Got the dreaded news...

[CarolSue]

Hello,

I posted on here a month or so ago under the "do I have ALS" section. Well I'm back as a full fledged member, I guess, I got my ALS diagnosis one week ago.

I had the nerve conduction study January 18th and the neurologist told me immediately when he was finished. Although he said the test was not "definitive" (I think he wasn't seeing the twitching at the time) but knowing all my symptoms, said it was a dead giveaway. Apparently it is significant in my leg and very mild in my arm.

After returning to my original neuro (she doesn't perform the tests) the same afternoon, she looked at the results and confirmed what he told us. She told us she would be my doctor but I was more than welcome to get a second opinion or go to an ALS clinic? etc. She prescribed Rilutek and said to see her again in 6 weeks. I didn't get any real info about what to expect...that's probably my fault because I told both of them that I had done a lot of research and knew what I was facing.

I do plan to find an "expert" that can give me more of an idea about the rate of progression...I know everyone is different.

I'm a 57 year old female and noticed my first symptoms early spring in 2015. I guess you would call it limb onset. First thing was my gait changed, then early summer a slight limp. Fasculations began in my legs early summer and tried to climb onto the seat of a chair to reach something on top of my upper kitchen cabinets in early August and fell onto the chair...my right leg alone could not support my weight. Fasculations continued and spread, mostly still my legs, but can have them anywhere now...arms, back, stomach and now my left eyelid twitches too. It seems to be more active if I'm nervous...but some evenings it's just more active than others. Oh and the muscle cramps were noticed probably before the muscle twitching and just continued to get worse over the summer.

I've had 3 times total that I've had some minor choking on my own saliva. I've done that many times throughout my life...but the fact that it happened 3 times in one month told me there was probably something to it.

Started with the usual MRI's on my upper and lower back. Found some issues with my neck or upper back but they didn't feel it was causing my symptoms. Then MRI on my brain...was sooo hoping they would find MS but the brain was fine. Had the nerve conduction study...not sure of the exact names of each but had both, one without the needles and one with. Also has some bloodwork the same day which showed an mild elevation in "something or other" that indicates muscle degeneration?

My neuro says to go into it with the attitude that I will live for 20 years...she actually has a nurse who works one or two afternoons a week in her office that has had ALS for 20 years...lucky girl. I really need to know more so I can plan my LIFE.

Wondering if anyone knows of a good ALS specialist in Kansas or Oklahoma. I live on the southern border of Kansas so going north or south doesn't matter, I just want someone knowledgeable.

I know I'm droning on here...sorry for that. I know some of you have limited abilities reading/typing, etc as I've seen mentioned in other posts. Yes I've been lurking around her for a few months now and read a lot.

I appreciate any and all comments and it's comforting to know there are others out there that truly care and are willing to help!

Sincerely,
CarolSue

 

[lgelb]

CarolSue,
Before we reluctantly welcome you to our club, you should get a 2nd opinion. The KUMC clinic seems like one good option. You can check the MDA and ALSA chapter pages for Kansas; there are also [smaller, I think] clinics in OKC and Wichita, and any Kansans w/ experience can post.

Best,
Laurie

 

[Nikki J]

I am so sorry to hear this. A second opinion is always a good idea I believe there is benefit to an ALS clinic at least for the first part of the disease anyway. I think hope for the best but plan for the worst. No one can tell you the future but you can certainly get more information. Start making lists for your follow up with your neuro and for your second opinion. Don't hesitate to call if there are pressing questions now. It is only to be expected that you did not ask a lot on diagnosis- it is such a shock.

Btw the tests you had the nerve conduction is the shock part, the EMG is the needle test. It is the EMG that would have shown the changes that made them say ALS.

 

[affected]

Sorry to welcome you.

You are now telling us quite different symptoms to what you came into DIHALS with.

As Nikki says it must have been an EMG as an NCS would not show ALS.

There is no expert who can tell you what progression you will have, truly there isn't. People living 20 years does happen but is rare, on top of a rare disease.

I highly recommend getting to an ALS specialist for a second opinion, I hope you can get to one fairly soon. Not that we want this disease confirmed, but I would want to know it from someone specialising in this disease. Was the diagnosing neurologist an ALS specialist?

 

[swalker]

I am so sorry to have to welcome you here. I am sure you already know how valuable this forum is for both PALS and CALS.

