Doc said..your 18 yr old son has MMN or ALS - Page 2

brendapals · 10-07-2008, 10:31 PM

Valya,
Bless your heart. I'm so sorry for what you are through, and I hope this finds you getting some rest!
You have definitely come in to a great bunch of folks on this forum. It's ok to vent, cry, laugh, scream, rant, or simply read with that box of Kleenex! I find that to be very relaxing at times.
I was diagnosed in June this year. Four months have passed, and yes, it was like a meteor came crashing in on me and my family. But, our lives have continued on. It took a lot of faith, a little bit of elbow grease, and a ton of determination, but I'm happy to say I look at life much differently now. I think my hubby and our 3 boys do too.
Please know that you have my support and I will keep you and your family in my prayers,
Never give up,
Never let up,
Never lose faith,
brenda

Valya · 10-07-2008, 11:51 PM

Typed this once and it went away...

Wright: Thanks for your patient and clear explanations of terminology and testing, among the best I've seen. You certainly have a wealth of knowledge. Everyone on this site is fortunate to have your input.

MUP's: I don't see this specifically mentioned in the report but to be totally honest, I'm not sure of all I'm reading. Sorry I don't have information for you on that one unless it's there and I'm just not seeing it.

Hyperreflexes: As you noted, doc doesn't indicate this being asymmetrical, so that sounds positive. However, I know for certain this isn't usual for him. He's had the same ped doc for 10 years and he and I both noticed hyperreflexes immediately during his exam. Doc even commented that he had never seen my son's reflexes so responsive in prior examinations.

I'm sure that you had to think a bit prior to stating that there was cause for concern due to his denervation, and I want you to know I appreciate your honesty.

As others have said, good advice to disregard what our local doc said and instead, look to the specialist for his opinion. It's easier said that done, but I'm working on it.

Do you have advice on the Nov. consultation appt, specifically if there is a test/procedure we should insist on or one to avoid if possible? Obviously we need do what the specialist says but I'd like your opinion if you don't mind.

THANKS for your time and encouragement

l4dybugg: I do believe I felt that hug all the way from Knoxville! Thanks so much for that! I don't have a awesomely cool animation, but ...

**** rocket propells cluster hugs back to l4dybugg ****

Valya · 10-08-2008, 12:00 AM

Brenda,

So sorry you have been diagnosed yet your posting is so positive. I firmly believe that something good comes out of bad, although you have to dig pretty deep to find it sometimes. Looking at life differently can be a good thing and I'm glad you found something positive.

This forum has an interesting mix of caring and supportive members. I'm glad I wandered in.

Thanks for your prayers, good luck to you. I'll keep you and your family in my prayers also.

Zaphoon · 10-08-2008, 12:15 AM

Valya,

I, too, am sorry to hear your son is having a tough time at such a young age. Odds are in his favor that the DX will not be ALS. That is just from statistical data that I'm sure you've read as well.

On his next visit, you can probably expect them to repeat the EMG and NCV and take blood samples for testing. They will take a look at his physical presentation as well (i.e. strength testing, his gait, muscle responses to certain stimuli). Basically a repeat of a lot of what he has already gone through. I'm just speaking from experience, I'm not a medical person.

Make certain you have a list of questions to ask the neurologist and also have a history going back to when this started to present. This gives the doctors an idea of rate of progression.

Bring a notebook or memo pad with you to write down any findings they share with you. These things can be easy to forget or confused with all of the other information you will receive.

Best of luck! But remember, odds are in your favor your son probably does not have ALS. I agree with Wright; it was a bit premature for the first neuro to bring ALS into the picture at this stage.

Zaphoon

Valya · 10-08-2008, 01:26 AM

Zaphoon,

Yes, I've read enough to know that his age is definately in his favor. It's good to be reminded of that, thank you. Unfortunately, I've also read enough to know, as Wright said, "there is cause for concern". He obviously has something serious but odds are it's treatable and I will keep believing/hoping that until I'm told otherwise by a more credible source. (That's the brave front, not the one that slithers at 3am.)

