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prattstar

Active member
Joined
Sep 19, 2012
Messages
50
Reason
PALS
Diagnosis
09/2012
Country
UK
State
South Yorkshire
City
Barnsley UK
Hi folks

I am not sure if I am in right area or even the right forum. I am quite reluctant to post after what started as a rather unpleasant exchange on another forum about fasciculations.

I received a diagnosis of early onset benign motor neurons disease on September 10.

I live in the UK and our terminology seems to be a little different to the US.

I am just so emotional, confused and distraught with my diagnosis and am just trying to understand where I am, what I have and what it all means.

I have been flamed for using the benign diagnosed but that is what I was told by a specialist in MND, I didn't understand what this really means (other than evidence to support diagnosed but not currently active and the words not agressive and slowly moving were used). I have been started on Riluzole.

I have been having muscle cramps for well over 18 months, in calf, thighs, neck, biceps, pretty much any muscle, I can make cramp pretty easily.

I have also been having increased fasciculations pretty much anywhere and everywhere.

I have had MRI, CT and PET scans all pretty clear.

I have had two EMGs over 7 months that shows some abnormalities and some minor deterioration between the two) I don't have the reports but was informed about this by the Rheumatologist ).

I've had a mountain of blood tests and lumbar puncture with nothing to note.

I have full muscle strength in all muscle groups 5/5. I feel I have a little loss of dexterity but this is incredibly minor and I put it down to age and am not sure if I am imagining it.

I feel fatigued, my muscles have a dull ache from time to time.

I have lost over 20kgs in a short time but had a pretty stressful and active life, also now have a complete loss of appetite and have to force myself to eat.

My Neuro believes in her "heart of hearts" that her diagnosed is correct and said that the tests (?) support the diagnosed

I was told that whilst my diagnosis is currently benign, it is progressive and has no cure.

I am going to be monitored closely and the neuro has indicated if there are no further symptoms than she is happy to review the diagnosed.

Another EMG is being booked.

I am about to see my GP to request and discuss my neuro report and hopefully my EMGs so that I can ask questions and become informed.

As you would appreciate, this has really turned our world upside down, I have the most beautiful and caring wife of 3 years (friends for 20 years) and we have the most gorgeous 2 year old daughter.

I am really sorry about a long winded post, I am one confused and emotional individual trying to make sense of all of this stuff that makes very little sense to me at this moment.

Warm regards and best wishes

Ian
 
Not sure if it is relevant but I am an active 42 year old.

Ian
 
Ian,

I am sorry for your experiences. I do not understand your diagnoses - (others may) but I do suggest that you to leave a message on Wright's Visitor page. If you have perused other threads, you may have seen that he is the resident guru of all things EMG.

Wishing you strength.
 
I'm with Ms. Pie. One that I've not heard of. Could there possibly be a tran slation error on "be nign"? Until you meet with your GP, please try to deal with stress. Loss of appetite and weight is not ben eficial to your heal th. There are me di cines that your GP can pre scribe to help with the stress. If it is determined to be ALS/MND, you have come to the right place.
 
Also; as O Girl mentioned, if you could get copies of your EMG's and post to Wright, he can explain the results to you. And please remember, there IS life after dia gno sis!
 
I do not understand your diagnosis, you lose weight, you have cramps, muscle strength 5/5!? Benign MND ...?.... hmm .... seek a second opinion.

Good luck,

Nikola
 
Hi folks, thanks for your comments.

There is definately no translation error, the word benign was used and I have checked it with them at least twice since.

I think they are using the benign tag as it is atypical of a normal diagnosed because I have many of the signs of mnd but have no muscle weakness. I really don't know.

Saw GP, he has not received my consultants report outlining diagnosed but has specially requested it be faxed to him tomorrow and he will call me to discuss.

He is as puzzled as I am. There is clearly something not right but I may not fit into a specific category at this moment - that is my interpretation anyway.

I will await a phone call and start compiling my questions for my next neuro clinic in a month.

I am going to request my medical records from the hospital, problem is I have been to two hospitals so haveto request and pay for both.

Warm regards and thanks again.

I will update when I have something a bit more concrete.

Ian
 
CJ, I don't think that's the one but I do remember someone getting that dia gno sis a few years back. He said he has cra mps in many mu scles, where that affects one limb. Also; the on set is off by many years, although I know there could be variables. He did mention fa scic u la tions and being bashed at another for um. I was thinking be nign cra mp fa scic u lations, but you wouldn't be given Ri lu tek. Then I thought PLS, that would be where the be nign would come in. But the EMG's were bad. I wonder if anyone has had a dirty EMG but yet di ag nosed with PLS. I guess we are as confused as he is.
 
CJ, great timing on the link. Scar on another thre ad has been diag nosed with this di sease.
 
His qge really puts him at the far edge of the specrtrum not saying your old or anything, just in relation to most of the other people with this disorder. Also if something is benign it tends Nt to progress or effect other parts so to speak.
 
The diagnosis you present is confusing, perhaps if you share the prognosis we might better understand your concern.
 
Joe,

I am sorry if I haven't been clear, it is because I am trying to understand this myself and I am completely sick to the core with worry and stress.

The specialist used the term benign when she was explaining my condition to me. It hasn't been used by anyone since, nor is Antoine in my care team fully conversant with what it means.

I have just received a copy of my diagnosis letter today and it says "the neurophysiological assessment does not show absolutely conclusive changes yet, but there are neurogenic abnormalities and unfortunately, I think that this patient (Name) does have Motor Neurones Disease."

I am on Riluzole and I will be followed up for another clinical assessment in 3 weeks.

I don't know what the neurogenic abnormalities are and I don't know what it all means.

My fasiculations have gone mad, I feel like I am twitching all over, I don't have an appetite, I am sick with worry and I feel completely lost in a world I don't understand.

I think there are some positives in the diagnosed but I know there is something wrong inside my body. I just want some clarity and that may not come for sometime.

Thanks for your support

Ian
 
I don't think MND is ever benign. It can be progressing slowly, it can be affecting only UMN or LMN, but benign?

All of them I'm aware of are progressive, which isn't how I'd define benign.

If you've lost no strength, it sounds like there must be no LMN issues. We have a saying around here...it can only be ALS when it can't be anything else, which means all other things such as neuropathies, MS, CODP and a whole host of other things are ruled out.

There is benign fasciculation sy Crome, which means no damage is being done. In MND, damage IS being done, thus it's not benign.

Have you considered a second opinion?

I got a similar letter to yours, but there are still things to rule out.

That bit was the entire letter?

What sent you to be seen? The fasciculations? What's your age?
 
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