Guess I'm in the Club

[KimT]

Hi All,

First, thank you all, especially Nikki, for helping me through the limbo phase.

I'm really too exhausted to type the details of my visit today. Suffice to say I heard what I didn't want to hear.

Another thing I really don't want to talk about is specific doctors and what I had been told during the last few months.

Unfortunately, it was recommended for me to see an ENT immediately because of my voice issues. So I'll be going back to Mayo, on the road at 6am Monday (it takes about two hours from here to there.)

God bless everyone.

 

[Nikki J]

I am sorry. However expected the news is always very difficult to accept. We are here for you

 

[BlueandGold]

So sorry for the diagnosis. Know you are not alone.

Vince

 

[Atsugi]

Welcome, Kim. Let us know how it goes.

 

[KimT]

Thanks Nikki, Vince, & Mike.

I'm not sure what to expect with the ENT. I'm also surprised that the consult. was scheduled first, then 3 hours later, the "test." My Mayo primary care ordered it but the ALS neuro at Shands agreed and said ASAP. My tongue still has strength. I have no idea why the raspy, hoarse voice. I also don't know why they didn't schedule a breathing test since I have never been above 80% since last November.

One odd thing was that Mayo's breathing test in December showed normal diaphragm strength but restricted breathing. I don't have allergies or asthma and that just didn't make sense.

I guess I should just stop trying to figure things out and give myself a break. I've been working 12+ hour days getting ready for this semester and my mind is racing now.

 

[swalker]

Very sorry to have to welcome you here. I always hope that folks will find a diagnosis that leads elsewhere. Most do, and a very, very few find they belong here. Sorry to see you among that select group of people.

As you have already found, this place is full of wonderful people. I have received amazing support and guidance from the folks posting here. I am sure you will experience the same.

Steve

 

[gooseberry]

The restricted breathing diagnosis has to do with the numbers of your breathing test. Can't fully explain it but one pattern is indicative of restrictive disease and one of obstructive disease like pneumonia or copd. Als breathing issues are restrictive due to the decline of the muscles of the chest, abdomen, diaphragm, etc.

Steve was told by a well known speech phd Dr. Emily Plowman, at usf, that his raspiness was umn spasticity of the muscles controlling vocal areas.

Hope this helps

 

[hjlindley]

Welcome to the club no one wants to be a member of. We are all here to help you. I have been wrestling with this devil for seven years. On your breathing test question, the diaphragm helps you breathe in but the rib muscles called the intercostals are what help you breathe out. If they are becoming week it's harder to expel air. The the raspy voice can also be the heavy mucus that comes along with this disease. It can also because by reflux if you have that problem. Sorry you found yourself among those selected and special few. One day at a time.
Hollister

 

[LifeEnthusiast]

Sorry you are here but welcome. Hope you find help, support and guidance in this forum. There are some truly amazing people here.

 

[anderkling]

Kim, you have posted many times before, and I was hoping for a different diagnosis for you. I'm sorry you have to face this. Let us encourage each other on this challenging journey. The time around definitive diagnosis is a particularly difficult one, and you have to deal with this along with the start of a new semester. My prayers are with you.
- Charlene

 

[bear1973]

Sorry to hear of your diagnosis, Kim. You are among friends here. I was recently diagnosed, and I found it hardest at the beginning. God Bless you.

 

[Green Queen]

Kim, welcoming someone here is very difficult, but as you know you are amongst friendly, caring, helpful people.
I look forward to getting to know you on your journey.
God bless, Janelle x

 

[Gembead]

Hi Kim, you will be surrounded by a wonderful support group here.
Love Gem

 

[Nuts]

Kim, I'm so sorry to read about your diagnosis. As you already know, we will be here for you. No matter what is going on with you, there are people here who will understand.

Hugs.

 

[Lynk]

Hi Kim,
I have been in Florida ALS diagnosis to. I went Shands in May...got a bad EMG, but no firm diagnosis...possible/probable...not sure which. I was told to come back in November, but then had definite decliNe since May so went to Dr. Boylan in July. I had to work it out for a second opinion as my insurance doesn't cover Mayo. Borland gave a straight diagnosis of ALS. Then got an appointment at Shands Jax clinic with Pulley. Now I am recorded as "probable" with him and have a return appt in Nov Once Boylan diagnosed I was suddenly in line for support, phone calls from ALS assoc. Person (Judie ) which was such a comfort. I felt like we were so alone in our limbo and once Boylan called it I went ahead with retirement paperwork, etc. have a trip to New England booked. I knew/know deep down this is ALS even though the Shands people seem more reluctant to make a firm diagnosis yet. However, I too have developed a raspy voice in the last month or so. I call it a froggy voice. I don't notice problems in other limbs, but Pulley thinks he saw a weak ankle....but still calls it probable. Anyway, I'm going forward with retirement, filing for disability and getting things in order. It was actually a relief to me when Boylan just said it.
Lyn