My neurologist has given me a diagnosis of LGMD. I have not undergone any testing to figure out which one because frankly, I can't afford to spend a lot on these tests.
Does anyone else have a problem with double vision? From what I've read, this doesn't seem to be a common symptom with LGMD. My neurologist(s) have said that I have restricted gaze -- I cannot follow their fingers as far up, down, left or right as normal.
As I've told my doctor, I find the double vision more of a problem when I'm tired. First thing in the morning I have the problem and sometimes in the evenings while watching TV in bed. I find it really frustrating sometimes because I'm trying to watch a program, but I see two of every person!!
I also find it sometimes if my husband and I go somewhere and I wait in the car for him while he does his errand. When he's walking back to the car, I see two of him coming!! Sometimes I can get my eyes to refocus, but sometimes I cannot.
I was just wondering if anyone else has this problem.
Does it feel like there's a little man inside your head gently tugging on the muscles of your eyes, like a rider pulling the reins on a horse? That's how I felt.
You might remember I started a thread "Vision Problems with MD...Anybody else?" dated 04-26-2006. It's quite a ways down the list. I experienced the same double vision. Not pleasant at all. You actually replied to my post back then. Anyway......the problem was bad for a while but I'm fortunate that it hasn't bothered me for over a year. Here's what I did about it:
Talked to my MDA doctor. He sent me to an Ophthalmologist. I explained the whole MD thing to him. He did a thorough eye and eye muscle exam. Saw no deterioration or problem that a "healthy" person wouldn't experience. So he didn't feel it was MD related. He wants to see me every 2 years.
I take a multi-vitamin every day to be sure I'm getting all my electrolytes. Also my MDA doctor asked me to try something: take a huge dose of CoQ10 if I'm experiencing the double vision and see if that helps. Well, I haven't really had a double vision episode since he asked so I don't know.
I've always felt the vitamins/electrolytes helped. But try to see an ophthalmologist to be sure. I know it's a very unnerving sensation.
Have you had your thyroid checked? The reason I ask is that I have been diagnosed with hypothyroid and am amazed at how many things thyroid is responsible for and alot mimics MD syptoms. I have had thigh pain, weaknes and tenderness for a few months now, and thought wow, is my MD progressing that much. Then with being recently having thyroid disorder I read that thigh pain etc. is a symptom! Iam going to my GP on Friday to try and figure this out. Vision problems are also something I noticed as a symptom.
I found alot of my info on this site. (Thyroid Disorders)
Thanks for the info about thyroid. I know it was checked in the past, but I don't think it's been checked recently. I have an appointment with my GP in June and will discuss this with him at that time.
I have Myasthenia Gravis (heavily undiagnosed) and those are the exact symptoms I had. I was lucky I knew some doctors and got fast tracked to my diagnosis. Please check with your doctor about that! There are very effective medications that work pretty fast.
Actually, my father had Myasthenia (he's deceased now) and that was one of the first things we checked on. According to my doctors, my test results do NOT support the MG diagnosis, plus I have more symptoms that don't usually go with MG.
I am convinced that I inherited stuff from BOTH my parents (they are both deceased so checking on them isn't possible). My father DID have MG, but my mother started having severe problems in her 40's, but was never diagnosed with anything (she was called lazy). She became extremely weak and couldn't walk any distances, had trouble with steps, etc. I think she was having symptoms of MD, but attributed them to getting older and never investigated them. When my father started having big problems with his eyes, he did see the doctors and got the MG diagnosis.
My test results support the MD diagnosis and Limb-Girdle is the most likely. While I know there's a ton of testing for different forms of LGMD, I don't have the resources to pay for them.
Thanks for the information though Flying.Monk. It's always good to have new ideas.
That's interesting that both of your parents had symptoms. Certainly, you have mentioned this to your doctors, I assume. This fact would point to a recessive LGMD...one of the Type 2s, i.e. LGMD2A to LGMD2K. My dad had LGMD, but what type we have no idea, and I believe his grandmother had it. So I strongly suspect a Dominant type for my own illness. My mom is alive and well at 75 this year with no muscle problems.
I told you before about my database. I spent months gathering data on all known MDs trying to figure mine out. According to my info there is only one type 2 LGMD that has facial symptoms. I may be WAY off but I'm just trying to help. Here's the facts I have collected on it:
Limb-Girdle Type 2H (LGMD2H)
also known as: Manitoba-Heetterity (not sure of spelling)
Sometimes looks like FSH MD
Inheritance: Recessive (but found mostly in Canada)
Gene Locale: 9q31-33
Avg. Age Onset: 8-27
Blood CK: less than 4500
Do you have any health insurance. My MDA doctor can usually get the tests approved stating it's medically necessary. I've had 3 or 4 genetic tests ran. But he only does it if he feels there's a reasonable hope for positive results (no shot in the dark strategy). It's probably a long-shot but I thought I'd offer it. Keep us posted.
In my particular situation, I've actually seen about four neurologists regarding my condition. The first three were during the "let's find out what's going on" phase and they were all at the same practice. My father's issues were discussed and researched indepth and since it was before privacy laws got so strict, we were able to obtain many of my father's records from his physician (my father was already deceased by then). Since my mother never saw a doctor over her weakness and was never diagnosed, it's impossible to really check on anything regarding her.
When my family moved in 2004, I had to find a new neurologist and ended up finding a fabulous doctor at a major university hospital. I made sure he had all the records from my previous doctors and brought him totally up to speed on everything else. Surprisingly, he disagreed with my previous doctors diagnosis -- my previous doctor said I had Myotubular Myopathy, but this doctor disagrees and has me listed as Limb-Girdle. As I've said in other posts, my current neurologist did say he wanted to do another muscle biopsy to confirm the diagnosis. Health insurance issues played another part in this and we decided NOT to do it (for now) since knowing exactly what type of MD is not going to change treatment or management plans. My doctor respects this decision.
Health Insurance -- When we first moved, my husband was employed and we got a group plan through his company. The coverage was borderline horrible and we ended up paying a lot of "hidden" costs that they never told you about. After a year, my husband opted to go into business for himself and we had to get a individual plan (his company did not offer COBRA). With MD (and my other health issues), I was considered "uninsurable" but since I was coming off a group plan, they had to take me, but charged us an outrageous premium (my premiun alone was close to $1000 per month) and even with that, we had a $3000 deductible.
As of now, I have Medicare, but I opted to contract with an outside company to handle my Medicare plan. I'm worried, however, that they may try to drop me after paying for 70% of my powerchair last year and then my recent hospitalization and surgery last month. I want to be careful about using my coverage unless it's really necessary.
My neurologist has promised me to let me know when (and if) he believes further testing is needed and we'll go from there. He is the one that registered me with MDA and gave me a LGMD as a diagnosis.
Mark, your database sounds very informative and helpful. I appreciate your looking and seeing which LGMD seems to apply to me. I will definitely research this more myself and discuss it with my neurologist when I see him over the summer.
Thanks so much!!
Last edited by Madalot; 03-16-2008 at 06:29 AM.
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