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Avatar universal

Possible ms and symptoms

I was misdiagnosed with fibromyalgia nearly 4 years ago. But it's now come to light that I may have either a type of muscular dystrophy or muscle myopathy. Dr at genetics has done a blood test for the dystrophin gene. But ms has never ever been ruled out. I spoke to my GP last week who has agreed to speak to a neurologist to see if they will give me an MRI.
I'm going back to my GP tomorrow because I don't think she quite grapes how bad my symptoms are so I've written a list of them.
Here they are
Pain - especially in leg
Muscle spasms
Muscle cramps
Numbness in lots of places but particularly behind my ear (right side)also numbness and tingling on the right side of my face
Stumbling and poor blanace
Eye pain, last year my vision went very hazy and one eye felt like it has a film over it, optician found nothing and it went away after 3 days
Hand closes if I've been gripping something and I have I pull my fingers apart
Need to urinate but it can take up to 15 minutes before I actual pee
Dizziness and lightheaded
Felling of swell unused my chin
Forgetting words and sentences (I even stop mid sentence while talking to my partner) and forgot what I'm talking about
Losing simple words like table
I often have a blank expression
Chin twitches, I also twitch a lot in my sleep
I have low seizure threshold
Numb toes
I wake up with a burning leg inside but it's not hot to touch
Weakness in arms and legs
Heaviness in my body like I'm trusgy through snow
0
poor mobility
Have often felt like my face is dropping but it's not
Palpitations and missed beats. Waiting for results of echocardiogram
Getting a 24 he ECG in May
Sometimes I feel like I'm outside of my body
And I'm very aware of my legs carrying me
Have had to crawl around or flat because I'm not stable enough in my feet
Extreme fatigue, I have a nearly 5 year old but if my partner is at home I nap at least 3 times a day but then struggle to sleep at night
Eye twitching
Tingling and slight loss of right side of body

There's a couple more. But my eyes are closing.
Maybe if I take this bits of paper into my GP tomorrow she  will see the extent of how bad things area
.
I know I need an MRI. I've had a funny turn tonight and want to be admitted to hospital  But I'm not sure that will happen.
I'm fed up now and need to know what is going on

I wondering if others have similar symptoms and have you been diagnosed

Sorry about typos. Struggling to type
Thanks in advance helen
5 Responses
Avatar universal
I should also add that I was seen at genetics in Aberdeen on March the 15th. The consultant took a blood test for the dystrophin gene and is looking at types of muscular dystrophy and muscle myopathy. This blood test takes 3 months to come back.
So as you can imagine not knowing what is wrong with me is driving me crazy. And getting a diagnosis is crucial to getting help and support.
I've already got some AIDS from the OT's

I'd really appreciate if anyone could reply because I'm driving myself crazy.
I feel my symptoms fit more with ms than MD or muscle myopathyZ
The consultant at genetics has talked about me seeing a neurologist once the results come back and possibly having a muscle biopsy. But that could be months and months away.
So I'll go to my GP armed with my list of symptoms and fingers crossed that pushes things along quicker.'
987762 tn?1331027953
COMMUNITY LEADER
Hi Helen and welcome,

Unfortunately, there are a lot of medical conditions that have a lot of the same or similar symptoms associated with MS, but i'm actually stumped on how someone of your age and symptoms could end up seeing a geneticist before you've even seen a neurologist or had an MRI.....

For MS to be on your list of possible causes, you'd need to have some neurologically abnormal clinical signs that corroborate some of your symptoms being suggestive or consistent of a neurological condition like MS, MS suggestive-consistent brain and or spinal MRI's, and or any additional diagnostic evidence eg LP, VEP etc suggestive or consistent with MS.

With out any relevant testing, neurological conditions like MS wouldn't even get on your potential causes list, so if you haven't seen a neurologist yet i honestly think that should be your next step and whilst it's easier said than done, please try not to worry too much, it's quite possible that what's causing you all these issues will not end up being muscular dystrophy, muscle myopathy or MS, so please try to remain open minded until you have some of the diagnostic evidence that you need .  

Hope that helps.........JJ
Avatar universal
Thanks supermum
My GP has referred me to a neurologist today regarding MS. Which is great. The bad news is there's an 18 week waiting list.

The main reason muscular dystrophy and muscle myopathy is being looking into is because an enzyme the leaks out of wasting muscle into the blood has been higher than average in my body since October 2014. So there is definitely muscle wastage somewhere they just don't know where yet.
I do believe I have either of these 3. And even my GP is now leaning more towards MS. Although that doesn't ex plane the raised Ck levels (not the ck levels in the kidneys the ck levels which seep out of the muscle.
So it's a case of waiting now.
Avatar universal
There's no doubt that I am very, very unwell and that it's bit fibromyalgia X
Avatar universal
I meant it's not fibro
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