Old 06-30-2005, 04:16 PM #1 (permalink)
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Default New, and now depressed, and scared!

Hi All,

I feel as if I've been run over by a truck... I'll tell my story.

Sometime Last July 2004 I woke up one morning, and while stretching my legs, pulled by left calf muscle (So I thought.) I immediatly started walking with a slight limp. September 2004 I was still walking with a limp, so I went to see my GP. He did some stretching of my left leg, and as I felt some pain in the Quad Muscle (Felt like bad cramps) I was told, I more that likely pulled my Quad, so give it about 12 wks to heal. December 2004 I was getting worse, Quad Muscle was wasting, and I started falling on the ICE, so I went back to my GP who then refered my to a Neurologist. March (2005) Saw the Nerologist who did NCV/EMG tests. Abnormal findings, and so I was admitted to Trillium (Mississauga) hospital for suspected Neuropathy. At this point my Left leg was almost useless, and I could no longer move my Right Leg below the ankle. April 2005 Now a patient at Trillium Hospital, MRI of the C-Spine are normal, MRI of the Brain and neck is normal. Results of Lumbar Puncture showed elevated CSF Protein count. Results of sural nerve biopsy showed mild Axonal loss, no nerve demyelination. I was given 400cc's IVIG for 5 days. May 2005 Still no improvement, and still in the hospital. Given a second round of IVIG for 5 days. At this point, I could barely move my right leg, and my left leg was like a log. Two fingers in my right arm, started curling. and I was completely wheelchair bound, unable to stand. I am refered to St. Mikes hospital, to a specialist Dr. G. Midroni. June 2005 I have lost the complete use of both my legs, and my arms, chest, and ab muscles have suffered significant muscle loss. Dr. Midroni does some more testing, and on June 24, 2005 Tells me, he is diagnosing possible ALS. Some factors still bother him, so he would like me to start treatment with CYTOXAN, as well and I have to do a Pulmonary exam, as I am now having a hard time breathing. All I can say is wow....

I am 36 Yrs old (Just celebrated my 36'th B-Day April 30'th) and this news has just devastated me... I'm not quite sure what to do next.

Will continue to update this post, and thanks for allowing me the time to cry on your shoulders.

God Bless.
David
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Old 06-30-2005, 05:00 PM #2 (permalink)
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Hi David,
Sorry to hear whats happening to you, but glad you found us. Lots of information and people to talk to on this forum. I am 38, have had ALS for five years. It sounds like you're in good hands. Feel free to ask us questions, as we can all relate. Try to keep your sprits up, a strong mind is the best defence we have.
Take care
Les
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Old 06-30-2005, 06:14 PM #3 (permalink)
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Hang in there and wait until you are assessed by an ALS clinic, Sunnybrook or Hamilton McMaster! I was diagnosed at 35 with a 3 and 6 year old children and I am still around 7 years later. It is normal to react this way to the ALS initially, I was shocked and depressed for a while. Good thing you have found this group. We are here for you!
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Old 07-01-2005, 08:28 AM #4 (permalink)
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Welcome to this group. It definitely sounds scary. Please feel free to cry on our shoulders any time. This group will help keep you together, we laugh, cry, and debate many topics here! Melissa
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Old 07-02-2005, 11:57 PM #5 (permalink)
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Hi David and Welcome,

Glad you found us. Hang in there. I hope that your results are not als, but whatever the outcome, we will be here for you. Are you still in the hospital? Your symptoms have progressed rapidly. Can you still talk alright? Swallow? We all know that you have to go through such a rash of tests to rule out everything else before you come to the conclusion of als. It is a long road, but hang in there. Keep us posted and updated, and if you have any questions at all, please feel free to ask. Good luck to you and your family. God Bless.

Stay Strong, Carol
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Old 07-03-2005, 12:47 AM #6 (permalink)
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You have a ton of support on this forum and try to hang in until the tests can be completed.
I am no ALS medical expert like many are on this forum, but it seems to have hit you hard real fast.
Don't give up and hold tight.
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Old 07-03-2005, 07:14 AM #7 (permalink)
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Hi,
Wow havn't you had a change in your life. I tend to be agreement with Theresa and Carol that by looking at your dates and the things that have happenend to you have progressed so rapidly there is definitly something happening and what a frightening experience it must be for you. I am so happy for you that you found the forum and our wonderful family group. This is somethng that has to be shared with people who might help you to figure out whats happening and help you with unknowns and hopes. You still do not know the outcome of what this is but if it is ALS it seems to be that everyone I have encountered with ALS are and always will be incredible wonderful people. Most of these peolpe are right on this forum and I am honored to have been allowed to hear their stories and insight into this disease which I knew really nothing about. I needed them at a time I felt I was in complete cahos because of my best freinds diagnoisis at the same age you are. If you do join us and thats only an if, you will be embraced and encouraged to look beyond the ALS and be reminded that you are still the same person you always were and you will complete tasks and accomplisments no one will ever understand but the other PALS that are so beneficial to this disease. They are our teachers and whether we have ALS or we care for people with it we become stronger for an awareness and a cure. I wish you the best with your tests and if you decide you have to join in, definitly feel welcome. We are here for you. Let us help take or to try and take the scarey part away.
Kim
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