I've been keeping a record of every phone call/doc visit but hadn't thought to record the progression back to when we noticed it-good idea.

I have learned from dealing with my younger son's diabetic condition, to write down what the doc say and never leave until you're certain you understand what they are saying. I've also learned to not be intimidated by medical personnel, whether that's the doc in a crisp white coat or the nurse who is really too busy to change an IV.

I hate to have him go through those tests again but I know it has to be done for a variety of reasons. He hasn't yet had any blood work which is surprising to me.

I've saved your post for reference in preparation for the Nov appt. THANKS for your time and support. I continue to be blown away by so many people on this forum who are willing to help someone they don't know.

Valya

wright · 10-09-2008, 10:00 AM

Valya

I'm glad I could be of help. If you are going to a specialist, they will do all of the necessary things to fully evaluate your son. Most tests will undoubtedly be repeated (as Zaphoon said) so be ready for a long day. Keep doing your best to remain hopeful and as I said to you before: lean on us when you feel the need.

Take care.

P.S. MUP's would probably be the last line in the EMG data (the data for each muscle is typically written horizontally in rows) and it will likely say: increased, or decreased or normal or polyphasic.

Valya · 10-09-2008, 08:34 PM

Wright: This is a summary of what I believe you are referring to..

"Nerve conduction studies are all within normal limits except for mildly increased distal latencies of the ulnar sensory wrist on both sides. This could be due to temperature effect as his hands were quite cold to touch on both sides. However, all other conduction studies, including amplitude of the sensory studies are well within normal limits. The motor conduction study velocities were normal on both sides."

If this isn't correct, sorry. I never heard of any of this until what? Three weeks ago? Ask me anything about Type 1 diabetes and teenagers and I'll give you an ear full...unfortunately I know too much about that. Thanks for your patience with my bumbling.

Interestingly enough, the doc who performed the EMG sent his findings to the ped doc, who forwarded to us. There is some additional info which was not included in the report which went to the specialist. Some of the additional information is that his hyperreflex is 3+. He noted ankle clonus on both sides and atrophy of the foot intrinsic muscles but not as pronounced as the left hand. There are other findings also, those are the ones that stand out to me. Btw, I don't expect you to further speculate on his condition based on this additional information. I'm just annoyed all his findings weren't in one cohesive report.

Several sites I've looked at have stated the results of an EMG are dependant on the skill of the examiner and that what is tested is as important as how compentently it is done. I guess we need to wait for new EMG results from the specialist and compare.

This time delay is frustrating. If what he has is treatable, then let's get it going!@!@!@!

Thanks again for your time.

Zaphoon · 10-09-2008, 10:17 PM

Valva,

Your comment about the time delay regarding diagnosis and subsequent treatment is on the mark.

Unfortunately, when it comes to this sort of malady, there are just so many disorders/diseases/syndromes to test for and rule out in order to come to a final DX. The "no treatment yet" thing is what frustrates so many of us that have yet to be diagnosed.

In this case, we sort of have to get worse before we can get better due to the general process that the doctors must go through to obtain a correct DX. Please be encouraged because you are now in very competent hands regarding your doctors.

Zaphoon

Valya · 10-10-2008, 12:54 AM

Zaphoon,

When this all started, out of ignorance we thought we would have a diagnosis immediately after his first EMG. Never having known anyone with this type of health issue, we had no idea it might go months or even years without knowing, inspite of countless tests and procedures.

I understand why it takes so long but, as you know, it's soo frustrating. I'm certain his left hand has atrophied further since July. If it's treatable, then TREAT HIM before the atrophy and weakness get worse and if it's not treatable, then by golly I want to hear the straight truth so it can be dealt with.

I keep calling UC Davis to check for cancellations. Maybe the receptionist will get tired of it and bump up his appt.

Thanks and you take care

Zaphoon · 10-10-2008, 08:28 AM

Valya,

You know that old saying, "The squeeky wheel gets the grease!"

