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Steve100

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I've been looking around various sites and a few people have suggested that Lyme disease or thyroid disorders, amongst other things, could cause symptoms that may be mistaken for MND. My mother has had thyroid problems, arthritis , sciatica, and recently, slight hair loss. Do these point to another disease, or are they irrelevant?
 

Steve100

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She has a lot of pain too, which is the doctor said is not a symptom of MND. Presumably that could be the weakness in the muscles making her arthritis worse?
 

Jamiet

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You are correct, you should have her tested for lyme at IGENEX, with the 6050 test. also, you need to get her to a major acedemic center, to rule out all other potential issues.

rgds,

jamie
 

Steve100

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What's the 6050 test?
 

Steve100

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Any help is greatly appreciated :)
 

Steve100

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Anybody have any ideas about this?:cry:
 

Al

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The 6050 test is one of the Lymme tests I believe. I have no idea about your mom's other symptoms but I don't think they generally would point to MND.
AL.
 

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Jamiet

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You can get the test off of IGENEX's website. You will see some people say all they do is give positive test, but that's BS, alot of people, including my first one and PB's test here were negative.

There is much controversy about it, i by far don't sell it, but it's something that you have to surely eliminate. I tested positive on two of six test, does that mean i have it, well, we're not sure, but my lyme doctor said the only way to really know, is treat it and then we'll know. So far, no major improvements, so it's not looking good. but my friend i talk abou tbelow, it took two years for him staying the same, then all of a sudden..bam started making weird improvements.

I am personnally and just this morning spoke with a buddy of mine, "Derek", he was diagnosed with ALS three years ago, bad EMG, weakness, clonus, noodle tongue you name it all the ALS stuff. Just today, he said it's a good week this week. he's slowly starting to walk around again, he's making very very very very minor improvements that most people don't notice, but he really does. he's in PT and can do much more than he did a year ago. This is not possible with ALS. This is not a BS story, it's real, i'm real, AL and them here know me. These "true" stories are few and far between, so it's a very long shot.

Now, does this mean your mom has it, by no way, it's just an option.

You need to get her to a major acedemic center for testing, but consider all options, including lyme, MS, ALS and all other neuro issues. Don't center just on ALS.

rgds,

jamie
 

Bluenadski

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2nd diagnosed

I've been looking around various sites and a few people have suggested that Lyme disease or thyroid disorders, amongst other things, could cause symptoms that may be mistaken for MND. My mother has had thyroid problems, arthritis , sciatica, and recently, slight hair loss. Do these point to another disease, or are they irrelevant?

Hi Steve,

your note makes me wanto get my mother tested by an als specialist asap!
The diagnosed may be true or not - but I want to make absolutely sure!
People in uk dont seem to want a second diagnosed like I do - in fact consultants in Scotland seem to take personal offence should you wish you PAL to visit an MND specialist!
I want to know her actual diagnosed - like most in UK all that is disclosed is that the patient has mnd....
That is few and far between - since my mother suffer from bulbar onset that cuts her lifespan to 6 months!
My major concern is that she had flu like symptoms in April and began developing slurred speech - but since she visited her GP 5 mths after developing symptoms and being admitted to a neuro ward - she was diagnosed with mnd after 5 days!
I thought it took at LEAST 2 weeks to discover Lyme in a patients bloodwork?


What worries me is since starting Riluzole - OVERNIGHT - my mothers voice worsened and became more slurred than normal. She is distraught as she is an extremely vocal person - and also noticed this shift. In her other tests it proved she was 'abnormally' healthy for a female of her age..... why then the ony option after 6 days being mnd?

Very confused!

How can doctors know so SOON that this is the diagnosed...
This instance - according to natural science- beggars belief due to the swift diagnosed......

I can see through symptoms why docs think mnd - but i can also see other things like PLA, hypoglossal palsy - due to the fact she has a totally clean emg served by a tech - not a consultant - plus she is feeking acute pain from her tongue to the back of her throat - which she has done since she felt a 'ping' whilst verbally arguing with a delinquent work collegue.

I have since managed to fix a second opinion with an ALS specialist...
at least then if it turns out to be the worst - at least we know the prognosis! Before - the statement mnd - left us utterly in limbo!

Hope all is well with you mother - so much struggle it seems to have them seen by specialists in this field!
Do your best. I'm just hoping the CNST has misdiagnosed - missing something structural which could be amiss. I know I sound slightly dissalusioned - but this is purely as my mother doesnt fully grasp the entirety of the situation! She is asking me day to day - bit by bit what this diagnosed holds for her!
Its heartbreaking watching her realise the scale of this illness! I wish t werent me who was giving her the news - but sine the consultant isnt being forthcoming - I feel its my duty.:|
 

Steve100

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Hi all - thanks for your advice - Ive been all over the net looking for alternatives to MND. Some are more likely than others but it should give the Neurologist something to think about. I tried a search on hypoglossal palsy but they all came up as error 404 for some reason:confused:.

I suspected that my mother may have MND but the worse bit was seeing how upset she was when it was confirmed. She knows it's fatal (in most instances) but I'm not sure what else she knows. We'll all have to cling on to hope thats all. It can be tough, I know.

We don't have a specific diagnosis yet either, though I think it's limb onset. Her arthritis makes it more difficult to be sure.

Somebody from the MND society is visiting this week so maybe she'll give some advice on any local specialists. Take care all and best of luck to your mother Bluenadski.
 
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