April 15, 2019 at 8:42 pm #177143DM1 person saying hello
I’m 34 years old and I was diagnosed about 4 years ago. I have Myotonic Dystrophy type 1 (DM1).
I have a few symptoms, such as my hands get stuck without notice when I’m doing something with them, and my tongue too. Additionally, I don’t have strength in my fingertips. It’s hard for me to press on some sprays. I have spasms, mainly in my arms. Sometimes I have pain in my upper back. More recently, I’ve had pain on the external side of my upper legs and calves.
Does anyone have these symptoms, or similar?
I moved to the UK about 1 year ago, and I live in Hertfordshire (to the north of London). I am still finding out how the health system works here, regarding my disease.
I will have my first appointment with a neurologist here this week. I found him on the National Hospital for Neurology and Neurosurgery in London, which seems to specialize in neuromuscular diseases. I will be seeing him privately for now, through a clinic.
I am also looking for a cardiologist that knows this disease. Does anyone have any recommendations?
Thank you for your help
AnaApril 16, 2019 at 12:36 pm #177153Reply To: DM1 person saying hello
Hello and welcome to the forum Ana. I am sure someone will be along soon to try and give you some advice. Clearly you are taking the best first step by seeing a neurologist.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015April 17, 2019 at 9:57 pm #177199Reply To: DM1 person saying hello
Hi Ana. Seems like we are in a similar situation as I am also in my thirties with muscular dystrophy type 1 but my diagnosis was a bit more recent – only about 6 weeks ago. My main symptom is difficulty relaxing grip but I’m also struggling with a lot of tiredness & have had gut symptoms for years & it’s difficult to pick apart would is & what isn’t myotonic dystrophy. The fact that I’m a GP doesn’t help although you may think it would be an advantage!
Seeing a specialist is a great place to start (especially a consultant from the national hospital for neurology & neurosurgery) & I’m sure they can refer you privately to a specialist cardiologist that can screen your heart appropriately.
Alternatively you could ask your GP to refer you to the myotonic dystrophy clinic at the national hospital for neurology & neurosurgery at Queens Square on the NHS. I have an upcoming appointment there soon but have been told by the private consultant that I saw who set up the clinic that as well as having neurologists they have sub-specialists (e.g. cardiologists) that work specifically with people with muscle wasting conditions.
Just a thought.
I’m no expert but let me know if you have other questions.
GenevieveApril 25, 2019 at 9:25 pm #177290Reply To: DM1 person saying hello
Thank you for your quick answer and the nice welcome. My appointment with the neurologist was good and he referred me to several specialists. I also did some exams for my heart.
I’m glad that other people with my disease have answered me.
Ana FilipaApril 25, 2019 at 10:08 pm #177291Reply To: DM1 person saying hello
I’m happy that you answered me. I went to the neurologist last Thursday and I am very happy with him. He will make a report to my GP to ask her to send me to an NHS genetic clinic for IVF (because I want to have children) and also ask her to do a referral for the national hospital for neurology & neurosurgery, so he can accompany me there.
I moved to England about a year ago and this is my first appointment with a neurologist here. Before my appointment, I wrote down all my symptoms, my family history (my dad had the same disease), and several questions to ask. I find that having the questions written down helps me make sure that I don’t forget to ask anything important. You might want to do something similar for your appointment.
I’m very happy because the neurologist said that my disease is a mild form. It won’t get better of course, but he thinks it won’t get much worse.
I asked him to refer me to several specialists: cardiologist, pulmonologist, ophthalmologist and physiotherapy, to which he agreed. I already did my cardiologist exams: an echocardiogram, an ECG and a 24h Holter ECG. Now I need to schedule the appointments and clear it with the medical insurance.
You probably have a lot of doubts about this disease. I ordered a book that helped me so much to understand my symptoms and what can happen. It’s free from the Myotonic Dystrophy Foundation in the USA. You can order it from their website: https://www.myotonic.org/get-mdf-toolkit (they also have more resources at https://www.myotonic.org/resources/toolkits-guidelines). This toolkit has one large book with many medical details and another smaller book with some summarized facts. It also has a medical alert card.
I have this alert card from the US MDF and another one with more details that I ordered from the Muscular Dystrophy UK association. I also bought a SOS bracelet, you can find these in jewellery stores. They also make versions in necklaces. If you prefer to order, here is a link: https://www.fhinds.co.uk/jewellery/jewellery-by-brand/sos-talisman
The bracelet I bought has a problem. I can’t put it on by myself because the clasp is small and I don’t have enough dexterity and strength to use it. Fortunately my husband puts it on me when I ask him.
All my friends know that I have this disease and I have no problems talking about it, because as much as I can remember I always had symptoms, so it’s normal for me. I don’t know much about the logistics and paperwork here in the UK, but if you have any questions about living with the disease please let me know!
Ana FilipaApril 28, 2019 at 4:05 pm #177316Reply To: DM1 person saying hello
Thanks for sending those links – really useful. The muscular dystrophy foundation website has so many videos and I am the sort of person that feels like knowledge is power so I”m sure I have many hours of watching ahead of me! Also great to know that there is a lot of information that I can pass onto family & friends as although a lot of my friends are doctors (I am a GP) those that aren’t find it a difficult condition to understand.
Most of my friends know about what’s going on now but as I only found out my diagnosis relatively recently and my friends are spread all over (mostly in the UK but some in other countries) I haven’t told everyone yet. My friends, family and work are very supportive which makes a big difference.
I was thinking about buying an SOS bracelet too but I think I want to have my heart checked first in case there is anything related to my heart that I might need to have on it (for example I know a lot of people with DM1 need pacemakers or defibrillators)
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