JayneCT
1 post
Jul 01, 2009
3:27 PM
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Hi, I'm new to this, and it's my Dad that has the MG. To make things a little more difficult I live in the USA so I only get second or third hand news about my Dad. Anyway, here's his history highly condensed:
My 81 year old Dad was diagnosed 3 years ago, he had ptosis that was ignored for a while and his walking was getting progressively worse. His standard of care for the MG has been Prednisolone and Pyridostigmine.Apart from a terrible time when he was tried on Azathioprine (gave him diarrhoea then he went into defib due to dehydration)his dosage has been fairly stable at 15mg daily and 60mg qds respectiveley.
Everything was fine for a while, then about a month ago my Dad's walking started getting worse, and his energy levels seemed to be worsening too. His neurologist is terrible to get hold of, so his GP upped his steroid dose to 25mg. This seemed to make things worse, and he is now being slowly weaned back to 15mg. Currently his walking is very unsteady and his swallowing is starting to seem compromised too.
This is a long entry and I apologize, but here's my
question: Is this typical of what we can expect? I thought things would stabilize and remain constant.
My Dad is also on medication for diabetes, thromboses, cholesterol and osteoporosis. I have no idea whether these may interact badly with his MG meds.
Any help would be greatly appreciated, this disease is so frustrating!
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chairman
MGA Chairman
1134 posts
Jul 01, 2009
11:57 PM
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Jayne It is a fact that MG symptoms can fluctuate widely for no obvious reason - even in patients who have been on medication for years. It is unlikely that your GP could deal adequately with balancing your father's medications in view of his other problems. You should persevere and get your father an appointment with the neurologist. Increasing the steroids often causes an initial worsening of MG symptoms - but the neurologist would take that into account. Problems with swallowing make this an urgent problem.
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 Peter Finney
MGA Chairman
Last Edited on 1-Jul-2009 11:58 PM
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JayneCT
2 posts
Jul 02, 2009
1:45 PM
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Thanks Peter. My Dad went to his GP because his neurologist is terrible to get an appointment with. My father has told the neurologist's secretary of every change that has been made, without any reply or acknowledgement from his neurologist. Even a 'rushed' appointment arranged by his GP is 3 weeks out. Can this guy be that busy, or is he neglecting his patients?
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alice
401 posts
Jul 02, 2009
11:46 PM
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he is neglecting his patients, and being busy is not a good enough excuse. unforutunately some physicians don't treat elderly patients in the same way they would younger ones. there were quite a few times in which I had to intervene so that my elderly patients would recieve proper care, and be treated with respect despite their "age". and cholestrol medications can make MG worse, and also many times elderly patients are given doses that are much too high for them, not taking into account the physiological changes that occur with age, in metabolism and renal clearance of drugs. many times a good geriatrics physician can make a big difference in management. alice
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JayneCT
3 posts
Jul 03, 2009
5:27 AM
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Thanks Alvie, it's good to hear that someone outside the family thinks this guy is shirking his responsibilities; he keeps blaming the NHS for lack of staffing.I will definitely pursue the issue with the cholesterol medication. As of now my dad's swallowing seems OK again, but he is loosing muscle tone due to the fact he feels too tired and weak to do anything I think. Is physiotherapy of any help to patients with MG?
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JayneCT
4 posts
Jul 03, 2009
5:51 AM
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Oops, Alice, not Alvie!!!
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chairman
MGA Chairman
1135 posts
Jul 03, 2009
10:28 AM
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Jayne You wrote
"Is physiotherapy of any help to patients with MG? " The commonly held view is that it is bad for MG (but I just KNOW that someone will argue with that!). BUT - it might help you father for other problems - the physiotherapist needs to know about the MG and be careful.
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Peter Finney
MGA Chairman
Last Edited on 3-Jul-2009 10:28 AM
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JayneCT
6 posts
Jul 13, 2009
8:24 AM
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Just an update. My Dad saw the neurologist on Friday, and is going to gradually reduce his steroids down to 10mg over the next few weeks. He has also refered him to a geriatric specialist regarding his weight loss. Thanks Alice and Mr Chairman for your input and help.
Any advice about getting family members to understand how debilitating this disease can be?
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Levitas
995 posts
Jul 13, 2009
9:34 AM
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Jayne.
The MGA have a brand new Video "A Brief Medical Guide for Myasthenia Gravis".
It is narrated by Nick Ross and lasts just 6 minutes.
It is, I think, meant mainly for promotional (fund raising) purposes and doesn't go into too much detail but it does show patients affected by ocular and generalised MG and should be useful in illustrating some severe symptoms but stopping short of showing anything too distressing. (My opinion).
While it is not available on line your Branch should have a copy so you could contact the Chairman of your local Branch. If you have not yet joined a Branch you can find the nearest by visiting the main MGA website.I've just clicked on your profile, Jayne, and see you are in the USA but that your father lives in Wales.
Perhaps you could get some other family member to contact either South Wales Branch (Cardiff) or the Swansea Branch.
Alternatively I'm sure Rita would be able to help.
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Levitas
Last Edited on 13-Jul-2009 9:43 AM
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TinaM
138 posts
Jul 13, 2009
12:47 PM
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Hi Levitas There is a new video available on the website under "What's New", this does sound like the one you are referring to and I only noticed it a couple of days ago. Please let me know if there is another one as I would be interested to see it. The severity of some of the generalised symptoms on there certainly made me realise I am not so badly off. I'm just hoping that this isn't a taste of things to come considering my symptoms only started 6 months ago. I certainly think it should help with fundraising. ----------
Tina
Gloucestershire UK
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chairman
MGA Chairman
1140 posts
Jul 13, 2009
4:26 PM
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There are 2 different MGA videos available on line on the MGA website (look under 'Publications', and also on disc direct from the MGA HQ.
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Peter Finney
MGA Chairman
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Levitas
996 posts
Jul 14, 2009
12:08 AM
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Tina,
It just shows we should all check the "What's New" more frequently.
When I spoke to Max last, it must have been 2 or 3 weeks ago, he told me that the video had been sent to Branches and it would probably be some time before it would be available on line.
I didn't know it had been done so quickly!
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Levitas
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