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Muscular Dystrophy Message Board
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Old 10-23-2010, 02:18 AM   #1
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Advise needed for very worrying symptoms. advise gratefully wanted.

My name is Thomas

I am a male, 19 years old who has been suffering from a large range of symptoms for about 4 months. If you can have the patience to read my post and offer me advise I would be very great-full.
I have written a summery for anyone who just wants a general idea of my problem, but i have written in detail my situation for anyone who feels they wish to read my story further.

Apology in advance for the messy post, I have become rather inarticulate and slow recently.
**summery**

male, 19 years of age, diagnosed with spastic diplegia (cerebral palsey)
grandad and cousin have beckers muscular dystrophy
for 4 months have gone from relative healthiness and normality to multipe fast progressing symptoms of muscle weakness, joint pain and instability, tendon pain and weakness, problems with memory and the feeling of lessened intelligence, wit and ability, all over body pain. My muscles feel very soft and i can move my muscles and tendons around my body a lot as they are rather loose. i have also been suffering from spasms, cramps and involuntary movements in my toes.

I am very scared as my health and wellbeing has declined rapidly in only 4 months. i have a brain scan in a few weeks as my neaurologist beleaves i may have muscular dystrophy, but my follow-up apointment for my results isnt until January. Diagnosis has been very slow even though the deterioration of my health hasn't.

I am currently suffering on no medication and have not been diagnosed with anything related to my reicent illness.

I have no one to talk to about this and my friends and family dont understand the effects it is having on my life. I am unable to work,( it takes me 3 days to recover from a walk to the shops and back ) and as i am undiagnosed am not entitled to any benefit what so ever, so i am living on hand outs from family and as my condition gets worse i have to rely more and more on people who don't even truely understand how difficult my life is at the moment, i almost feel guilty for being ill.

I am very worried that by the time i am diagnosed properly i will be a lot worse than i am now, as i am at the moment, i find it hard to imagine how much healthier i was even 4 months ago.

If anyone could give me advise on any aspects of this i would be very great-full, i am alone in this and cannot talk to my grandad or cousin about they're illness'.

If you can relate to my situation in any way please feel free to talk to me about it.

I have read up a lot about different muscular-skeletal illnesses and i feel my health has deteriorated very rapidly compared to a lot of accounts i have read of others in similar situations.

Thank you very much for your time.

DETAILED EXPLANATION

I will give you some insight into my past medical history to help you understand my situation, and how i was before i began to get ill.

When i was a child i had walking problems, i was unable to walk until about 18 months old and was diagnosed with spastic diplegia. I have lived my life normally as my mother was told i may have troubles physical and mentally but was never fully aware of my illness due to communication error. I was'nt the most athletic at school but i did enjoy sports and was physicly able.

when i was 17 i tore my anterior crutiate ligament and had operations to repair cartilage in december 08 and an acl reconstruction in april 09.

my recovery was ok, i was very lazy and only did physio therepy for 3 months after. even though i had become rather unfit and overweight at this time, i felt healthy and apart from some soreness and stiffness from time to time, i could live an every day normal life, i hadn't tried any sports although i could spend a whole day out shopping and even went camping for 5 days, which included walking atleast a mile a day, 3 months after my second operation with only some soreness for a few days after the trip.

at the end of june this year, I began to get soreness and lumps in my joints, beginning with my repaired knee, but soon spread to both my knees. this started after a day of being very tired and having soreness and aches all over my body.
I saw a doctor who sent me for a blood test for arthritis and related disorders, the tests were negative. Soft tissue around my knees began to disappear and my knees became unstable and weak. this began to spread throughout my entire body. After a month my muscles all over my body were weaker. sometimes i would wake up unable to move my neck for 3 or 4 days, and twice my lower back became stiff and i was unable to sit up for a few days without use of my arms.

as my illness progressed I began to get lumps on my tendons all over my body, my joints became weak and painful to move. all the main joints in my body now click and crunch when i use them, and if i over extend something it will feel weak and painful, my joint will not return to its normal position quickly when i relax and feels as if there is a delay between my brain telling my muscles to relax and them actually relaxing. My fingers will bend sideways at the joints if i carry a heavy bag, and the tendons in my body are very sore, and almost feel like they burn.

as time progressed even further i have developed multiple symptoms such as:
muscle atrophy,
weakness in all muscles,
hazy memory and constant tiredness.
some emotional instability and sometimes depression.
my knees now hyper extend,
stiffness in the mornings,
the need for atleast 10 hours sleep to have any normal amounts of energy, constant pain in sholders and kneck.
Inability to lift anything remotely heavy or assert any moderate to large amounts of energy without pain or injury.
twitching and cramping in muscles.
problems swallowing and gagging when I touch certain parts of the outside of my throat.
disrupted sleep and grogginess when i awaken.

Thank you for reading, feel free to ask any questions i am more than happy to elaborate or discuss anything.

 
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Old 10-26-2010, 10:00 AM   #2
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NP74 HB UserNP74 HB UserNP74 HB User
Re: Advise needed for very worrying symptoms. advise gratefully wanted.

Thomas,

I can't really give you any advise, as you mentioned yourself, MD usually does not progress that fast. You may, however, keep calling your neurologist's office until they let you get an appointment before January. January is just way to far away. Do you have a family Dr that might be able to advocate for you? You may have mentioned that in your post, but my little brain has been kind of scrambled lately!

I am sorry I can't do more for you.

P

 
Old 04-20-2011, 08:36 AM   #3
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Re: Advise needed for very worrying symptoms. advise gratefully wanted.

Hi Thomas,
Did the doctors ever give you a diagnosis? How are you doing since your last post?

 
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