I'm sure your phone calls are having an effect. Hope you get in and get your answers very, very soon so treatment can begin for your son and the frustration of all of this waiting will end.

Zaphoon

rose · 10-10-2008, 08:54 AM

Quote:

Originally Posted by Valya

Zaphoon,

When this all started, out of ignorance we thought we would have a diagnosis immediately after his first EMG. Never having known anyone with this type of health issue, we had no idea it might go months or even years without knowing, inspite of countless tests and procedures.

I understand why it takes so long but, as you know, it's soo frustrating. I'm certain his left hand has atrophied further since July. If it's treatable, then TREAT HIM before the atrophy and weakness get worse and if it's not treatable, then by golly I want to hear the straight truth so it can be dealt with.

I keep calling UC Davis to check for cancellations. Maybe the receptionist will get tired of it and bump up his appt.

Thanks and you take care

I agree and understand! Keep on calling to check for cancellations, you never know! How is your son handling this emotionally? Is he expressing much or keeping it to himself?

wright · 10-10-2008, 11:35 AM

Hello again Valya

What you have quoted is called the nerve conduction study which is another part of the EMG that is performed prior to the needling of the muscles. I'm quite surprised that the MUP data is not on the report. In all actuality, it probably doesn't matter, because the test is going to be repeated when you go to your next appointment.

Reflexes rated at 3+ are not that much more increased than what is considered normal. Reflexes are rated on a scale from 0 to 5, with 2 being considered normal (0 is no reflex found while 5 is as hyper-reflexic as is found). I know his physician said they were increased from what he had seen before, but when was the last time your son had them tested? There can be variability.

Do your best to remain calm and know that you will be in good hands when you go to UC Davis. We all remain hopeful for you and your son. Take care.

Valya · 10-10-2008, 06:35 PM

Wright-I didn't think I had the correct information but figured perhaps I was looking at it wrong. Then there is definately not one mention of MUPs in either report.

His reflexes were tested at his physical last year and appeared normal. I don't believe there was a value placed at that time. His responses during this last exam were 'flying off the table' as he put it and we haven't seen that level of response in any prior exam since he was born.

Since this will all be repeated, as you mentioned, we shall see.

Calm? There are good days and not so good days. Tbh, this was a not so good day.

Thanks for your response. And you take care also

Valya · 10-10-2008, 07:13 PM

Rose and Zaphoon

I called for probably the 4th time attempting to get his appt moved up and finally the lady says.. "Well, we don't tell a lot of people this but the clinics are all on Tuesdays. If you call on a Monday, you might get lucky and we can put you into a cancelled spot for that Tuesday."

So I'm calling Monday am and again after lunch. We have three more Mondays to go til that week.

Squeeky wheels.... wahaaaa whooooo

As far as how my son is handling it... it's hard to say. He's very private and doesn't want to really talk about it. I know he's scared and has been depressed. He's starting college in Jan and has a part time job washing/moving airplanes, sanding wings, working for a private aviation company. I worry the sanding is too much for his hands but he gets annoyed if I mention it. We made potato skins last week. He had some trouble cutting the green onions, which requires no strength of course, but his dexterity seemed a bit lacking.

Mostly he's a computer geek and spends a lot of time on 3d modeling/animation, some vid games...I've been known to join him in a game or two since we have multiple computers.

He's setting up an F-16 simulator piece by piece. He bought an infrared headset that moves his computer screen image as he moves his head and it's totally awesome. He has a rudder, special joy sticks. It keeps his mind off going where it doesn't need to go right now.

You both take care and thanks for caring about someone you don't know~Valya

northerngirl · 10-16-2008, 11:09 AM

Valya,
I would be doing the same with the phone calls! You go girl!
Hey a question for you, you mentioned 2 thing that make me ask. 1 computor, second cols hands. Probable nothing but, what is his posture like? I am going thru some stuff that makes me wonder. An I would like to know any options.