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Stiffgirl

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firstly, thank you so much to anyone who takes the time to read this. I sincerely hope I could be as selfless if I end up with an MND diagnosis. I can only imagine what you are going through.

I have read the stickies. I am 37 and female.

I am seeing the neurologist tomorrow evening. I have had clean blood tests done. I had an MRI three years ago which was clear and a nerve conduction test on my left leg as I had numbness and tingling in my left foot and nothing was found. It still comes and goes but I have learnt not to think about it.

Two months or so ago I noticed some pain in my right back/shoulder and a tight feeling in my hand which I chalked up to rsi or something similar. Then at the beginning of Dec I started getting fasciculations in both calves, I didn’t think much about it as I know these are common. Then they started to get more painful, like gentle spasms which come and go, more in my left leg but in both legs. Then my hand started to feel even tighter and I’ve started to get more pain in my shoulder, back, bicep, hand and inside of my elbow. My thumb will not reach across my hand like it used to. I get twitching now in both biceps forearms and back of shoulders. Sometimes I get a very violent twitch in my right shoulder. It feels like my hand is seizing up similar to someone who has arthritis. If I straighten my right arm and slowly drop my hand it jumps all over the place. No astrophy I can see. No loss of function, just gripping harder/more painful.

I know that pain is not typically a sign of MND which I do have in my arm back etc. The leg cramping is there a lot and I had a bicep cramp in the night that woke me up, first I’d had.

As I said, I am seeing the neurologist tomorrow and I would be lying if I said I wasn’t scared. I have a 4 and 5 year old to think about.

Can I ask, will the neurologist be able to tell me quickly whether this could be MND or will this be a long drawn out process?

Many thanks
 
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Sorry but it will probably take a year or maybe two, that is how long my diagnosis took. Also a neurologist and then sent to an ALS neurologist then sent to a second ALS specialist for a second opinion.
Al
 
Thank you for taking the time to respond Al. I am praying it is nothing as no doubt you all were. I’m so sorry you have such a horrendous disease.
 
My husband diagnostic process was about 2 months. So I think it depends. That said though, nothing you describe sounds like als symptoms. Cramping is not a part of the diagnostics. You do not have any loss of function. ALS is failing not feeling.
 
Thank you Codyclan. I’m sure you are right. It’s the progression from twitching to twitching and cramping that is bothering me, and the increasing frequency of cramping with the twitches.
I’m so sorry that your husband has been diagnosed with ALS.
 
My PALS was diagnosed within weeks. She looked fine to me, but had tripped and knew that there had to be a reason that muscle didn't work. So she went straight to the expert, who ran a bunch of tests quickly, and it all went quickly. So when she was diagnosed with ALS, she hadn't yet shown any symptoms that I could see.
 
Thank you Mike, I really hope my neurologist will be able to diagnose me quickly with whatever is causing these weird symptoms. I’m sorry to hear your story.
 
I was diagnosed with ALS on Nov at Mayo.... I started seeing 1st of 5 Neurologists in June Had 4 MRIs, EMG, Nerve Conduction test, Blood test etc. Mayo did diagnosis in 12 hours!
 
So sorry to hear that Romeosc, how horrible to get that diagnosis. 12 hrs is so quick, I’ve heard Mayo is very good, we don’t have Mayo in Uk.
 
It's getting to be late evening in England, now, so I'll give you some words that you didn't ask for. You only asked how long the dx process takes. Here's a more complete answer.

I'll be really damned surprised if you have ALS. Reading all you wrote, I really think the neurologist will laugh you out of the office if you mention ALS.

I'm not a doctor, so it would be irresponsible of me to guess over the internet what you might have. But honestly, everything you've written is more compatible with stress, plain and simple. What has changed in your life? What changes are coming down the road? New love? New job? New school? Bad boss?

Don't limit yourself to neurology. Nutrition and hydration can do that stuff to you.

Usually, we tell people not to mention ALS to the doc--let the doc go in the direction they think they should without being led down an alley you suggest. But, however, conversely, you seem so worried about ALS, that I might say go ahead, walk in the door and say "Do I have ALS?" and let him/her respond. I rather suspect that he'll say no, and then you can get over that massive worry fest you've got going on now.

Go to bed. I see no reason to think your kids are in jeopardy of losing you.
 
Thanks Mike. You talk a lot of sense, I do probably need to hear that and yes I have some stress in my life as my youngest has a form of cerebral palsy and I worry sick about her, probably too much. I have no doubt Googled too much which I imagine is what most people posting to this section have also done. I’m so sorry as I know people on this site have real issues. I wish I could do something to help.
Thanks again for talking some sense into me.
 
I take from an earlier post that you're single. Two tiny kids. CP? You have a really stressful life, I think. Good luck.
 
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