glimmer

Glimmer, What sad news. Until the second opinion I am sure there was "hope". I can not fathom what you and your family are going through. I ask God to wrap Himself around all of you. I pray you find support here, it seems to be a great group. Do you have family support close by? All I know to say is that I am here if you need anything and I am in deep prayer for slow progression and His Peace to be on you all.

Glimmer, I hope you and your family are all doing well. I wanted to check on you, I think you had mentioned your husband had an appt today. Praying for you both.

Just checking to see how you and your family are doing. Hope all is well.

Hi lady!! Love your profile pic..beautiful smiles. The PM is at the top under "Quick Links" -"Open Contacts Popup". I had to download AIM to get it. When I try to start a Instant message I am told I do not have access/enough privileges. Good luck, hope you can get on.

Hi Glimmer...I just realized I posted this to myself..LOL..still learning..or I am just really stupid. Hope all is well with all of you!

Hi glimmer..That is a blessing that there is no weakness. I pray that there will not be. That is why our neuro has not diagnosed ALS because there was not any weakness at out last appt. Although EMG was abnormal and sign of MND. I hate that we are not able to PM one another :-(. Thinking of you and your hubby often. Keep me posted. We go to GP Tues...interested to see whats going on with his shoulder. I told him to go to neuro..but he is stubborn. ;-)

I tried to send you a PM, but it states I do not have access to this. I do not know why...I will have to investigate this some. Any suggestions? Thanks and hope you all are having a peaceful day!

Hi Glimmer. Thank you for reaching out, this will be quite a journey for us, this forum really helps. We were fortunate to get an appointment at the Duke ALS clinic after a preliminary ALS diagnosis by our local neuro. After 9 hours of consultation, exams, and tests we were given the ALS diagnosis on Feb 7th. Not easy, but at least we were accepting. We don't dwell on what's ahead, Tom prefers to only talk and react to the way he feels right now, and so far he's doing okay. His speech is pretty slow and slurred but anyone can still carry on a conversation with him. He's eating well in spite of some swallowing difficulties. He hasn't lost his sense of humor or his outlook of hope. But the future is an unknown and I don't want to think about it. Next appointment is March 13 and we're hoping he gets into a drug trial. Praying for all my new friends on this forum, and leaning on the Lord for direction, peace and hope! Take care and keep me posted! Blessings!

Thanks for the good wishes, I'll let you all know how it goes........I guess the final answer with the nerve & muscle biopsy is "are the nerves & muscles being attacked by something" or are they "dieing on their own". I kind of feel that if they were being attacked (auto-immune) they would have already found it. Every day that goes by brings us closer to March 5th and I'm trying not to panic...
I'm thinking only good thoughts for us all ! ! ! God Bless

Thank You Limegreenphysicist. We are waiting for the western blot to come back, as well as all the other bloodwork and we are waiting a month before another emg...just trying to get as much info on what I know they are testing for. I appreciate your response and am glad to be able to talk with people who have been down this road before.

Hi glimmer,

First I want to let you know that I do not think that Lyme's causes ALS nor do I believe curing Lyme's will cure ALS. My own experience is highly rare and I did not have ALS I have multifocal neuropathy secondary to Lyme's disease. There is alot of Lyme craziness out there. I do not promote going to a so-called LLMD. If your husband tested positive for Lyme's then your physician will treat accordingly. I recieved a total of 3 months of IV Rocephin because my disease had gone tiertiary. I reiterate this is very rare for lyme's to go tertiary. I dont want to give any misconception about Lyme's disease or any false hope. There is so much info about Lyme's on the internet not much that I find much factual information regarding as such. Any specific questions I am willing to answer for you and your husband however it is my own experience. Hope I can help in the future.

Thank You Casey. As much as I am sorry that you and others are going through this, I am comforted knowing someone els knows exactly how we feel, right now, in this nightmare. I appreciate your positivity, and will try to hold on to that for the days ahead.

Hang in there glimmer, my wife, kids and I have grown so much closer during all this. There are ways of dealing with this monster. One day at a time. If it so happened it's not ALS, then the family is a little closer.
I have never loved live more than I have in the past 6 months while I've been going through this.
While I can still do pretty much everything I have always done, I too worry about what may happen, and how will we deal with it.

I wish you all the luck in the world with getting a non ALS diagnosis. We still think my diagnosis is wrong.
But, one day at a time, and today has been another great day.

Cheers,
Casey

Thank You Kathy. That is the Doctor we are seeing today. We have a 1 hour consultation. I don't know what comes next, if they will start testing immediately or schedule within a week, its over an hours drive and my husband is self employed and still working so its going to be tricky to get there but this was our first direction. I am so glad to hear that your diagnosis wasn't ALS, I pray the same results will be our fortune. Thank you for posting to me. I am new to this forum thing and not sure how to post things but I'll figure it out. Just reading strangers good wishe for my family feels like a hug and I really need that now.

Hi Glimmer, Im so sorry about your husband, I can't imagine how hard this is on both of you. I just wanted to tell you that I went to the hospital for special care and saw Dr Felice, he is very good, very professional and know his stuff I was very fortunate that I do not have ALS. I am from Middletown and just wanted to say "hi" , This board is wonderful and everyone on here is very caring. Just reach out and they will help with support or any questions. Im so sorry, Kathy

He's only 36. A daddy of three beautiful young girls, and my husband, my half that makes me whole. He's done everything for us, he works so hard. I don't know who to tell, do we wait until the second diagnosis, how do we tell our children? When do we tell them? I have been reading and reading and reading past posts and watching stories of ALS on youtube, but I still don't know what I should do or how to handle this. Thank you for any guidance, I sincerely thank you.