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Helping hands

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Joined
Sep 9, 2014
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5
Reason
Lost a loved one
Country
Uk
State
England
City
Brighton
Hi everyone,

I grew up in the care of my aunty who I nursed through mnd 12 months ago, on my own. For the last few months I had been having worrying symptoms, ie legs felt weak, shaky and juddering muscles, excess saliva. My shoulders judder when lifting or rolling, as do ankles and when I bend over. I got referred to a neurologist who did a full exam, strength test etc and he said no symptoms of mnd but I had 'brisk reflexes'. He did not comment on the juddering and shaky muscles. He did not expand on the reflexes and I was too scared to ask any questions. I'm now panicking about brisk reflexes, is this anything I should worry about? Also, are juddering muscles anything I should worry about, I.e. Ask a second opinion? I'm so sorry to ask on here but I lurked on the forum for a while and gained a lot of support for my aunty from everyone here. I feel like maybe I am suffering from trauma but I just wanted some advice from people knowledgable and then perhaps I need some therapy? Thank you very much in advance, I am truly grateful for anyone who takes the time to read and respond, my life is in tatters at the moment.
 
> a neurologist who did a full exam [and] said no symptoms of mnd

Focus on that.

I really doubt you'll find anyone on this forum willing to second guess a Neuro...

I am assuming that as you'd a family history of mnd the Neuro you were referred to was knowledgeable.
If he/she wasn't, or if you doubt his/her abilities, ask for a 2nd opinion.
 
Hi helping hands,
it could well be a post traumatic response.

1 person in your family is not a family history of ALS. Have there been any others in your family?

I would ask questions of that neurologist. I know you are scared about the answers, but really we can't answer it, only the person who examined you. If your Aunt is the only family member, then your chances of developing ALS are as high as mine.

Please seek more medical advice so you can find the cause and address it.

Wishing you the best
 
Thank you. It's just my gp was surprised he said 'brisk reflexes' and then I started to really panic. Yes the neurologist knew family history. But then I worried as he didn't even comment on the shaking and juddering muscles, whether I should get a second opinion. He seems to be a well regarded neuro with a good cv, if that makes sense!
 
Hi Tillie,

Thanks for your reply. Sorry, I didn't realise that one person didn't count as family history, in my case there is only one person. I just didn't want to waste anyone's time as I have had a full appointment with the neuro and he said no symptoms of mnd but noted 'brisk reflexes' which my gp pointed out to me. I guess I was hoping for some advice whether anyone thought this warranted a second opinion or whether I would be taking an appointment away from someone who needed it (we all know how stretched services are)! Sorry, I hope that makes sense! I just wish I could stop worrying, I feel I'm reliving everything again and I know first hand what this disease means, which fills me with terror. I'm sorry for your loss, it is so hard isn't it?
 
Whenever you wonder if you should get a second opinion, I think you should get one... or address the issue with your current neuro.

Maybe they are just questions you are afraid of getting answered, but it is better to ask them than live with the anxiety of hearing the answers.

If you're not sure your current neuro is competent, then certainly get a second opinion.
 
Helping hands, hard doesn't even cover it, I well know.

We are also in a type of post traumatic stress, (god knows we went through an incredibly high stress!) and this could well be causing your symptoms. Doesn't mean they aren't real, just could mean there is a very different cause than the one you are worrying about.

If you really feel you can't ask more of the neuro you saw, then find an ALS clinic and get a second opinion so you can really get to the bottom of it.

I would certainly say that brisk reflexes on their own are not pointing to ALS/MND.

Please do get more help, as CALS we have been through enough without you having this plaguing you now.
 
Hello, Helping Hands.

It would appear you DON'T have ALS, but you certainly are frightened of it, and that is understandable.
Is the aunt in your bloodline? Either way, Tillie is correct to say that one person doesn't count as family history. We all have one person with ALS, but doesn't mean we're subject to it.

Two things:
First, if I thought I might have a fatal disease, I'd get a second opinion.
Second, neurologists are really, really smart. If he says there's no MND, then there's no MND.
Either you need a therapist to help you deal with this, or you need a neurologist's second opinion.
Good luck.
 
I agree with previous posters.

I would just like to add that brisk reflexes, especially symmetrical, is normal for many people. If you are anxious and under a lot of stress, reflexes can also be heightened temporarily. Your body produces to much cortisol during constant stress, and this affects your body in many ways.
 
Thank you everyone. I just received the letter from the neurologist and it says re reflexes,*could see no muscle wasting or fasciculations. Her knee jerks were a little brisk but there was no spread or clonus and her other limb reflexes were normal. *She had no spastic catch nor increased tone in her legs and plantars were down going. *Abdominal reflexes were intact and she had no crossed adductor response.

I feel confident in this not to go to another neuro, is this sensible? I have no one to ask really as I grew up in care and then with my aunt and can't talk to my friends. Thank you
 
That report sounds wonderful! NO ALS.

Please do see if you can get help with possible stress disorder. I know that I'm an emotional mess still, my body is behaving but I'm beating it up gardening like a maniac to relieve my emotional distress, so probably the work out is doing it good.
 
"I got referred to a neurologist who did a full exam, strength test etc and he said no symptoms of mnd but I had 'brisk reflexes'."

And now he has explained why he's not worried about the brisk reflexes. Sounds to me like your're good to get back to living.
 
Just wanted to say thank you everyone. I am going to get some therapy for my grief and anxiety and live my life to the full. I wish everyone the best, whether you are caring for loved ones, managing loss, like me, or have mnd yourself. Thank you again.
 
Good luck to you Helping hands. You sound like a very nice person and with a good counselor I think you are going to be just fine. So sorry you are having to go through all this. Take care, Kim
 
Good on your for coming to this decision Kim!

Now, you can stay a member here you know, and talk down in the past CALS section. That could help whilst you are sorting yourself out. You could even have good tips to offer other CALS who have questions about practical care giving issues.

Not pressuring, just sayin that for me it helps to use the experiences I had as a CALS to help others. Kind of part of my own healing process.

I truly wish you peace and that you find joy again. Even though I'm only in the first half of the first year, I know that grief and trauma we went through take a long time to 'get over'.
 
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