Old 09-26-2012, 06:36 AM #46 (permalink)
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Default Re: Diagnosed with Benign MND

Wright

The terms slow progressing were used during my diagnosed. So much happened in that hour that I am just so confused. I also remember being told that if it usually starts off slow it remains that way.

Benign doesn't seem to measure up as a word but I have spoken with another patient under my neuro and a similar term was used to describe a slow onset and progression.

I am feeling really tired this morning, had a good night sleep but feel fatigued already am going to have a power nap and hopefully feel better.

Today is going to be my first tear free day. Have come close a few times, but I feel if I can get through one day, I can build on it the next and hopefully get my head into a better place.

I have requested my two EMG reports but i am not surw if they are going to release them or whether i wait until my next consult to discuss them with the neuro.

Here is to the rest of my day being positive.

Ian
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Old 09-27-2012, 10:03 AM #47 (permalink)
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Default Re: Diagnosed with Benign MND

Ian,
Your situation reminds me of what my husband has experianced over the past 5 or 6 months. His progression has been relatively slow and now we think it has been going on for at least a year. He has no functional limitations at this time but does tire easily. He first noticed atrophy but not weakness. He could tell he had lost strength in his arms primarily. He also has twitching. 4/5 on strength testing. After his EMG his nurologist thought he may have ALS but wanted to do a muscle biopsy to rule out anything else it could be. The biopsy results indicated Inclusion Body Myositis, which is a Myopathy (muscle problem). It is a slow, progressive, debilitating disorder with no cure. But it's better than ALS. I'm not suggesting that you may have IBM but you haven't mentioned a muscle biopsy, so if you haven't had one you mignt think about asking your physician if that would be appropriate for you. If my husband hadn't done that he may have been misdiagnosed with ALS. It's was a relatively painless procedure. We are waiting to be set up for our second opinion with a specialty clinic to confirm IBM. Best of luck to you!
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Old 09-28-2012, 07:40 AM #48 (permalink)
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Default Re: Diagnosed with Benign MND

Waiting

Thanks for the information. I am building a load of questions foe my neuro visit on 17 October.

I am in the process of accepting my diagnosed and am balancing being realistic with eternal hope.

My GP has told me I need to accept this and work with the neuro over the next 6 - 12 months to see how it is progressing. This gives me incredible hope and has reduced my initial concern that this would hit me all at once.

I am doing lots of research on this and am leaving the decisions to the professionals, but it doesn't stop me asking some difficult question for them.

I can accept that I have something wrong with my Motor Neurones and whilst most of these conditions are not pleasant, not all of them appear to reduce life expectancy.

I am having difficulty accepting that I have had cramping for over 20 months and visible twitching in several of my muscle Groups quite randomly for a good 14 months, yet whilst i feel fatigued, i have no clinical weakness.

As i said, i am not the professional on this but i am searching for answers, i guess like we all do.

I am booked for my next EMG the day before my neuro follow up. This is just so self consuming.

Warm regards and thanks for the ongoing support and encouragement.

Ian
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Old 09-29-2012, 11:33 AM #49 (permalink)
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Default Re: Diagnosed with Benign MND

Can't you FOI your results?
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Old 09-29-2012, 12:47 PM #50 (permalink)
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Default Re: Diagnosed with Benign MND

Rami

I spoke to the specialist yesterday that ordered the EMGs, (different from specialist treating me) she is Going to forward me copies of my EMG reports along with copies of some letters she has sent and received.

Alternatively, i could request a copy of my entire file or specific documents from my hospital records but they charge fees to do this and more to provide the copies.

Thanks for the suggestion on the FOI.

I have emailed wright and he is happy to look over my EMG reports.

None of this is going to change my DX but it will help me understand what they are looking at and to ask questions.

I am not sure about this muscle fatigue thing, i feel so drained but at least now i have my appetite back and am eating for Britain.

Ian
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Old 09-29-2012, 01:00 PM #51 (permalink)
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Default Re: Diagnosed with Benign MND

Rami
I have posted a reply but it is not showing up.

Not sure if I have done something wrong but it said something about being sent to a mod queue?

