newly diagnosed

[brendapals]

Hello to everyone,
I thought I had typed on this over the weekend, but I can't find it, so I will try again.
I began to have some slurred speech about mid January 2008, having been a nurse for 8 yrs, I called my neuro ( who had done an EMG july 2008-normal) and he ordered a carotid u/s to rule out stroke. That was done in March, I also had an MRI of my brain done in March-they were both negative. I had a lot of labs done in April-testing for myasthenia, lupus-all negative. I have been taking Plaquenil for Sjogren's for about 4 yrs. I went to another neuro on 6/3/08 and was diagnosed with ALS. What makes it so amazing is that my oldest brother was diagnosed in 2007, he lived 14 months. I never dreamed I could possibly have ALS. I took care of my mother with MS for 26 yrs, my father-in-law at my home for 7 yrs who was 91. My husband and I have 3 wonderful sons and I'm too busy to be sick!
I went last week for my first ALS clinic appt, took my husband and boys with me. I started taking Rilutek and Lithium on 7/4/08. Luckily my insurance pd for both of them.
I am still working 4-5 days a week in a physician's office of rheumatology. Two of our boys play baseball every day.
So here I am, my name is Brenda Pitt, no kin to Brad Pitt, darn the luck-I could be having lunch in Jamaica! hahaha
Hope to hear from someone soon,
thanks for listening,
Brenda

 

[bluebottle]

Brenda
Sorry to hear about your diagnosis. I am sure you will find support here and answers to any questions you may have.

 

[brendapals]

Mahvelous! I found where I posted! Yes, I can keep a heart beating in my nursing field, but I'm not really very good at the computer, but I will be learning!
brenda

 

[fmarino]

I'm a little confused, Brenda.

You said you had an EMG on July of '08 that was normal but you were diagnosed with ALS in June of '08. How were you diagnosed with ALS after having a clean EMG the following month?

 

[brendapals]

oops, sorry. My EMG was in July 2007-with my first neuro visit. I had gone to him with some numbness/tingling in both arms/hands/feet- not constant or painful, just worrisome. My family hx included my mother with MS for 26 yrs, 13 yrs at home with a walker, 13 yrs bedfast in a long term care facility unable to walk after a fall and a fractured right ankle. My brother was diagnosed with ALS in April 2003 and died in May 2004- not sure if it was ALS or a heart attack that took his life. He and his wife had chosen to have his body sent directly to science, so we'll never know.
However, I am praying that I have the ALS with the 30 yr warranty! I have a lot of support in my home town, as well as the town I work in about 30 miles away. I already have a team put together for the ALS walk in Evansville, IN ( which is where I work). Our official name is "the pittcrew".
Anyway, the EMG last summer showed nothing really, he said I might benefit from some physical therapy for "possible carpal tunnel syndrome", but I didn't try that because it wasn't really all that bothersome. About Jan of this year, my sister noticed I was talking on the phone "like you are drinking something", I guess I didn't want to believe that my speech was slurred. I tend to be a very fast talker, as well as a frequent talker, so it was a major adjustment to slow my talking down. My husband says it makes it easier for him to get a word in edgewise!
I wonder if I should ask my new neuro for another EMG? I'm not really having any more numbness/tingling than I was a yr ago. My appetite is good, I just have to take smaller bites to avoid choking. I have seen a speech pathologist that I grew up with that has done 2 e-stim treatments to my throat. Don't know if that will help or hurt, but my current neuro said it was ok to do.
I am also in the process of having my numerous amalgam fillings in my teeth changed to porcelain. The book I read the first week of my new diagnosed was "Eric is winning". Don't know if that will make a difference either.
Anxious for some input,
brenda

 

[sharonca]

You might want to search about Eric on this site. You will get numerous opinions.

Sharonca

 

[CindyM]

Hi Brenda- welcome to the forum. I have to admit I lost your first post on you. I tried to make a new thread out of it but clicked somewhere I shouldn't have and poof! Sorry. Glad you figured out things on your own. Cindy

 

[brendapals]

yes, I found my way back to this thread tonight. But so far all I can do is go to "new posts" and start looking at the list.
So maybe I'm jumping the gun by removing the fillings? My neuro told me he would only do it if the dentist offered to do it for free. Mine of course is not free, but my dental insurance helps a little.
I have so many questions, but I have to say I am very open about asking them!
thanks,
brenda

 

[fiddleplayer51]

Brenda,
Welcome to the forum, although I'm sorry you had to locate us.

You say your last EMG was July 2007? The new neuro who diagnosed you with ALS in June 2008 has not done an EMG? What did he base his diagnosis on? Did he also not do an NCV test?

