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Post by asiewert on Jul 6, 2011 19:25:56 GMT
[glow=red,2,300][/glow] I was diagnosed with TAM 5 years ago. My major symptoms have been severe muscular pain, fasiculations, muscle wasting, and significant mobility difficulty. During the past few months, I also had significant vision difficulties (blurred vision, 'sparkling' areas,
pronounced problems reading, and such difficulties make it almost always impossible to drive a vehicle). ... I am curious to learn if other persons diagnosed with TAM have experienced vision problems, and what those problems have been.
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Post by Pete2 on Jul 9, 2011 13:57:25 GMT
Hi Al
I have had TAM for maybe 15 years and do not have visual symptoms that I would ascribe to TAM. The usual need for glasses for reading, of course plus odd bright images very rarely, say once or twice a year. These are as if I have been staring at a light globe too long. As I say, there is nothing to connect these with TAM.
However, in the literature there are reliable reports of visual effects that some folk get that are due to TAM. I will get back to you with the references.
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Post by Pete2 on Jul 18, 2011 0:29:43 GMT
Does TAM have any effect on vision? Yes, according to a handful of articles in the medical literature, but it is not common. Naturally many TAM folk have declining vision, particularly with age, and other visual defects, but the question is whether this is due to TAM. Effects that may possibly be associated with TAM are in 3 categories:
1. retinal degeneration, including gyrate atrophy of the choroid and retina,
2. muscle effects and
3. abnormal pupils.
To put this into perspective, many of these folk may not have TAM as we know it. Few of category 1 patients have the limb muscle symptoms that we have. Those in category 2 included folk with TAs but possibly not TAM and a very odd case with skeletal deformities. So far I have found only one report of one family in category 3.
The detail of this is a bit lengthy for this forum, so I will have a look at putting it on my web site and let you have a link.
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Post by Pete2 on Jul 28, 2011 7:37:40 GMT
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Post by Craig Lane on Mar 13, 2012 20:02:57 GMT
I think I was an abnormal pupil but more recently I had deteriating vision which may or may not be associated with TAM. Had a second Electroretinogram today and await the results. Even though the previous test was only 4 or 5 years ago the equipment had changed dramatically. 3 hours of flashing lights electrodes and the like. Great fun. NOT. Seemed funny how gently the technician was removing the sticky bits. I don't think she realized they could have stapled them on I wouldn't hurt any more. Still nice to be treated with some care for a change.
Now have to get someone to look this over as I can see what the spiders I'm typing.
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Post by georger on Apr 11, 2012 23:22:06 GMT
Hi Craig
Sounds horrendous. If it was a punishment, it would be illegal. What was the outcome? Obviously there's a lot more to TAM than the existing medical literature, so we could learn something here.
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Post by Craig Lane on May 15, 2013 8:35:38 GMT
Unsurprisingly I never received a result so from that I can only conclude that I either have nothing wrong or I'm dead. Either way nothing to worry about unless they want to repeat the exercise.
I have since had a opticians eye test and deemed to need glasses to read and other to see with. Part of the test was to press a button when a tiny spot of light blips on a screen but, you are not allowed to move your eye to hunt for them. They asked me to come back and repeat the test as I didn't see enough of them!!!
I suppose I will just have to keep retaking the test till I pass whether I see the required number of dots or not. Go figure.
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Post by georger on May 17, 2013 1:44:10 GMT
Much as I'm a fan of some zombie movies, I really hope you haven't joined the living dead. I haven't had the spot of light test but it would indicate the extent of your field of vision. Do you find that your peripheral vision is down?
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Post by Craig Lane on May 17, 2013 21:11:28 GMT
I find all my vision down a bit. Focus time extended. I think I must be fitted with digital eyes as digital sensors seem to have the same issue, blurring on movement or maybe I am Zombie. I get the peripheral vision test, what I don't get is having to repeat it coz I failed to see enough dots. Surely that just tells them that my peripheral vision is not up to scratch. Also that my hands don't work so well, so I'm not always sure if I pressed the damn button or pressed it twice. In the word of our ill informed "What-ever".
I will go and chat to them to ind out what it's all about when I get five minutes to be entertained.
I'm off now time for dinner some brains me thinks, on toast.
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Post by georger on May 22, 2013 0:08:49 GMT
My eye tests are of the low tech kind, "Read the chart" and "Look straight ahead and say when you can see my finger." So I'm a bit shocked that you've had fancy tests with no feedback. The link to TAM and vision does not work now for some reason, but is linked to from here: www.tubularaggregatemyopathy.info/Do your doctors know to look for those abnormalities that rarely may be associated with TAM? |
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Post by georger on Sept 4, 2013 2:36:58 GMT
I've just had my eyes checked, including a retinal scan. Nothing at all TAM related. I took the list of possibles to make sure that nothing was overlooked. Just the usual age related loss corrected by new glasses plus small early cataracts.
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Post by Roy (UK) on Jul 28, 2014 8:38:25 GMT
I used to get a lot of migraines when I was younger but these gradually fizzled out when I got into my 40's
Since being diagnosed with TAM, 4 years ago, about once a fortnight I get the starter symptoms of half vision followed by the fireworks (lasting about an hour) but no headache afterwards. Weird, but I'm happy not to get the headaches.
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