How to get MND without really trying

[Mottom]

A further update on my condition. My neurologist put 4 needles in my legs yesterday. One at a time they were connected to a machine. Pulled them out then bluntly told me to go and enjoy what little time I have left. Nothing more he could do for me. Dont make another appointment as you will dead. Thanks for coming. Didnt really make my day go well at all. A bit heartless of him, even if I already guessed the outcome of the tests. I wonder if any other people have had the same sort of terse statements in regards to their health.

 

[Zaphoon]

Holy Cow! What a heartless doc! He'd surely be marked off my Christmas Card List! The guy sounds like a virtual pig! They let guys like this practice medicine in Australia?

 

[Doris Little]

I cannot believe what I am hearing. My Specialist Dr, Bower from Melbourne Australia who visits Tasmanian patients regularily is absolutely wonderful and so very compassionate. I think you should request to see him. If you want more information please ring me on 03 9598 0979 or 0411 423333 or email me [email protected]

 

[Doris Little]

My Melbourne Neurologist is absolutely wonderfull and full of compassion. If you would like his details please let me know. I think you need to change Neurologist. I am also heading on Monday to the Bethelem Hospital to see another Nerurologist, Physcio, and Occupational Therapist. Has none of this been offered to you> Are you a member of the MND Association? There is a good one in Melbourne. I would love to give you help in all of this.

 

[Al]

Man, I've heard of the Tasmanian Devil. They must have been talking about this jerk.

AL.

 

[rose]

Mottom, I think you win, hands down, the "worst treatment by a neuro" award. How awful for you and your family!

 

[BethU]

Mottom ... jerks like that aren't confined to down under. My 3rd neuro diagnosed me with myasthenia gravis (with no tests to back it up) because, he said "If it was ALS, you'd be six feet under by now." That was 2 years after the symptoms started. Then I met neuro #4, 5, and 6 who told me I had ALS ... so I figured I'd better start digging.

Now I'm starting my fourth year, and I would love to go see #3 and give him the one-finger salute. "I'm still here, you turkey."

 

[Mottom]

To Doris Little. Thank you. I have an appointment with your Dr down in Tassie on Monday. Had a visit from Jennene last week as well. Nice lot of people you have over that way. The Local Palliative care Dr and advocate visited me last week for a 3 hour"getting to know you". They were most informative and because of my rapidly increasing problems have set the wheels in motion for when I am in need of their full services. My OT has had a hospital bed delivered to my home to make things easier in the meantime. Hopefully an electric wheelchair will be ordered shortly so I am not housebound. I can still walk very short distances with aids. My hands are now also being affected inasmuch that I am now unable to grip things and cannot lift anything of weight. All this in 4 months since symptoms started and two months since Diagnosis.

 

[brendapals]

mottom,
Wishing you the best with your next visit. Sounds like you've had much better than before working with you. Hate to hear about that fast progression-hopefully you'll reach a plateau and hang out there for awhile!
take good care,
-b

 

[Mottom]

I was just reading a post in relation to VA in US on this forum. Down here, I had to apply to Dept of Vet Affairs and provide documentation in relation to proving my MND was related to War Service in Vietnam. The reason I was required to do this is that if I did not I would have had to buy my own powered wheelchair at a cost of approximately $20,000. Luckily my application was approved so I have just applied for the chair and I hope that this will be approved also.

 

[glenn gavanaugh]

Mottom ... jerks like that aren't confined to down under. My 3rd neuro diagnosed me with myasthenia gravis (with no tests to back it up) because, he said "If it was ALS, you'd be six feet under by now." That was 2 years after the symptoms started. Then I met neuro #4, 5, and 6 who told me I had ALS ... so I figured I'd better start digging.

Now I'm starting my fourth year, and I would love to go see #3 and give him the one-finger salute. "I'm still here, you turkey."

that's horrible. how can someone be so uncompassionate?
I had a similar situation (though I'm not diagnosed with ALS - that's yet to be determined...) with a clinic doc a few days ago... when I told him that in retrospect I started noticing stuff a year ago (and definitely noticing stuff since August), he said, "if you started noticing problems nearly a year ago, you'd already be in a wheelchair. ALS is that insidious" - and then gave me a nasty glare. So. There you go. Ridiculous.

 

[BethU]

Proves my point yet again: Some neuros are just sadists who couldn't get into dental school :evil:

 

[thelma313]

Sheesh, call me naive I always thought people became doctors because they wanted to heal people. That Tasmanian jerk should not be treating patients! So sorry you received such horrible treatment, Mottom and you too, Beth.

 

[SKhan]

JPSugar,

Coincidently, my mom also had ovarian surgery in May 2008 and we first started noticing her symptoms in July 2008, which is when she first tripped. Since then, she has been progressing fairly quickly. Before the surgery, there were no signs of any weakness or pain that she complained about, other than the arthiritis she had in her wrists.

Coincidence or is ovarian surgery some how related to "activating" ALS?

Sohail

 

[Jennifer51]

A further update on my condition. My neurologist put 4 needles in my legs yesterday. One at a time they were connected to a machine. Pulled them out then bluntly told me to go and enjoy what little time I have left. Nothing more he could do for me. Dont make another appointment as you will dead. Thanks for coming. Didnt really make my day go well at all. A bit heartless of him, even if I already guessed the outcome of the tests. I wonder if any other people have had the same sort of terse statements in regards to their health.

My diagnosing neuro was almost as bad, and we were paying him privately, so he should have at least taken that into account. I was still flat on my back and recovering from the spinal tap when he marched in my room and said, the emg was concrete evidence of pseudo palsy...just THINK 3 years, no one has lived for more than 5, so just go off and enjoy yourself...prat...to tell you that you are going to die and then say go and enjoy yourself....he is still pretty naff when I see him...but now we are not paying him privately, it is under the socialised medicine. So anyway, I went to an mnd funded clinic, and boy what a difference. The neuro has arranged everything and more for me, he rings to check on me, even when I was away from london and in florida, and I can email him any time and he replies immediately. There are a few dreadfull ones out there, but many angels.