I agree with the other posters that a second opinion is in order. With a diagnosis this serious, a second and third opinion are worth getting.

You will find a wealth of information here to help guide you through the coming weeks and months. Please let us know as you have questions.

Steve

 

[gooseberry]

Sorry to be welcoming you but you will have a lot of support here. There is an immense wealth of knowledge you can tap into...just ask away..

 

[CarolSue]

Thank you so much for your replies.

I looked up KU Med Center and my husband wants me to call them tomorrow. I guess I would need a referral from my neuro in Tulsa?

I do agree that a second opinion would be helpful and necessary. I will follow up with that ASAP.

Tillie, I'm not sure what you mean by "You are now telling us quite different symptoms to what you came into DIHALS with." I may have been more detailed in my post BEFORE my diagnosis as I wanted to include every little detail, but after having the EMG and two neuro's saying it's ALS, when I wrote this current post I may have skimmed over my symptoms for background on whats been going on with me and/or may have included a symptom in this post that I didn't in the first. There are soooo many symptoms and instances of different symptoms I've had...to mention them all.....well I guess I might have missed something.

I guess the important thing is that both neuro's had a list of all my symptoms and and after the testing, history, and physical exam their conclusion was ALS.

Someone asked if either was a specialist. The first neuro, the one who referred me to the second for the NCS and EMG is in her 50's and so no doubt has been practicing a while. Doesn't mean she specializes in ALS though. The second neuro who conducted the test was a young man. Once he gave us the results of the tests he performed, and gave me the diagnosis, he went on to say he was opening an MDA clinic in Tulsa and said I could sign up for it. Still doesn't mean he is a specialist. With that being said, I am planning to schedule an appt with KUMC. I was thinking second opinion all along...and you all have just confirmed for me how important it is.

I appreciate all of you and I warn you...I will be full of questions as we go along! Looking forward to positive and honest feedback from everyone.

CarolSue

 

[CarolSue]

Thank you for the info.

 

[CarolSue]

Thank you for your reply...I plan to contact KU Med Center tomorrow. I guess I would need a referral from my neurologist for insurance purposes? Thanks!

 

[lgelb]

You do not need a referral unless your plan requires it, but it may easier to get an appt. that way since otherwise they will just call the neuro(s) you have worked with so often more efficient to work forward w/o worrying about phone tag.

You or they do need to provide your full records from the neuros and the test tracings/notes.

There is a sticky on getting a diagnosis that may help you trace the 2nd opinion steps.

 

[Ells]

Sorry to welcome you Carol Sue,

Hope you get that appointment soon.

 

[affected]

Hi Carol, the reason I asked about ALS specialist is that not all neurologists know much about ALS, and even after many years in practice may have encountered it rarely. So we always suggest the second opinion should be from one that specialises. Rarely are people misdiagnosed, but we have found that when this does happen it is almost always a neuro that did not specialise. I hope that makes sense

 

[frankb]

Sorry to meet you on the forum but it is the place to be if the second opinion confirms ALS diagnosis. You can find advice and tons of info from some of the most experienced patients and caregivers involved in the unwanted ALS journey. Hope you were successful in making an appointment with KUMC ALS specialists. When you have arranged for an appointment please keep in mind to keep checking with KUMC to insure they have the required test results from your diagnosing neurologist before going in for your appointment. Speaking from experience, it really was a hassle getting the medical data from my neurologist to the ALS specialists at Emory. Usually is a disconnect between the neurologist's back office and the second opinion facility.

 

[CarolSue]

Thank you...a second opinion at KU Med Center is in the works.

 

[CarolSue]

Really frustrated...Called my neuro last week to start the referral to KU Med Center and the lady said she would leave a message for the nurse to call back to discuss it. Never called me back that day or by 4:00 the next day. Called again and she told me the same thing...I said but iv'e already called once and the call wasn't returned. She apologized and said she would leave the note on the nurses desk. Still no call, and that was last Thursday.

I've since contacted my primary, she was out for the day, but she gets her messages. She called me from home and said her staff was getting to work on it.

You would think there would be a little more compassion. If they wanted me to go thru my primary, they should have just told me that in the beginning.

I plan to write the neuro a letter...she may not even be aware that her staff are not up to par.

Sorry, just needed to vent!


CarolSue