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fionae

Distinguished member
Joined
May 30, 2015
Messages
240
Reason
PALS
Diagnosis
08/2015
Country
US
State
CA
City
San Diego
Hello. I'm new here. I'm grateful for this forum. This is my first post; I'm not sure how this all works.

I'm a female, in my early 60's. I started having speech problems in October 2014. In November 2014 the problems started to always be there; they never got better, only worse, & have continued to get worse on up to today. For the last few months, even my friends & family have difficulty understanding me. I've seen different doctors & specialists along the way; as it stands now, I'm seeing my Neurologist.

My Neurologist has done 5 blood tests, done an EMG (with small shocks, as well as the needles) on my right arm & leg, and he had a more sophisticated MRI, with & w/out contrast, done on my brain. (I'd had a traditional brain MRI a few months before).

He is not sure what is wrong with me. He says my presentation is very rare, difficult to diagnose, & could be a number of different things. The question I have has to do with when he did the one & only EMG in April 2015: he said it showed "no evidence" of ALS. I was, and am, so very grateful.

The question I had: I wanted to ask if anyone here knew anything about this kind of circumstance: all my symptoms are bulbar (speaking, chewing, swallowing, choking...), which I believe are Lower Neuron related; but he tested my arm & leg, which I believe are Upper Neuron related.

Do any of you know if with the EMG having been done as it was, if it would truly seem to be a meaningful result as to "no evidence" of ALS, since my situation is bulbar?

I want to thank you so much for your selflessness, your being there, and your listening. Thank you.
 
Fiona,
Actually, the arm & leg (and jaws, chest, throat, etc.) are controlled by upper and lower motor neurons working together (upper tells lower what to do), in order for the muscles to produce movement. However, an EMG can only detect abnormalities in the lower motor neurons since they are the ones sending signals to the muscles to move. This is a good summary that also describes the different types of bulbar dysfunction; there are several motor neuron diseases that are not ALS but can cause the symptoms you describe. If you have had no sx in the limbs and yet that was all he tested, I would indeed question that, for different reasons.

I would seek a second opinion from a neurologist with MND expertise, even if you have to go up to Long Beach/LA. Some Cali people can weigh in. Are you going to UCSD? Ideally, I would go to a different institution for your second opinion, in a different health system (e.g. not UCSD and UCLA).

"No evidence" is just that -- and he did not test bulbar regions, but for your speech to have gone downhill so fast, combined with other bulbar symptoms and no limb dysfunction as yet, certainly puts some of the other MNDs (Kennedy, PBP) ahead of ALS in the running.
 
Dear Igelb,

I want to thank you so much for your reply. I wasn't able to see it until now because my computer wasn't working, or I would written back much sooner.

I appreciate your explanation of the roles of the upper and lower motor neurons, and want to thank you also for the extremely helpful article ("summary") that you brought to my attention.

I think that a second opinion from a Neurologist with MND expertise is an excellent idea. I am willing to travel whatever distance necessary.

In relation to that, the Neurologist I am now seeing is not with UCSD. In that case, do you feel that UCSD might be a good place for me to turn for a second opinion?

Thank you so very much for your kind interest, your caring, and your thoughtful insight.

I hope that all is well with you.
 
Dear Igelb,

I had wanted to tell you how very sorry I am for your loss.
 
Thank you, Fiona. Yes, UCSD would be a fine place for a 2nd opinion. Drs. Cleveland and Ravits are widely-known experts. The Center has a Web site and the number on it is (619) 543-5300.

Best,
Laurie
 
Dear Laurie,

I cannot thank you enough for all of your helpfulness. It means a lot to me to have all of the wonderful information you provided me with regarding UCSD. It is so reassuring to know about the two particular doctors you mentioned. Again, I thank you so very much, and I send best wishes.

Sincerely.
 
Dear Laurie,

I called to go in to see my Neurologist a few days ago, for I had noticed something about my tongue...he examined it and I am having fasciculations there. He is making arrangements for me to try to see one or both of the Doctors at UCSD you told me about (which I was definitely going to do on my own as my very next step).

I am so sorry to bother you again. Laurie, I am so scared; I can't calm my mind down at all. I already knew from research I had done in the past that tongue fasciculations are not a good sign at all. Could you possibly write me a short note? I am so sorry, and don't mean to cross any lines. I also hope I have not offended or hurt anyone, for I know so many people here have already been diagnosed, and are living with diseases such as these every day of their lives. I know so many people here have lost loved ones to these diseases. I know you have, Laurie, and I am so sorry. I'm sorry for everything.
 
Hey, Fiona, being scared is nothing to feel sorry for (apart from sorry for yourself, which we all go through).

It's good that you're getting over to UCSD to get a better handle on what you do or don't have. Try not to be scared; you'll know more soon.

Meanwhile, as we advise anyone who obviously has "something," that you try to get the most out of each day, take stock of your resources for the future (personal, social, financial, professional) and try -- try -- to remember that for everyone who is fighting disease, there is always someone worse off. Keep us up to date!

Best,
Laurie
 
Thank you, Laurie, for writing me, and writing me so quickly. I appreciate your words. I appreciate your kindness. You have been helping me so much, in so many different ways. One of my names is very similar to yours...Laura. God Bless You, Laurie. Thank you.
 
Just wanted to say hi and second all of Laurie's great advice. You are at a horrible stage where something is clearly wrong but you do not have a diagnosis yet. As Laurie said nothing to apologize for. This subforum is for people like you.
Tongue fasciculations would scare me too in your position! You are doing the right thing seeking that other opinion. Let us know when you get a date
 
Dear Nikki,

Thank you very much for your post to me. I am so sorry to learn of your own personal situation, and am so sorry for all of your loved ones' struggles.

Your understanding and support mean a lot to me. I will let you and Laurie know when I receive an appt date (and IF I get an appt...I was told by my Neurologist's receptionist that the UCSD doctor would have to review my case to decide if he wants to take it.) (Things are in the processing stages right now.)

Sincerely.
 
Dear Laurie,

Ive had some bad news. Is there any way you can write me privately? I dont know the rules, or how any of this works. I appreciate you very much.
Sincerely, fionae/Laura.
 
Dear Nikki,

I thank you for contacting me. I 'lost' the information you so kindly provided me. I do not have a regular computer; I just have my cell phone. I really am not at all good with technology; I became mixed up and lost the page that appeared. I am not asking you to re-provide me with the information.

Is it ok to contact you like this? I want to follow the rules. Thank you.

Sincerely, fionae/Laura.
 
It is probably still there. Look at the right hand near the top under your user name you will probably see last logged in under that a link for private messages. Click on that that should bring you to your inbox. Click on my message. Unless you actively deleted it it is there
 
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