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arkallen

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Mar 8, 2009
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268
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Diagnosis
05/2009
Country
AU
State
VIC
City
Wodonga
Yesterday the MND Association contacted me to formally state that I am no longer a client; a change brought on by the lone voice of a Neurologist who I saw three months ago who claims my difficulties are all in my mind. This fellow has spoken personally to my team of therapists, who I feel are no longer responsive to my situation. He has made two other phone calls, and written three different letters that I know of, and states that my condition is “not progressive”. Meanwhile I’ve begun to use a BiLevel breathing machine to sleep; can no longer get through more than about half of dinner (1/3 chewing problems, 1/3 swallowing, 1/3 the sheer difficulty of lifting the food up from the plate!), I’ve turned my voice amplifier up to full volume most of each day; and I’ve finally cancelled my daily 20 metre walk because it’s just too darned hard!

Yesterday I also saw my own Neurologist for a 7th EMG study, which was normal once again. He gives no credit at all to the “functional” theory, but isn’t at all surprised that the label sticks so well once it has been applied. His advice: probably PLS, wait for the next development, come back in six months, and find a new team of therapists who haven’t been contacted by the troublesome doctor.

I get the feeling reading on the Forum that I’m far from the only person who finds the journey to a confirmed diagnosis a difficult one, fraught with uncertainty and angst.

(I’d hate any of the doctors or therapists to read this, as I still appreciate each of them and am grateful for their assistance, even though it’s gone a little off track).

Well; that’s my grumble for the day...
 
Re: Indulging in a Grumble....

Roderick
I hear your grumblings. All I can say is I'm sorry and I'll keep you in my prayers. God bless.
 
Re: Indulging in a Grumble....

hi roderick . . I can imagine the frustration must be infuriating . . I would never wish your kind of conditions on anyone but if they could only expirence what challenges you face . . Then they would surly change there minds . .if there is a plus side mate . -Well a clean emg can only be a good thing. . Hang on in there my friend. . God bless . . Alex
 
Re: Indulging in a Grumble....

I am sorry for the turn of events. I can't imagine how frustrating it is for you. I got my diagnosis very quickly so did not have to experience what you are going through. I pray for you my friend!
 
Re: Indulging in a Grumble....

PLS is a real booger to diagnose. I suppose one reason is that it's all in the head (upper motor neuron location) and usually only confirmed upon autopsy. The signs and symptoms that are associated with PLS are progressive weakness, stiffness, cramping, hyperreflexia, Babinksi and or Hoffman signs and balance issues (just naming a few). With PLS, you could also develop psuedo-bulbar palsy. To me, your condition would fit the bill for a diagnosis of PLS. It's just a matter of finding a doctor that is familiar enough with it to recognize it and brave enough to give it the label once recognized.

My latest neurologist had to look it up on Dr. Google and was misreading the information to me during a recent appointment. English is not his first language. (big sigh here...)

Roderick, you seem to be in a tough place. I'm hoping that someone will intervene on your behalf and pursue the PLS avenue with you.
 
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Re: Indulging in a Grumble....

Roderick,

Yikes, I am sorry. That is such a lame thing to say, but knowing just a tad of what you have been through, it is crazy making. You aren't crazy; they are, however, pushing you toward that all by themselves. Praying, dear Roderick...
Ann
 
Re: Indulging in a Grumble....

Dear Roderick.
I am so sorry. I think your therapists do need to read it. You have done nothing but speak kindly about them, but maybe they could get an insight into what you are going through. I cannot believe how vindictive the neruologist has been. Your normal neurologist should be the voice that is being listened to, as he knows you.
I do not understand why the MND association should actually care about what the diagnosed is. You have all the problems the same, whatever the cause (and I bet its PLS). I have told my field worker that I realy dont know whats going with on me, and that the Dr thinks at present PLS can be the only possible. They dont care that it may or may not be PLS. I have the same issues, and they are really supportive.
Vent away, sometimes its all we can do.

Praying for you
Aly
 
Re: Indulging in a Grumble....

Thank you all for your wisdom and friendly words! I do appreciate the gift of companions on the pathway. Two days on from that frustrating day I feel like I am back in the race again.

