AKjo
Distinguished member
- Joined
- Nov 3, 2010
- Messages
- 390
- Reason
- Lost a loved one
- Diagnosis
- 09/2010
- Country
- US
- State
- AK
- City
- Anchorage
Shar, It is natural for you to be feeling this way. Once you hear those ALS words, it is really hard not to focus on them. You do need to hold onto the hope that you get another diagnosis for your husband. Have you heard from VM yet about scheduling an appointment? This waiting has to be torture for both of you.
I tried to find, without success, the list of blood tests that my Gary had as part of the diagnosing process, but haven't located it yet. (And I thought I was being so organized with all this paperwork. Yeah, right.) I know there was something to do with testing for heavy metals - that might have been a 24 hour urine sample. I just can't remember it all, and I will continue to look. Others on here probably know off the top of their heads.
Is your husband able to go to work? It would help if you both can maintain your usual schedule while you wait for the next appointment. If he is having trouble with the foot drop and tripping or falling, an AFO would be really helpful. Call your doctor as it does require a prescription. There might an over the counter AFO, but I don't know for sure. My Gary was relieved to get his and surprised how much it helps. Of course we had never heard of it before. You probably think I am crazy for saying "your" Gary and "my" Gary, but I don't know how else to differentiate between them. I get tired of saying my husband or your husband.... they do have names!
To say this is a scary situation is minimizing the impact this is having on your life. Please feel free to vent any time - I have found the wonderful people on this forum to be so supportive and understanding. I wish I had more to offer than a virtual hug and sending positive thoughts your way.
Blessings,
Jo
I tried to find, without success, the list of blood tests that my Gary had as part of the diagnosing process, but haven't located it yet. (And I thought I was being so organized with all this paperwork. Yeah, right.) I know there was something to do with testing for heavy metals - that might have been a 24 hour urine sample. I just can't remember it all, and I will continue to look. Others on here probably know off the top of their heads.
Is your husband able to go to work? It would help if you both can maintain your usual schedule while you wait for the next appointment. If he is having trouble with the foot drop and tripping or falling, an AFO would be really helpful. Call your doctor as it does require a prescription. There might an over the counter AFO, but I don't know for sure. My Gary was relieved to get his and surprised how much it helps. Of course we had never heard of it before. You probably think I am crazy for saying "your" Gary and "my" Gary, but I don't know how else to differentiate between them. I get tired of saying my husband or your husband.... they do have names!
To say this is a scary situation is minimizing the impact this is having on your life. Please feel free to vent any time - I have found the wonderful people on this forum to be so supportive and understanding. I wish I had more to offer than a virtual hug and sending positive thoughts your way.
Blessings,
Jo