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Old 11-12-2010, 05:47 PM   #1 (permalink)
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Default Spontaneous remission

Hi,

I have had MND since Jan 2008, diagnosed May 2010. I have had MRI scans, CT scans, 2 spinal taps. Docs gave original diagnosed as PLS but now with ALS. I am psuedo-bulbar, all limbs affected with severe emotional labiety, but am of sound mind.

I have told my doctors over the past 2 years that I have seen incremental improvements in my worst affected parts however they do dismiss my assertions as misunderstandings on my part. However I would say that they have missed the details in past clinics. My overall presentation has declined over the past 12 months but is stabilising and I hope for the improvements to shine through over the next two years.

Tests have shown my lungs have strengthened and over the past 2 weeks my voice-box is tightening and voice projection is improving.

A more detailed account is on the UK MND forum, 'I am with you'.

I am curious if anyone else had noticed any slight improvements?

Regards

Graham

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Old 11-12-2010, 05:55 PM   #2 (permalink)
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Default Re: Spontaneous remission

If you are improving you received an improper diagnosis. There are a few diseases that mimic ALS symptoms but they are treatable and not terminal.

We are very happy for you that you have seen some improvement. Let us know if it continues.
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Old 11-12-2010, 06:27 PM   #3 (permalink)
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Default Re: Spontaneous remission

Hi Joel,

Reputable UK consultants have give me this diagnosis and tell me they can't offer an alternative. I have not taken any medication although I have been offered Riluzole. Your response has been in my mind. Could you offer any MND mimics? I have emotionally induced spasticity and atrophy.

Best wishes

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Old 11-12-2010, 06:51 PM   #4 (permalink)
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Default Re: Spontaneous remission

Graham you can use the search feature on this forum with the phrase "diseases mimicking ALS"and come up with a list such as MMN, Monomelic Amyotrophy, Polymyositis, CIDP (motor variants), Lyme Disease etc. Best of luck with continued improvement, but can you get yet another specialist involved for another opinion?
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Old 11-12-2010, 06:58 PM   #5 (permalink)
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Default Re: Spontaneous remission

Read through the definitions I have on my website. There might be something there that fits.

Definitions
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Old 11-12-2010, 07:02 PM   #6 (permalink)
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Default Re: Spontaneous remission

Hi Laurel,

So far four consultants in North-West England have seen me. I have signed up with research, so this should take me elsewhere. I am hoping my voice will continue to improve when my current consultants will have to sit up and take note.

I will definitely look into the mimickers. Thank you.

Had a stormy day over this side of the pond today.

Take care

Graham
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Old 11-12-2010, 07:04 PM   #7 (permalink)
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Default Re: Spontaneous remission

Joel I somehow missed that part of your website. It is so helpful and so well done. I am impressed! You are a special guy.
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Old 11-12-2010, 07:07 PM   #8 (permalink)
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Default Re: Spontaneous remission

Thank you Laurel. I have tried keep it a simple site that was easy to navigate. I have resisted the urge to be creative with it. I am always looking for input on what to add.
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Old 11-13-2010, 01:21 AM   #9 (permalink)
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Default Re: Spontaneous remission

It would be great if you had something better... I surely hope so!

I know I have experienced some functional ups and downs with my larynx, even as my upper motor neurons decay. I started out as extremely spastic, and that made swallowing and speech more difficult to manage very quickly. Then as the progression continued, some of that spasticity settled down and was replaced by weakness. On the whole, spasticity is a much better sign than weakness, but for my larynx moderate weakness actually produces a more usable (although not projectable) voice. My swallow took a step downward with that weakness, but now I only need a speech device when I strain the strength I've got. I'm getting better at not straining, and putting up with not getting my point heard/across.

But I hope what you are experiencing is real getting better!
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Old 11-13-2010, 01:25 PM   #10 (permalink)
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Default Re: Spontaneous remission

Hi Guys,

Thank you for your replies. You have provided some excellent information for me to absorb.

There is a pattern in the remission:
1. Atrophy
2. Cramps in the flexor muscle normally at the end of sleep, pains in extenders during the day.
3. Stiffness through to restored function.

Given that there are over 600 muscle groups, if I'm 100 down or 300, I wouldn't really know.

I will keep in touch with progress, good or not.

Regards

Graham
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Old 11-14-2010, 11:18 AM   #11 (permalink)
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Cool Re: Spontaneous remission

Hi Guys,

MMN looks suspicious. I recently took Clarithromycin and experienced 3 weeks of no fog in the brain.

I am having an auto-immune blood test.

Joel, your site is cool.

Take care all.

Regards

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Old 11-14-2010, 11:25 AM   #12 (permalink)
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Default Re: Spontaneous remission

Graham,

WOW! Keep searching - you will find the answer. It sounds like whatever you have will be treatable, too! Best of luck to you! Our prayers are with you!
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Old 11-14-2010, 06:56 PM   #13 (permalink)
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Default Re: Spontaneous remission

Hi Miss,

Our companionship is our strength against MND. Thank you for your kind thoughts. As I read where people are from, I take a flight of imagination into their locality. Quite exhilerating!

Hi All,

Looking into MMN, I see this condition is predominantly lower motor neuron. My MRI scans also revealed high signal change in the upper motors too. Hence spasticity and emotional labiety.

Best wishes all

Graham
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Old 11-16-2010, 03:05 PM   #14 (permalink)
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Default Re: Spontaneous remission

Hi Laurel,

I have investigated polymyositis and found the following symptoms check out:

MND-like
Difficulty getting out of chair, walking up stairs (atrophy of hip and thigh flexors)
Difficulty lifting arms above head (atrophy of shoulders)
Lung weakness
Difficulty swallowing
Slurred speech
Fatigue
Leg cramps
Onset of symptoms in hands

Not MND-like
Muscle degeneration/regeneration
Low level fever
Brain fog - responds to Clarithromycin anti-biotics
Red rash over knuckles
Nodules over knuckles
Chest rash
Night sweats
Pains in thigh muscles
Thickening/calcification of skin
Tired eyes

Other
Heavily oily skin


Laurel, have you out-performed my medical wizards? We shall see...


Best wishes

Graham
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Old 11-16-2010, 05:58 PM   #15 (permalink)
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Default Re: Spontaneous remission

I met a fellow in medical daycare a couple of years ago while hubby was getting his IVIG for CIDP, and he told me about his struggle to get a diagnosis which in the end of was polymyositis. He surfed the web and came up with polymyositis as a diagnosis and took the info. to his doctor. She rolled her eyes but did more testing and that is what he had. He said he was in sad shape and had given up hope. When I met him he was getting IVIG and was back to work. I hope that this may be an answer for you!
Laurel

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