ANY suggestions?

Ian
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Old 09-29-2012, 01:36 PM #52 (permalink)
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Default Re: Diagnosed with Benign MND

It will show up sooner or later Ian. Not to worry!
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Old 09-29-2012, 10:08 PM #53 (permalink)
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Default Re: Diagnosed with Benign MND

I think I would definitely get another opinion....especially after reading all these replies and it seems understandable that you are confused. There is slowing moving motor neuron disease but not benign motor neuron disease. You need to have this doctor clarify this for you because it isn't clear to anyone one here that I've read so far. If you don't have muscle weakness or atrophy, perhaps the doctor is referring to Benign Fasciculation Syndrome. I think you need to demand an explanation about this especially since they have put you on riluzole.
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Old 09-30-2012, 10:37 AM #54 (permalink)
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Default Re: Diagnosed with Benign MND

Flip4it

Thanks for the advice. I am seeing my Neuro in mid October so have a question to ask regarding the use of the term benign.

She did mention BCFS as a possibility but believed in her heart of hearts it was some form of MND.

Clearly at the time my mind wasn't clear enough to ask what form (as I didn't even know there were different strains).

I have some abnormalities in my EMG and my neuro is a professor of neurology specialising in MND so I feel confident I am in good hands.

I was started on Riluzole as it is the only med and told that I will be closly monitored for the next 6-12 months to monitor any change in symptoms.

At the moment all i want to do is sleep, cry and hide my head from the world and my little girl.

Today has been a day of nausea, dizziness and feeling of weakness. All potentially the riluzole 2 weeks down.
I am up one day down the next. My muscles ache like I have been doing a gym workout, without barely moving.

I had a lovely day yesterday out and about, may have just overdone it.

I have my emg booked so hopefully, this will give invaluable advice on whether this is the correct diagnosis . It will either put my mind at rest once and for all or confirm the diagnosis and i will have to accept and adjust to a post diagnosed normal.

I have a post that is still not showing up, gone to mod queue I belive. I assume someone will review and release at some time.

Warm regards

Ian

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Old 10-15-2012, 03:36 AM #55 (permalink)
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Default Re: Diagnosed with Benign MND

Well this week is my nightmare week.

I am waiting at the hospital for a procedure by the ENT to check out my voice box due to acid reflux damage.

Tomorrow I have an EMG first up in the morning.

Wednesday is my first follow up with the neuro since diagnosis.

I had a lovely day yesterday as my wife took me to lunch for my birthday.

Today, I just feel so overwhelmed and emotional, I hate this roller coaster feeling.

Lets hope the EMG produces good news and i wake from this nightmare.

At least by Wednesday, i should have had some questions answered.

Thanks for reading. Helps to get it ofd my chest.

Ian

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Old 10-15-2012, 09:06 AM #56 (permalink)
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Default Re: Diagnosed with Benign MND

Thanks for the update, Ian. You're in our thoughts and prayers.

Wonderful that yesterday was a good one! Happy birthday!

The testing process can be daunting, just take it one small moment at a time.
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Old 10-15-2012, 09:09 AM #57 (permalink)
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Default Re: Diagnosed with Benign MND

Oh, about the Rilutek, I think some found relief by taking it with food and I believe one member reported that it was better after a few weeks.
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Old 10-15-2012, 12:14 PM #58 (permalink)
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Hey Ian, wishing you all the best this week.
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Old 10-15-2012, 03:38 PM #59 (permalink)
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Default Re: Diagnosed with Benign MND

Day one down. Have to stay in hospital but specialist very happy with procedure.

Bring on the emg tomorrow. I have my fight back.

It is amazing how the smile of my two year old daughter can inspire me to regroup and regain the fight.

Can't believe I am excited to be lining you for an EMG.

Neuro follow you Wednesday and I am praying for good news.

Thanks Luke and Deb for your comments.

Ian
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Old 10-16-2012, 04:56 AM #60 (permalink)
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Default Re: Diagnosed with Benign MND

Wishing you the best tomorrow, Ian. My thoughts will be with you.
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