I also take it that you've not had the Familial Amyotrophic Lateral Sclerosis (SOD1) DNA Test? Five percent to 10 percent of cases of ALS are thought to be genetic, and about 15 percent to 20 percent of these are caused by mutations in the chromosome 21 gene known as SOD1 (superoxide dismutase 1). The test for determining the presence of this chromosomal mutation is a simple blood test. Here's a link to an article about it at the ALS Association website:

http://www.alsa.org/als/genetics.cfm

Sharonca is right--do a search here on Eric and see what has been posted about that book.

All the best to you, Brenda. I hope you find all the info you need, and we're always open to questions.
Jane

 

[awieleba]

brenda

Hi

It sounds like you have had your share of trials!

You just sound so positive and up beat. I commend you for that! I dont have a diagnosed yet, but it does concern me that you had a clean emg and then still went on to als. I had a clean emg @ als clinic and was holding on to that but it seems you can have clean ones and still progress to als. Do you have brisk reflexes? I do. I will have anther emg in november, so only time will tell...

I am at the ball field 2x a week with my 6 yr old. At this level of play, we are just glad when they dont lay down and roll around in the outfield! lol---they are so cute.

take care!

april

 

[fiddleplayer51]

Brenda,
I answered your last post last night, but it had a link in it and has yet to show up here. Hopefully, one of the moderators will read it and get it posted soon.
Take care,
Jane

 

[brendapals]

hey kids,
I say that every morning to the doctors I work for- I hope no one minds!
When I saw my neuro on 6/3/08, he said my reflexes were very brisk. He used 2 different reflex hammers and seemed eager to teach the medical students how to assess reflexes. When I took my family for the ALS clinic visit on 7/1/08, he also talked about my brisk reflexes.
After spending the last hour reading different posts, I have noticed that my hands seem smaller, and I know I haven't lost any weight. They just seem thin.
Avery, our 14 yr old, had an allstar baseball game tonight (yes, I am a very proud mama!). He played shortstop and in 4 innings, he was responsible for 6 outs. I drove about 40 miles round trip with Avery and the 17yr old and 7 yr old, and I'm still up and able to type and yell at the boys! The game was rained out, so we get to go back to the ball field tomorrow night. No where else I'd rather be!
happy wednesday to all,
brenda

 

[fiddleplayer51]

Brenda,
I'm glad you get to go to the ball field again tomorrow! Y'all have certainly had your fair share of rain this year. :-|

Way to go, Avery!

Now, if we could just clobber this ALS! :twisted:

Hang in there, Brenda.

All the best,
Jane

 

[hopingforthebest]

Hi Brenda

You have a great attitude and three boys to keep you going! Will keep you in my prayers as I do all on this forum that battle this stinkng disease.

Hoping that they are wrong and you have something treatable!

Enjoy the ball games as I always loved going to my sons. My husband coached when they were in little league and as they played high school ball we made every game! They are 30 and 34 now and always talk about how they were so lucky to have us there.

Keep strong and keep that great spirit!

Patty

 

[rose]

Hi Brenda, I know this "welcome" is late in coming, but this morning I was thinking that you'd said something about sjogren's in an earlier post, and so I went and found this thread... About the time you first joined the forum was when I was preparing to go down to Hopkins for my last visit, so I wasn't on a whole lot and didn't follow up... I remember reading your second post and not finding the first one to refer to....

I'm so sorry to learn of your brother and the illnesses that your family has had! You're a very upbeat, remarkable woman, especially in the face of all of this.

How did your doctor's rule out sjogren's as the cause? As I (probably) have sjogren's myself, this is partly just out of curiousity. I didn't respond at all to plaquenil, prednisone or methotrexate. I'm now off of all of them. Lately my eyes and mouth are drier again, and its mostly during the night, and probably because we (finally!) got an airconditioner in the bedroom, so less humidity. But, I digress, I have this little nagging fear that maybe my doctors should not have given up on the Sjogren's angle with me, even though I've had 4 specialists at this point say, no its not sjogren's, (honestly, no one seems to be able to tell me how Sjogren's does affect the nervous system if it has infiltrated it) and of course now my Hopkins neurologist says there really isn't another cause to look for, that she just wants to re-run the emg's in a few months before officially proclaiming it to be ALS. I do have both upper and lower neuron involvement.

I thought I read that you work in a rheumatologist's office, (of course now I can't find the reference) are you aware of patients that have nervous system involvement from sjogren's or lupus?

I certainly hope that you don't progress and of course that it's something else other than bulbar onset and that they were wrong, wrong wrong!

take care