Does ALS hurt?

[rbtro]

Hi All,

Yes I had a muscle biopsy of the left thigh. Had no trouble, but this was about the same time that I gave up the walker and put in a stair lift. I was being treated CIDP up to this point. I had had a spinal tap, MRI's of the brain to tail, EMG, and NCV(Oct and March). I was continuing to get weaker despite the IVIG therapy and High Dose Prednisone. The muscle biopsy showed denervation. My neuro sent me to Johns Hopkins for a second opinion. The Dr. there explained that it was a diagnosis by exclusion. He said he could gaurantee that I did not have CIDP. He conducted another EMG/NCV and said it was much worse than he expected. He said there was no definitive test for ALS. We will say you have ALS and continue to test hopefully we will find something else. He said I have a Motor Neuron Disease with the worst case being ALS. He then introduced me to the director of the ALS Clinic. She explained to me what to expect and set me up for the next clinic. She gave me several handouts and a list of links for info. This forum being one of them. I have since joined several others and have learned much about this disease. I continue to take one day at time and I am adding to my equipment to deal with the increasing handicap. So far I am affected only in the LMN my legs, trunk, arms and hands. I pray that it stays there. I should have my Power Chair sometime this week. I also have put a deposit on a ramp van. I am hoping this will improve the quality of my life. I have been work and house bound for quite a while now. I am hoping to be able to get out more with the new toys.

Your friend in suffering,
Rich

 

[MtPockets]

Thanks Rich

I've only had my power chair a couple of weeks now and it is a blessing. I get to walk the dog again now and go shopping "ugh" with my wife. It does allow me to do a lot of things now that I couldn't before. I hope you get yours soon.

I stumbled upon this site with a search engine, I wish more doctors and hospitals would give us more information when they give us the big DX. Like refering us to support sites and stuff. Kinda not nice to say oh you have ALS, see you in 30 days. Bye! A lot of us without the internet would be lost wondering what the heck was going on, much less the support we get here.

To everyone who had or has anything to do with setting up or maintaining this site a big HUG and Thank you. You are making a big difference in our lives and words can not thank you enough.

God Bless,
Big Al
:-D

 

[Al]

Thanks Big Al. That would be David and myself and couple of other behind the scene helpers. Glad it is appreciated. AL.

 

[So Sad and Lonely]

Struggling to find Purpose

Hey,

Just need to vent. I have not got a grasp on how all this grief work is suppose to go. I just know the pain in unbearable losing your only child after 20 years. It stills blows my mind that she is gone. Last summer this time she was here and fine. Als only took 5 months to take her from me. I am so anger sometimes and think is so unfair. Is there anyone out there who is griefing from losing a young person to AlS. I would really like to connect to someone who understands kinda what it is like to lose someone so young to ALS.

Please if anyone is out there can you please get back to me or if there is anyother sites that you know that would help I would appreciate it.

Thank you,

So Sad and Lonely