How to get MND without really trying

[patricia1]

YesI saw Dr Jeffrey Rothstein at John Hopkin. he was as cold as can be.

Within 5 minutes of reading testI brought to him. he told us it was als and left us both crying in the room .he is a heartless bastard.
PAT

 

[Valya]

Pat, my son was seen by Dr. Rothstein at Hopkins on 12/29/08. He did a thorough exam, confirmed the ALS DX and spent at least an hour talking with us. We honestly thought he was wonderful. I'm so sorry you didn't have the same experience.

The first doc who examined my son, took all tests, skeletal, MRI, EMG and we met to discuss the results. He said my son had either MMN or ALS and was referring him to UC Davis Medical Center, thank you very much, good bye. Oh, and btw, I've only been wrong once before in my DX, he repeated several times on our way out the door. We had literally no idea what either of these illnesses were, raced home and began googling. We found out the worse at the dining table, with no literally no preparation or support then had to wait 6 weeks to get into UC Davis for second opinion. It was 6 weeks from hell.

The 5 or so neurologists since then on this journey have all been totally awesome. We've been very fortunate.

 

[patricia1]

I saw dr rothstein in 05 maybe he got my message. I am seeing a wonderful one now in pa.
Pat1

 

[Big Mike]

I swear, most of these neuros just don't know what they're talking about. They seem to have no clue about ALS and its widely varying progression. I 've had definite symptoms starting in my left foot for almost a year now and I'm still walking with no aid and fairly well to boot.

 

[Mottom]

Unfortunately for me all five Doctors seen up to date have all come to the same conclusion, so I must assume they are all correct in their diagnostic findings. Indications to me is that if I was to see it out till xmas it would prove to be a real surprise to them all. None have said outright, but I understand what they are saying in their roundabout way. I would like them to be wrong, and am trying to be positive in my own mind of the impending outcome. Not a great deal has changed since my last update on this forum. A hospital bed is now in place at our home and an alarm system has been provided so that I may call if I need assistance. A new wheelchair has been ordered and that will give me greater mobility around our house.

I am awaiting the 4 x 4 extreme model and cant wait for it to arrive. Has all the available options to make life easier. Its impending arrival is something that actually brightens my outlook on things at the moment. I can still walk about 20 metres with the aid of sticks but I am knackered after that. Not allowed to drive now but still sneak onto my 4wd utv and get around the farm when the wife isnt watching me too closely.

 

[Mottom]

I finally have my 4 wheel drive 5 speed wheelchair. It is a godsend. I can no longer walk more than about 5 paces with sticks. Still OK behind my walker for 20 metres or so before tiring. I can go all day in the wheelchair. I have rigged up a device so I can collect the 70 litre garbage wheelie bins from the front gate(Some 300 metres from house). I can manouvre from the chair to my ride on mower and also my utv so I can get around the farm. I intend to keep doing this as long as my arms can still hold the steering wheel OK.

I still have major concerns about what the future holds but am now at least able to be a little more active in contributing to helping around the property.

 

[Al]

Hi Mottom. If you are going to mow lawns I suggest you use the search above and look up lawn mower tips and get the thread " Al's tips for full contact lawn mowing" You might find it interesting.

AL.

 

[aussie]

Hi Motton I am new here to. I lost my Mum to MND on the 4th of April 09. I am being tested on the 26th of May for the SODS gene. Mum was the 5th in her family to get MND. We call it the Copper curse.

 

[Doris Little]

Hello Mottom, How are you? Have you been visited by Dr, Bowers and if so how did it go. I have been overseas for the past 6 weeks.

 

[Mottom]

Hi,
Hope you all had a nice holiday. I have had two visits from Dr Bower when he visited Tasmania. Nice Bloke. Just comfirmed what all the other Doctors had found. Had a trip to Palliative Care Hospital due to severe breathing problems but I now seem to have this controlled. Basically I am now firmly comitted to a wheelchair whilst out of bed and am very grateful that DVA supplied me with a 4wd Wheelie. Have a small normal wheelchair for inside and I can still move myself from one device to another(with difficulty) General consensus of Drs now have me at a use by date of August/September but personally I am thinking a bit longer than that. Hope all is well up your way. Tom

 

[Doris Little]

I am glad that you liked Dr, Bower. He was wonderful with me. I am sorry to hear that yours is so rapid. I seem to be a little slower than usual. I am still walking with a walking stick and using a wheel chair for any longer distances. I have just received a motorised scooter from MND so that will get me to the shops.
We had a great holiday. Keep you chin up and keep positive! I know how hard that is.
Were you with friends on Anzac Day?

Doris and Tim