Diagnosed with BENIGN MND

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Diagnosed with BENIGN MND

Postby prattstar on September 17th, 2012, 3:44 pm

Hi folks,

I have been reading this board for sometime in an attempt to find an explanation for my symptoms and had found enormous comfort in the information I had read, that was until Monday 10/09 when I received a diagnosis of MND that turned my world upside down.

A history of my case.

March 2011 approx - I was getting cramps, calf muscles then thighs, biceps, and neck. Sometimes the pain could last for days.

In October/November 2011 approx - fasciculations started, quite random and not any specific area.

During august 2011 to December I lost about 18kgs of weight.

January 2012 - EMG "nerve and muscle tests haven't shown any specific problems with the muscles, but do suggest that at least sometime the nerves to your arms and the nerves from your neck and low back have been irritated".

Then came an MRI and some xrays.

The neuro then reported "MRI showed wear and tear changes. Nerve Conductive Studies revealed motor neurogenic abnormalities (increased duration of motor unit potentials with occasional fasciculations) in the upper and lower limbs in keeping with multilevel lumbar and cervical radiculopathy."

"Impression: I think his symptoms are a mixture of cervical and spinal radiculopathy, anxiety and cramping Fasciculation syndrome."

CT scans next all clear.

3 July 2012 Referred to another neuro with the following notes"no evidence of myopathic process on emg, CK levels 236 in December again normal late June.

PET scan, another MRI, breathing tests all normal.

Nerve conduction studies done on 9 July "have shown a mild deterioration since the previous studies done in January 2012".

Lumbar puncture and clinical assessment appears normal.

In summary
18 months since I first had an onset of cramps, 12 months since onset of fasciculations, clinical muscle tests 5/5 on 31 August and no evidence of muscle weakness.

The diagnosis I have been given is early onset benign motor neurons disease. I queried the benign element and was informed this is because other than fascics and cramping I don't appear to have any other symptoms. My neuro wants to monitor me for 6-12 months, revisit the emg and reassess my situation if there is no evidence of weakness develops.

So as you can see, it has been a challenging road travelled over the past few months.

My current neuro is a specialist in MND and in think under the circumstances I have accepted this diagnosis quite well.

I am interested whether anyone has any specific comments as I am holding out hope that I have no degeneration in the next 6-12 months and I can be reassessed.

Warm regards and sorry for the long post.

Ian
Last edited by prattstar on September 17th, 2012, 6:25 pm, edited 1 time in total.
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Re: Diagnosed with MND

Postby bobajojo on September 17th, 2012, 3:53 pm

Ian,
This is a very confusing post. Ive never heard of "Benign Motor Neuron Disease". Did your doctor tell you this or did you read it in on your last EMG/NCS? Can you tell us exactly what he/she said? You make no mention of fibs, or sharp waves, etc. Did you get another EMG in July? If so, can you type out what they wrote in their assessment?
-Matt
Last edited by bobajojo on November 2nd, 2012, 7:19 am, edited 1 time in total.
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Re: Diagnosed with MND

Postby prattstar on September 17th, 2012, 4:00 pm

Matt

Sorry for the confusion. I don't have the EMG results, the quotes included are from the letters the specialists wrote to me, my GP and to each other.

I don't understand a lot of it and don't have specific Details.

The diagnosis is what I was given. I specifically asked the neuro what my condition was called and was told it is early onset benign motor neurons disease.

It is only some days later that I asked about the benign element and was informed because I don't have any other symptoms at this stage but clearly there is something on one/more of my tests that supports this diagnosis.

I am guessing I could ask for the EMG report, would that help?

Warm regards

Ian
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Re: Diagnosed with MND

Postby lrbrown1 on September 17th, 2012, 4:06 pm

I am very confused by your post as well and it actually actually scares me since I have been twitching since this past March. So what MND disease is your doctor pointing towards?
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Re: Diagnosed with MND

Postby bobajojo on September 17th, 2012, 4:09 pm

OK, I have personally never heard of benign motor neuron disease, but I just googled it and found this study. Here is the abstract:

Two patients had a delayed syndrome of benign fasciculation after complete recovery from paralytic poliomyelitis and a third had the syndrome after an attack of purely motor myelitis. Myalgia was prominent in all three, and two had frequent cramps. Denervation hypertrophy occurred in two. The patients were observed for at least three years, and no new weakness was seen. These cases suggest that some chronic diseases of motor neurons may be benign.

So, I think the key word right now is "benign". I think you might want to ask more questions to find out exactly what they think this is. Just my 2 cents.

