2011, 11:25 AM
Replies: 30
Views: 9,479
Posted By michigani
Re: Does this happen to anyone else?

Hi tmb......

That's sounds like quite an experience and not much of it very fun. I am sorry about all the difficulties you encountered. I can appreciate all of the physical obstacles you...
Board: Muscular Dystrophy 07-25-2011, 11:23 AM
Replies: 9
Views: 3,962
Posted By michigani
Re: your opinion/advice on taking creatine and COQ10.

I've taken CoQ10 for years and kept a diary for my doctor. I took 400mg each morning and 800-1000mg dose if I went out somewhere that I anticipated getting tired. It helped.

The affect only lasts...
Board: Muscular Dystrophy 07-25-2011, 10:50 AM
Replies: 6
Views: 2,867
Posted By michigani
Re: Neurocardiogenic Syncope

Hey NP,

I'm sorry about the physical problems and I'm sorry about the depression (which in my opinion is worse). I hope you can get them both worked out.

My problem is almost opposite of yours....
Board: Muscular Dystrophy 07-16-2011, 10:44 AM
Replies: 17
Views: 4,710
Posted By michigani
Re: When do i need a walking aid?

I second what Dreaman said (07-06-2011):

Let me just reiterate.....

You know that the time has come for a walking aid or a new phase of walking aid when you don't feel safe taking a step...
Board: Muscular Dystrophy 07-13-2011, 02:10 PM
Replies: 7
Views: 1,783
Posted By michigani
Re: Venting

Hi Mandy,

I believe you have looked at the items I described. If you can find a store or dealer in S.A. that sells home living aids they are usually VERY helpful to allow you to try these things...
Board: Muscular Dystrophy 07-12-2011, 09:04 AM
Replies: 7
Views: 1,783
Posted By michigani
Re: Venting

Mandy,

I have a "Breakdown day" 2 or 3 times a year. I know EXACTLY what you felt like and what you experienced. These emotional breakdowns always follow an episode of "not being able to do...
Board: Muscular Dystrophy 07-06-2011, 12:39 PM
Replies: 23
Facioscapulohumeral Homebound
Views: 4,670
Posted By michigani
Re: Homebound

2807,

I am still driving....somehow. Through divine intervention, perseverance, strategy or all of the above. I drove an automatic years before my diagnosis. 3 years after diagnosis I began to...
Board: Muscular Dystrophy 07-02-2011, 02:39 PM
Replies: 23
Facioscapulohumeral Homebound
Views: 4,670
Posted By michigani
Re: Homebound

Dreaman & yncruzr,

You are both right. A positive attitude is paramount to dealing with MD or any illness. For years I've told others "By far the most important thing is what's going on in your...
Board: Muscular Dystrophy 07-01-2011, 11:12 AM
Replies: 23
Facioscapulohumeral Homebound
Views: 4,670
Posted By michigani
Re: Homebound

I LOVE my Kindle. If anyone with MD has thought about one, you can make the font as big as you need (up to 1/2 inch at least) and with most of the newer books the Kindle will read to you and turn the...
Board: Muscular Dystrophy 06-28-2011, 09:41 AM
Replies: 23
Facioscapulohumeral Homebound
Views: 4,670
Posted By michigani
Re: Homebound

You found the place. You can talk to others right here.

MD certainly affects a person mentally as much or more than than it affects them physically. I also went from being very active.....golfing,...
Board: Muscular Dystrophy 06-24-2011, 01:06 PM
Replies: 3
Views: 1,617
Posted By michigani
Re: Centro-nuclear myopathy

Hi tmb,

I have an extensive database of 70+ types of muscular dystrophies. I didn't remember yours, but upon checking, I do have a little info:

Centronuclear Myopathy
AKA: Myotubular Myopothy...
Board: Muscular Dystrophy 06-22-2011, 10:07 AM
Replies: 8
Views: 2,520
Posted By michigani
Re: Does anybody else get charlie horses

Yes. I do. It's not too often but once in a while, usually while sitting watching TV or riding in the car, I'll get a charlie horse in my calf or in my thigh. They're very uncomfortable but usually...
Board: Muscular Dystrophy 06-20-2011, 12:27 PM
Replies: 4
Views: 3,043
Posted By michigani
Re: Dropping items

During your EMG, it is possible that the doctor pricked a small nerve. This is not common but I think it can happen. During my muscle biopsy, my doctor clipped a nerve extracting the muscle sample. I...
Board: Muscular Dystrophy 06-16-2011, 11:12 AM
Replies: 5
Myotonic medication
Views: 1,695
Posted By michigani
Re: medication

Afterthought.....

Marlene, have you seen my posts on Albuterol? I am on Albuterol for fatigue. Pill form, 8mg, 3 times a day. That's 24mg/day.

Albuterol is almost exclusively an asthma drug....
Board: Muscular Dystrophy 06-16-2011, 11:05 AM
Replies: 5
Myotonic medication
Views: 1,695
Posted By michigani
Re: medication

Hi Marlene,

I'm not sure I have an immediate, satisfactory answer for you. Some of these medication costs are beyond ridiculous. Remember of course that you are paying for the millions of dollars...
Board: Muscular Dystrophy 06-15-2011, 02:31 PM
Replies: 17
Views: 4,710
Posted By michigani
Re: When do i need a walking aid?

