Possible ALS diagnosis with support questions

[catcaniac]

My husband began having muscle weakness in June of 2010. We live in NC so he has been going to Duke Clinic for about 3 months. He has had 5 MRI's, 2 EMG's, a muscle biopsy, and tons of blood work. He has seen 3 different neurologists at Duke and none of them could give him a diagnosis. Last week we traveled to John Hopkins and the doctor there said his diagnosis was ALS but that he thought my husband should have a spinal tap and a cervical spine MRI to rule out any other possibilities. So we were referred back to Duke. We are so frustrated. They still have not scheduled the appt. with the ALS clinic there and no tests have been scheduled yet either. Mean time we are playing the waiting game. He went from using a cane to now using a walker and needing a wheelchair for any distances. I am pretty much staying home with him because he cannot get out of bed or often use the bathroom by himself or go downstairs without someone just carrying him. We have so many questions and I was hoping someone might know where we could find it. People on here talk about MDA and social workers, etc. How would I go about getting in touch with someone locally for support?

 

[abbas child]

The ALSA in North Carolina is here: ALS Association - Jim "Catfish" Hunter Chapter | ALS Association - Jim "Catfish" Hunter Chapter

There is a "Contact Us" button at the top of the page, and if you click onto that, you will see both email and phone number. You can take care of this without a doctor's diagnosis and begin.

The MDA/ALS required a diagnosis to be sent to them before they added me to their list.

I was diagnosed at Johns Hopkins, and also had to do the neuro bloodwork and the lumbar puncture before I was "officially" diagnosed with ALS. You, unfortunately, are trying to get this settled during the holiday season--That usually seems to slow everything down.

The ALSA loan closet will likely have the rollator walker he may need as well as a power chair. Expect them to assign a Coordinator who may come to your home to try and help get insight about your needs.

Wishing you a successful day and less stress. Meanwhile, we are here...
Ann

 

[TedH5]

I would definitely follow Ann's advice. Also if there is any way you can get John Hopkins to call Duke, maybe they can help you get an appointment. Another possibility is Emory University in Atlanta. They have a first class ALS clinic there and Dr. Glass is a wolrd renowned ALS Doctor / Scientist. I know that it is a few hours drive but it would be worth it. In the meantime you have come to a wonderful place for support here at the Forum.

 

[catcaniac]

The doctor at John Hopkins has been wonderful. He has put in a call to Duke which will hopefully speed things up. You are correct that I am sure things will be slower due to the holidays. We just want some answers as I am trying to make decisions about my work. Luckily, I have two weeks off for the holidays but work about 60 to 70 hrs a week when work is on. Thanks for the help. One more question I had is that my husband is having a lot of pain in his neck with the head drop issue. He has a light neck brace he wears but it is still difficult. Anyone have any tips on easing the pain, etc.?

 

[KC2U2]

As stated, the ALSA is the place for support and info. As frustrating as it is, many here will tell you it can take a year or more before diagnosis is confirmed. Hope you get the help you need.

 

[abbas child]

Do you have a wheelchair in your possession with a head rest? Tilting with my head in the rest is the only comfortable way for my neck. A loan closet chair needs to include tilt, recline, and raised legs, at a minimum. Elevation feature is terrific, but more difficult to get. Other than being in that tilt with head supported, bed is the only way my head gets support (my neck is actually what needs support, but you follow me, I'm sure).

There are many types of neck supports, but a therapist probably needs to make the decision about your husband's needs. They are usually expensive, and would be likely "durable medical equipment" if covered by insurance. I'm so sorry you have this wait along with your normal hours away from home.

My next thought is to ask if you have friends or neighbors who could help you with the caregiving as well as with homekeeping. Friends could do errands, make meals or sit with him while you go out. And, a wide mouth bottle (urinal) would be helpful if he hasn't begun using one. Just some ideas.