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Hi All,

My husband's spinal tap has been scheduled for 9/22. Trying to keep it together. Its hard. :cry:
 
Good luck, Michelle.
 
I'm so very sorry! I am also a Michelle Ann! My husbands symptoms are nearly identical to yours however he is 64 years old. He began with drop foot, had two surgeries, low back and cervical without improvement. He now requires AFOs and a dollar or walker to get around. Our diagnosis so far is Motor Neuron Disease but we see the neurologist on Monday and hope he has some kind of information for us. I think not knowing is the hardest part of all this. Be strong, we have a long hard road ahead of us, girlfriend! ❤️❤️❤️
 
Did the neuro say if he has excluded CIPD or MMN?
 
@ GregK
the only one to say it: unless I missed someone else please forgive I took a Cheech & Chong speed reading course: ALS is a diagnosis of exclusion. They test for everything it could be and call it ALS when everything else has been excluded.

That's it folks, all one has to do is sit patiently before some exam room until your name is called and you are ushered in, and they do unspeakable things to you! No not really, but some pretty strange things like the EMG I think it was, they take this Ping-Pong type device that sort of hits you on the head, the back of your neck and in the lower back, 2 runs each time totaling 12 hits. It didn't really hurt but is was strange, now "Nazareth - Hair of the Dog" streaming over my sound system, rocking, back to business. They did the Spinal Tap and that one did hurt, or was very uncomfortable at least. The Spinal Fluid was clear they did say, I've been pocked, prodded, pinched asked to stick my tongue out at all the doctors "Deep Purple - Highway Star", and a tube with a camera in it was stuck dome my nose, and they got a kick out of me eating different types of food and fluids, my vocal cords don't close as they should but again? I twitch all over my body, and a lot of muscle cramps, only the cramps cause pain, everything else is painless , I have worms under my skin my grandchildren say fascinated with the free show. OK I have the last two MRT's taken and the first one showed nothing except irritated nerves?. This last one showed the top of the nerve bundle in my head and they stated they could see the scarring of ALS.

I have one last appointment Monday with my Neurologist, I will be given the verdict ALS. But all the symptoms have been saying this for the last 2 months.

"Where, O death, is your victory? Where, O death, is your sting?" I'm Blood Bought so I know where I'm headed, at least that is taken care of, just all these appointments, Throat, food, exercise, Nerve doctor and a few more, now the race of my live has started and I am ready, again I say : "Where, O death, is your victory? Where, O death, is your sting?"
 
Hello. So, JJ (my husband) had his spinal tap done on Tuesday. Yesterday afternoon we heard that there was nothing in the spinal tap fluid to suggest anything other than him having ALS. I am so sad. Right now he is just saying, we will take it one day at a time.

We have an appointment at the ALS Clinic on 10/7 to meet with the team there.

I know I have to be strong for him, for our daughter (who does not know at the moment). It's hard to imagine that I can be strong enough for this right now. But, I know I will be. Suppose I need to get over actually knowing for a fact that he does have this.

There is so much we don't know, and we will have to learn. I am glad everyone is here to talk to now and going forward. Not sure anyone that is not going through this can actually understand.

Talk soon- Michelle
 
Michelle, if I prayed, it would be for JJ. Good luck.
 
my sisters name is Michelle. We are also new to this just being diagnosed in late July. The sadness is a horrible feeling and a very different sadness than I have ever felt. Telling my Daughter and his children took a lot of strength but helps you to get the secret out. You will go through o many emotions and will have a lot of questions. This forum has given me the strength and has helped every step of the way. You will not be judged for anything you say here and I am pretty sure every question, concern or rant has been something at least one of us has had. Let yourself soak I in for awhile and than decide what steps need to be taken. If you find yourself overwhelmed, to depressed or not sleeping go see your dock. You have to stay well both emotionally and physically. Trust me I have been there as well as most or all Cals.

The ALS clinic helps to put it all together and was vey helpful for us. You can also reach out to your local ALS association and they ill even come out to talk to you, answers questions and even loan things when needed.

You will be in our thoughts and I am so sorry you have to be here. Just know that there are very kind and caring people here.
 
Hey Michelle.
I'm so sorry that the testing so far points to ALS.
Keeping you in my thoughts and prayers.
All the best for the 7th. Not far away now.
God bless, Janelle x
 
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