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I wish I had MS!!!

Hello, its a long time since I have written a post on here... for the past year I have been suffering with lots of different symptoms which all point towards MS, but I have now had 2 MRI's and nothing to show!! I have an amazing Consultant who has been determined to find out what is wrong with me. After the MRI's he wanted to go through a series of tests just to eliminate everything possible. Now a few months on and after a muscle biopsy I have been diagnosed with mitochondrial myopathy. The main symptoms of mitochondrial myopathy are muscle weakness and wasting, and exercise intolerance.

I am absolutely gutted and can’t stop crying, there is no cure and the disease is quite progressive or far more so debilitating than MS..  it is also affecting my swallowing and I am starting to choke on my food. I keep thinking of how worried I was at the prospect of having MS and now I am wishing that I have it..

millie x

Oh Millie,

So sorry to hear your news, but at least you now have a dx, even though it's not the one you thought it would be.

I wish you all the very best.

Janet

x

Hi Millie xx just sending best wishes to you x((hugs)) xxx

xxjenxx

Oh Millie

So sorry and sad about that, i wish you all the very very best xx

 

nervous

Hi Millie

What a shock for you. Your emotions must feel like they've been completely up and down. I'm so sorry about your diagnosis. I guess it's a learning point for many of us not to latch our hopes onto one diagnosis even though thats quite difficult and sometimes the doctors aren't sure of whats happening either.

Hope you manage to get through this and get some support for your condition now you have a diagnosis.

Wishing you all the best

 

Reemz

X

So sorry Millie - that must have been a terrible shock letdown

Massive (((((HUGS))))) and very best wishes that you get all the help and support you need.

Thank you for telling us.

Karen x

So sorry to hear your dx Millie, is there a support group or a way talking through this with someone who knows what it’s like to be you?
Big hugs,
Chis x

Oh Millie, I'm so sorry for you. We all want a diagnosis, but that must be an even harder one.

As others have said, I do so hope there is a support group near you so that you can get advice and help, or even some counselling geared to your condition.

Feeling for you, and sending big Hugs too .....

Bren x

Hi Millie, I too feel so sorry for you, after getting such a worrying diagnosis.

I know exactly what you mean, when you say you wish you had MS.

I`m with you there, as my neuros keep changing their minds about my diagnosis.

They go between PPMS and HSP.

I don`t believe they are worse than what you have, but HSP carries a 50% chance of being passed down to my children.

Yes, I`d rather have MS too!

luv Pollx

Hi Millie

I’m so sorry about your dx. I hope you get the support and meds you need now that they know what is wrong with you.

Thinking of you,

Teresa xx

Millie, I'm sorry to hear about your diagnosis. That must have been a huge shock. I'm seeing a Professor in neurogenetics as they thought I had a hereditary neuro disorder. My daughter is also showing worrying symptoms and I'd rather have anything than her have anything wrong.

I've had permanant swallowing and chewing problems for a few years now. It's scarey and I can't keep up dietary intake. A peg tube was suggested but I refused.

Have you been referred to a speech/swallow therapist ? They can offer some useful tips. I always eat with a teaspoon and put less than half on it. Take sips of drinks between eating. Sometimes I do a double swallow to get food to go down. The swall therapist will be able to advise you on foods to eat.

Thinking of you

Jacqui x

Hi Jacqui, have you been given any possible tags for your problems? Just thinking mine, doesn`t include swallowing.eating difficulties. Sounds really horrible for you.

luv Pollx

Millie 

 i to im going through exactly the same thing 12yrs and three consultants have said ms my evokes were slowed but now after i went to a ms speacilist he said no , there is disease and its progressive i do agree with that but theres no lesion and one or two of your symptons don't match ms. Like you im in limbo i have no new referall so im worried i have disease that is wrecking my vision and muscle weakness and right and left side is also showing huge weakness and he left alone. I have been searching for help as my g.p as no idea what to do and my epilepsy consultant is so laid back i do check if asleep. I have swallowing issues that feel like my food is stuck and constant coughing, both hip have weak flexions and my memory is fog the worst is my vision i have no periphal vision and double vision most of time and is failing fast im at huddersfield tue opthamology and there doing there best but are also worried that neuro consultant is cluless and inexperienced and that most of my notes are missing i am so thrilled i have some one like me and it as gave some hope maybe they will name it. My biggest fear i have two kiddies both are nowing showing symptons vision and eating

 

HAZEYXX

Hi hazey, I see you and I live in the same neck of the woods.

My dx is all over the place and i`m asking for a referral to Dr Lily at Leeds. he is a specialist in MS, headaches and other neuro conditions.

I am so dissapointed by neuros in halifax. Had problems for 14 yrs now and no definite dx…just wishy washy ones!

luv Pollx

Have you asked for a referral to someone who specialises in hereditary disorders? It’s not good enough to be told what it’s not - you need to know what it is! If your PCT starts pulling the same tricks as before, then maybe your kids could be referred? Definitely best to find out what the hell is going on so you can all get the right treatment asap!

Karen x

Poll my Dad had optic neuritis in both eyes and milder gait problems… They were looking at some rare hereditary neuro disorders. Blood tests came back OK.

I haven’t been seen for 14 months and had to contact them. I’m now having a follow up in June. You know what’s it like when you’ve been trying to get the right diagnosis for years.

Jacqui x

Millie at Newcastle RVI they have a world leading neurogenetics dept. They see patients from all over the country. They also do a joint clinic with patients with vision and neuro problems. You are seen by a neuro opthalmologist and a neurologist.

With your kids showing problems you need to know what it is. Your GP can refer you to Newcastle to be assessed.

Jacqui x

Hi Jacqui, thanks for your support, I have now been referred to speech/swallow therapist. I do try and drink with my meal but sometimes I can even choke on water! its a nightmare…

Mitochondrial disease is hereditary and only passes through the mother, boys can have it but can’t pass it on.

Hope you too get sorted with a dx…

take care

millie x

[quote=“Baffled”]

Millie

i to im going through exactly the same thing 12yrs and three consultants have said ms my evokes were slowed but now after i went to a ms speacilist he said no , there is disease and its progressive i do agree with that but theres no lesion and one or two of your symptons don’t match ms. Like you im in limbo i have no new referall so im worried i have disease that is wrecking my vision and muscle weakness and right and left side is also showing huge weakness and he left alone. I have been searching for help as my g.p as no idea what to do and my epilepsy consultant is so laid back i do check if asleep. I have swallowing issues that feel like my food is stuck and constant coughing, both hip have weak flexions and my memory is fog the worst is my vision i have no periphal vision and double vision most of time and is failing fast im at huddersfield tue opthamology and there doing there best but are also worried that neuro consultant is cluless and inexperienced and that most of my notes are missing i am so thrilled i have some one like me and it as gave some hope maybe they will name it. My biggest fear i have two kiddies both are nowing showing symptons vision and eating

HAZEYXX

[/quote] Hi Hazey, I have had 2 MRI’s and nothing showed at all. I have eye problems, my periphal vision is rubbish and I get blured vision. My mother has Parkinsons and that’s why they queried a Mitochondrial disease, look it up, its interesting and the symptoms can be very similar to ms but with extra stuff going on too. The muscle biopsy is what makes the final diagnosis.

I hope you too get somewhere with your dx…

take care

Millie xx

Thank you everyone for your kind comments, they really do help me feel better. I haven't found any support groups yet but I will look into it, but at least I have this site or I think I would go mad..

XxMilliexX