It's very emotionally hard to start using a walking aid. I went through every phase of walking aids. First a cane. Then a rollator walker. Now i use a 4 wheeled scooter out doors. You will know when...
Board: Muscular Dystrophy 06-11-2011, 09:14 AM
Replies: 5
Views: 1,864
Posted By michigani
Re: My Future

Actually I didn't think much of it. I did it out of love, not obligation. It was just part of my day. Imagine (God forbid) taking care of a child with an illness. You would never resent the...
Board: Muscular Dystrophy 06-09-2011, 11:52 AM
Replies: 5
Views: 1,864
Posted By michigani
Re: My Future

No problem. And I'm glad that your ex and you are still friends.
I'm nervous about my future too, but it will work out. Somehow things always do.

mark
Board: Muscular Dystrophy 06-07-2011, 08:58 AM
Replies: 5
Views: 1,864
Posted By michigani
Re: My Future

Hi Mandy,

First of all......how is your relationship with your ex-husband?

If it's good then he should be helping to figure out what should be done. If it's not good then, respectfully, it's...
Board: Muscular Dystrophy 06-06-2011, 01:14 PM
Replies: 12
Views: 5,152
Posted By michigani
Re: My Guinea Pig Testing

Absolutely. Talk to the doctor. The side affects were minimal. I felt like I'd had a strong cup of coffee after taking a dose early in the treatment but that all went away within a week. I can't...
Board: Muscular Dystrophy 06-01-2011, 01:17 PM
Replies: 5
Views: 3,843
Posted By michigani
Re: MD and digestive issues?

As a matter of fact, I just went to MD Clinic yesterday....May 31st. I asked my doctor if my new issues were related to the MD. He said they are very common in MD patients. The abdominal muscles just...
Board: Muscular Dystrophy 05-31-2011, 09:41 AM
Replies: 5
Views: 3,843
Posted By michigani
Re: MD and digestive issues?

I have LGMD. I've experienced increased issues with acid reflux and occasional constipation since being diagnosed. Neither of these was ever a real issue until about 2-3 years ago. I was first...
Board: Muscular Dystrophy 05-20-2011, 07:59 AM
Replies: 5
Views: 1,567
Posted By michigani
Re: Appreciations

Mandy,

Your list is identical to mine with a couple of exceptions: I don't attempt garden work except from my scooter, and I always need help on the stairs, at least the last 4-5. I can never get...
Board: Muscular Dystrophy 05-19-2011, 11:05 AM
Replies: 19
Views: 6,173
Posted By michigani
Re: Possible MD?

Hey Gerry,

I'm really glad you have at least found out some answers and received a diagnosis. That's the first huge hurdle in any case of MD.

My definitive diagnosis is still eluding my doctors...
Board: Muscular Dystrophy 05-17-2011, 09:36 AM
Replies: 30
Views: 9,479
Posted By michigani
Re: Does this happen to anyone else?

Hi Dreaman,

First....I also must lock my knees before I can stand. I have a lift recliner at home. Once it's all the way up, I lock my knees and push myself up by putting my palms flat on the...
Board: Muscular Dystrophy 05-17-2011, 08:26 AM
Replies: 30
Views: 9,479
Posted By michigani
Re: UpEasy Seat Cushion

Will it help? It will CHANGE your life !!!!

It's a padded, spring loaded cushion, somewhat like a clam shell. Actually it's NOT spring loaded but it has a damper piston in it exactly like the ones...
Board: Muscular Dystrophy 05-17-2011, 08:14 AM
Replies: 16
Views: 4,002
Posted By michigani
Board: Muscular Dystrophy 05-16-2011, 10:56 AM
Replies: 30
Views: 9,479
Posted By michigani
Re: Does this happen to anyone else?

I can't believe it. This has ALL happened to me!!! Dreaman, do you have an UpEasy Seat cushion? I have 2. One I use in the house for the dinner table, computer chair, whatever; and the second that I...
Board: Muscular Dystrophy 05-16-2011, 10:48 AM
Replies: 16
Views: 4,002
Posted By michigani
Update: My friends still don't get it

Dreaman,

I remember well, about 7-8 years ago, when I was still using a cane, I would go out to eat and the minute I sat down in a booth or at a table I was already worrying about getting up...
Board: Muscular Dystrophy 05-15-2011, 09:44 AM
Replies: 13
Views: 2,785
Posted By michigani
Re: Yet another one of my strange questions

Hey P,
I didn't realized that you'd never been to MD Clinic. I hope it's a positive experience for you. I love my doctor and all the staff at my local office and at clinic. They're awesome!
Mark
Board: Muscular Dystrophy 05-14-2011, 03:33 PM
Replies: 13
Views: 2,785
Posted By michigani
Re: Yet another one of my strange questions

Hey P,

Since being diagnosed, I have a bit more trouble coughing junk up as well. But the problem has never been so bad that I get scared or anything. Just takes a bit longer to get over it....
Board: Muscular Dystrophy 05-13-2011, 08:48 AM
Replies: 30
Views: 9,479
Posted By michigani
Re: Does this happen to anyone else?

Mandy,

I don't like walking with shoes either. I only wear tennis shoes when I leave the house. Dress shoes feel very awkward and I don't like it at all when I have to dress up for a wedding or...
Board: Muscular Dystrophy 05-07-2011, 01:23 PM
Replies: 9
Views: 3,100
Posted By michigani
Re: Tight Hip Flexors then not

I get sciatic nerve pain once in a while. Very painful and I cannot get comfortable. Usually lasts a few hours to most of a day. Then the next morning the pain is gone without a trace. But this...
Board: Muscular Dystrophy 05-04-2011, 11:33 AM
Replies: 11
Views: 2,351
Posted By michigani
Re: Doc appt Monday

LOL !!!!! Actually, I've met a few !
Board: Muscular Dystrophy 05-02-2011, 10:51 AM
Replies: 11
Views: 2,351
Posted By michigani
Re: Doc appt Monday

Terry,

Research this type of MD: Hereditary Inclusion Body Myopathy
My doctor suspected it (HIBM) for a while but the biopsy results ruled it out. HIBM is dominant inheritance meaning if a parent...
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