Here's a question: My usual respiratory doctor was unavailable last month, and I saw a locum instead. He happens to work in the Neurological clinic in Sydney where I have previously seen a professor (about 14 months ago). He strongly reccomended I should see him again immediatley; however the local Neuro just as strongly advised me not to go chasing yet another opinion. He says there won't be anything concrete for him to comment on, and I should just wait and see. I had confidence in this professor, and I am inclined to go. But I can also see how it might be unhelpful to keep going from doctor to doctor.

Any thoughts?
 
Re: Indulging in a Grumble....

Roderick, this is simply my thought, based on your first post, as well as the good experience you had with the respiratory doc you mention. I would go and see the professor. My reasoning is this: right now you're being refused help by the MND Assoc., whereas you did receive support from both the Respiratory Doctor and the Professor. They seem to have a better grasp of your condition.

Glad you feel more steady after letting your thoughts out. It can be very helpful... I know you're praying about what to do, and I join you in prayer for wisdom.

Ann
 
Re: Indulging in a Grumble....

My opinion for what it's worth, is to follow your local neurologists advice and stay put with him. I sought a few opinions because I had increasing symptoms with no real signs. It came back to slap me in the face. I looked like a neurotic patient. They begin to take you less seriously as time goes by. I found a supportive neurologist, who examined me with fresh eyes, suggested pls, gave me baclofen, and a supportive shoulder.
The quest for an answer to what it might be is debilitating, emotionally and physically.

Roderick the problem with PLS is that apart from umn signs, which in themselves can be subjective, there is nothing else for the drs to grab hold of. You may go back to Sydney and all the wounds you are trying to heal, after having your self esteem nuked by the last Dr, will be opened up again.

Stay with the man that is backing you. You need to deal with the progression, as you are already. Get your Dr to write to the mnd association on your behalf and undo the wrong that has been dealt to you.

I am not a beautifully poetic writer like you Roderick, so sorry. Give up your quest for answers for a while. It's hard, but at least you can rest.
 
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Re: Indulging in a Grumble....

Aly and Ann;
Perfectly put arguments for both sides of the question! Aly, the professor in question is the same one, M.K. that you had suggested some while ago. Nonetheless, today I'm more inclined to leave things alone. It's a familiar question of assertiveness vs. faith, and sometimes its quite hard to know the season for each. Thank you both for expressing an opinion though.

Blessings!
R.
 
I just can't believe you've had 7 EMGs that were clean. If I'd had even one clean EMG I would be bouncing down the street volunteering at every ALS clinic I could find. Give it up! Be happpy. Put your lyrical writing skiills to better use.
 
I just can't believe you've had 7 EMGs that were clean. If I'd had even one clean EMG I would be bouncing down the street volunteering at every ALS clinic I could find. Give it up! Be happpy. Put your lyrical writing skiills to better use.

Now, if only it were that simple!
 
Re: Indulging in a Grumble....

My opinion for what it's worth, is to follow your local neurologists advice and stay put with him. I sought a few opinions because I had increasing symptoms with no real signs. It came back to slap me in the face. I looked like a neurotic patient. They begin to take you less seriously as time goes by. I found a supportive neurologist, who examined me with fresh eyes, suggested pls, gave me baclofen, and a supportive shoulder.
The quest for an answer to what it might be is debilitating, emotionally and physically.

Roderick the problem with PLS is that apart from umn signs, which in themselves can be subjective, there is nothing else for the drs to grab hold of. You may go back to Sydney and all the wounds you are trying to heal, after having your self esteem nuked by the last Dr, will be opened up again.

Stay with the man that is backing you. You need to deal with the progression, as you are already. Get your Dr to write to the mnd association on your behalf and undo the wrong that has been dealt to you.

I am not a beautifully poetic writer like you Roderick, so sorry. Give up your quest for answers for a while. It's hard, but at least you can rest.

Aly,

This piece of advice you offered was good. I've been growing in appreciation of what you said over the last week or so, and just came here to re-read it once again and I think you're so right. Without needing to go back through all that you said, you really came up with good wisdom on many points. Thanks for that! It's a bit of a first for me - asking for advice on-line. It's also a bit of a first in the couple of years of this progression because advice of any sort seems to have been elusive! Again, thank you indeed.

KBO!
 
Just because someones EMG is clean, doesnt mean that there isnt something going on. He is still progressing. He is still losing function. Just because they havent named it yet, doesnt mean it doesnt exist. Sort of an ignorant post.
 
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