-Matt
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Re: Diagnosed with MND

Postby wjjw on September 17th, 2012, 4:11 pm

prattstar wrote:I am guessing I could ask for the EMG report, would that help?

It would probably help you to understand what is going on, but it will not enable anyone here to provide you with any insight. As Matt says, this is a completely confusing and self-contradicting thing to be told by a specialist. You really need to ask these questions of the specialists who are making these statements.

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Diagnosed with MND

Postby prattstar on September 17th, 2012, 4:15 pm

Maybe this wasn't a good idea.

I don't know what strain of MND. Here in the UK it is called MND.

In the US I believe it has a number of different names.

I was simply told by the Neuro that it is early days but my tests results support the diagnosis.

Other than that I known very little. Until Monday of last week I knew very little about the disease, since then I have been told I have it, it is progressive and there is no cure.

So I am really sorry for my confusing post and that I can't answer specific questions, because I simply don't know. I am trying to make sense of this myself.

Seems I now have some more questions for my neuro.

Ian
Last edited by prattstar on September 17th, 2012, 4:34 pm, edited 1 time in total.
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Re: Diagnosed with MND

Postby lrbrown1 on September 17th, 2012, 4:16 pm

Ok Matt, you are going to have to reassure me today. After reading the previous post I have suddenly gone into panic mode. I have been twitching for 6 months, more in my right foot than anywhere else. It did spread all over however it has drastically subsided but when I do twitch it is in my right foot. My body will jerk, just a little, occassionally, nothing to horrible though. I have also had some hotspots and I have experienced tingling sensations. Went to neuro, only had a clinical examine, diagnosed BFS. No muscle weakness. Do I need to be concerned? Also, if I were to be part of the rare group that twitched before an MND diagnoses how long would you have to twitch to notice muscle weakness?
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Re: Diagnosed with MND

Postby raindog on September 17th, 2012, 4:38 pm

Ian 3 months ago i took the printed out PDF File to my neuro called Fasciculation-cramp syndrome preceding anterior horn cell disease: an intermediate syndrome?
Mamede de Carvalho, MD1; Michael Swash, MD FRCP FRCPath1,2

My Neuro said i am more or less identical to this case and i would hazzard a good guess that you are the same. I have chronic denervation , neurogenic changes long duration MUPs Fasciculations etc every thing you have mentioned i have had written on my EMG reports I have also since lost all deep tendon reflexes at knee and ankle. I have not had any real motor strength loss of my muscles for over 6 years and so still remain with what my neuro calls a benign lower motor neurone syndrome disorder.

Hope i can give you some hope that its not all doom and gloom as i still get on with my life and still play a gentle sport to a competitive level and my condition has remained pretty stable in the 6+ years since onset.

ATB
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Re: Diagnosed with MND

Postby prattstar on September 17th, 2012, 4:46 pm

ATB

Thanks for your post. Your videos are remarkably similar to mine.

You give me comfort.

Can I search for the PDF you refer to or can you email it to me.

Sounds fascinating and could make for interesting discussions at my next clinic day.

Ian
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Re: Diagnosed with MND

Postby raindog on September 17th, 2012, 4:52 pm

prattstar wrote:ATB

Thanks for your post. Your videos are remarkably similar to mine.

You give me comfort.

Can I search for the PDF you refer to or can you email it to me.

Sounds fascinating and could make for interesting discussions at my next clinic day.

Ian


Drop me a PM with your email address and i'll send it as an attachment if you want to speak as your in the UK I'll give you my phone number too.
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Re: Diagnosed with MND

Postby anxious06 on September 17th, 2012, 5:04 pm

18 kg in 4 months??? Wow!
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Re: Diagnosed with MND

Postby raindog on September 17th, 2012, 5:18 pm

Ive sent you a PM Ian.
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Re: Diagnosed with MND

Postby prattstar on September 17th, 2012, 6:12 pm

I edited this post, deleted the previous...Gary



My condition is benign in the sense there is no muscle weakness.

Clearly the Neuro doesn't share your educated view, i have been prescribed riluzole which is the only approved drug for MND to delay the onset of further symptoms for as long as possible. I wouldn't have thought they would do that if they thought it would always remain benign.

I don't have a lot to gain by scaring anyone. I'm looking for answers not conflict.

I have enough to deal with without responses like this.

Ian
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Re: Diagnosed with MND

Postby jpbw on September 17th, 2012, 6:15 pm

my only point is dude, that you were diagnosed, according to your words "benign MND," your subject title clearly portrays a different view.
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Re: Diagnosed with MND

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