April 7, 2019 at 8:24 am #176927Need help and information
So my story short I won’t bother with too much information. I’m 31 I have brother with DMD at least what they think it is he is 27 chair bound I want to do new tests because the symptoms doesn’t match .So if someone give me information from where to start this journey would be nice unfortunately or fortunately I have to do this battle for him because my father was taken by cancer and he was just 57 . My mother have asthma due to the stress we had to endure. My brother is incredible intelligent but he is like a kid he doesn’t yet grasp the idea how this world work and that nothing comes if you don’t fight first he is like waiting for miracle and we all know they tend not to happen but still I won’t let the story like this so I know there is people in worse situation than me, but still if you have any advices I more than happy to read them … I’m just another guy that keeps the fight going I understand the pain of most of you I used to carry my brother from school and back this is how poor and strong at the same time person can be thanksApril 7, 2019 at 11:53 am #176928Reply To: Need help and information
Hello and welcome Foggy. I am so sorry to hear about your dad, I have been there myself and it is not a good place. You have not said what tests have been done to your brother to establish the diagnosis, but you do seem unhappy with the outcome. I must stress at this point that although many of us have MD labels, mine is FHSD for example, we are all unique with our own set of symptoms. There may well be some commonality between those within the same MD group, so please do not expect that your brother will have excatly the same symptoms as you may read about.
That being said I do believe the best course of action is to arrange with your GP for him to be referred back to a neurologist, perhaps a different one, and see if you can get a second opinion. Without doubt it is the neurologist who can give you the answers you seek. Do please let us know how you go on.
So many love songs, so little love.April 8, 2019 at 9:22 am #176932Reply To: Need help and information
Ty Mike um what to say the rest were done 20 years ago , so I’m in the fog my self now the medicine and technology advanced so I will definitely check what’s happening as much as I know is Duchenne type erb whatever that supposed to mean.I read about the symptoms like you mentioned and I want and I will do some tests. I heard about drugs that are now available for people with this condition do you have any information how good they are and what’s the rate of improvement. If I manage to improve he’s condition to be more self independent because in current condition my mother doesn’t work to take care of him and believe me the system in my country is not the same as here so I’m stuck in this poetic situation I can’t stop working to support I’m sure you can relate and most of you out there will understand. I want to make him more independent if possible ty and sorry for my English I’m foreignerApril 8, 2019 at 11:51 am #176933Reply To: Need help and information
Twenty years is a long time, so it really does suggest that he should have a review. Once again I really would suggest you take advice from your neurologist on medications. There are so many interactions that need to be taken into account so it really does need a all round approach to treatment. Others with Duchenne who have tried these meds may be able to comment more than I, you will need to wait for them to pop up.
PS Do not worry about your English. I am sure its much better than my grasp of your language, and I am still trying to understand english as well!
So many love songs, so little love.April 8, 2019 at 8:14 pm #176955Reply To: Need help and information
So update to my adventure I ask the Gp in my country for an information or help on the subject he refused not only he refused he said there is no information or can give any light or help on the subject so the government is out of the question.But someone wrote me and gave me information about some organisation that works there in this domain. So this will be my next step if not this I go private clinics etc.So yes this is for now guys and I want to thanks Mike and Beth! For the help and support for now And will be grateful if someone is using this new therapy’s or medication and shed some light how they work and on whom and so on thanks againJuly 9, 2019 at 10:10 am #179433Reply To: Need help and information
So guys as I promised I won’t stop fighting till I figure out what’s happening. So I booked a genetic test for my brother and now after 27 years the test for now is showing negative for all kinds of MD … there is one more test left to be 100% sure . But this is mixed feelings news because the doctors were saying MD 100% now is unclear what is happening.Idk what sort of illness can mimic MD but I will try my best to reach the bottom of this story. One advice never trust a doctor at least check all your options… keep the fight going guys and thank to all that’s helping I keep in touch with more info this story start to look like a Steven King novel.July 9, 2019 at 12:44 pm #179435Reply To: Need help and information
Please do trust your doctor. I have worked on the diagnostic side for over thirty years and I can vouch for the fact that true diagnoses for many illnesses are often hard to come by. For instance a broken leg is easy to see on an x-ray, but how was it caused? If the patient was dizzy then fell over and broke the leg then what is the illness that caused the broken leg then? Dizziness or vertigo (two different conditions) can be caused by so many different things from drinking too much to brain tumours. You see where I am going with this. Your average GP will not have the time or the skills to go through all these possibilities, thats why there are specialists. But then again which specialist should they go to?
Both my father and brother were refused specialist testing by the GP as in both cases their GP was certain that they did not have FHSD like me despite not ever having heard of it before.
One thing you must do in the ‘novel’, is to keep battling on, keep asking questions, keep pushing for more knowledge, and when going to visit medical people have a clear goal at the end of it what you want to achieve.
So many love songs, so little love.
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