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Famdamily

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03/1993
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Greetings all,

I wanted to briefly say hello and that I am here to learn. I'm new here. Currently my diagnosis is suspected motor neuron disease following my neurological exam, EMG and MRI done in September.

I have already sought advice on understanding my EMG results from a member here, but if others know of information that will help, it is much appreciated. My EMG is posted in my photo album, for now.

The neurological exam results say: Demonstrated moderate wasting of the left upper extremity compared to the right with brisk reflexes graded at 3 with moderate weakness of the left triceps, biceps, wrist flexors, extensors and hand intrinsics compared to the right. (Yes, typing can be tiring.)

EMG demonstrated denervation of all muscles in left upper limb with chronic repetitive discharges in proximal muscles, involuntary units high complex/polyphasic with volitional testing. (The neurologist only tested my left arm. I am a tight wad and we discussed that a second opinion would go further.)

My cervical spine MRI showed no evidence of disc protrusion, spinal stenosis or foraminal narrowing.

My second opinion is scheduled for December.

Now for the strange part....this condition has progressed slowly for 20 years. I know, I'm one of the lucky ones. In the past year it has become significantly more debilitating and the second opinion will look for evidence that it is spreading. I have muscle wasting in my left leg now, along with other things, which may or may not be related.

Twenty years ago I was told I had Sobue Syndrome (learned recently is means monomelic amyotrophy), it seemed to have reached a plateau and to go live my life. I did. Now....things have been going downhill a bit. So...I found all of you. For now, I learn, wait for the next EMG and keep being a Mom until they figure out why I am getting worse or if I just feel worse because my reserve tank is aging.

I have 16 year old triplets (no fertility) and a 27 year old son, am a newspaper reporter and divorced. Oh and I take care of my 90 year old Grandpa who is an amazing human being.

It's a really nice place you have here and I greatly appreciate all the resources I have found already. Bless you all.

Famdamily
 

Ms. Pie

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Welcome! Yes, my only advice is to wait and see. You won't know how to proceed until you get a firm diagnosis I. I'm sorry you have cause to be here but glad you found us. I'm hoping it's something else that's treatable and it very well could be. Good luck Sweets!
 

llamar21

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Learn about ALS
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Welcome! I hope you find this forum informative and helpful. I'm new here as well and am just beginning a diagnosis. Continue to be strong and know someone here will always be listening to what you have to say. After all the posts I've read (and I've read a lot in the last 3 weeks) they are a great group of individuals. Take care!
 

notme

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Apr 3, 2011
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Hi

I don't think they can tell a whole lot from only testing one limb, as several disorders can affect one limb, apparently, and spare the others.

Normally, at least two limbs would be tested, I believe.

Personally, I would see a neuro muscular specialist. Most commonly, MND presents distally and progresses towards the trunk.

Hopefully, your appt in Dec will provide some answers.

The MDA will provide a diagnostic exam at their expense if finances are an issue, I believe.

Welcome to the forum. Hopefully your answer will be something other than ALS.
 

Famdamily

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03/1993
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llamar21, I thank you for the kind reply and the promise of an ear. I hope your own diagnosis goes smoothly and the news you get is better still. Yes, I have done a lot of reading too, already, and plan to continue. This site is a blessing and makes one feel less alone in this journey. Peace to you.
 

Famdamily

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03/1993
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US
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notme, I like your name and appreciate the advice greatly. Yes, the fingers stopped lifting first, although the atrophy and weakness pretty much followed and then progressed at a snails pace, until recently. I have always counted my blessings, knowing what others faced with aggressive MND. My neurologist understands that I am not a subscriber to "shot gun" diagnostics, which means they test everything, and then narrow it down. It is an expensive proposition and the number one credit issue in this country is medical judgments. I have made it thus far in life without debt and don't see any reason to stop watching our spending now, even when facing a MND.

He knew he wanted a second opinion after his findings in my arm; offered to continue; but said the second opinion doctor would likely want to run their own EMG and stopped. His recommendation was Mayo in Rochester, but after much consideration, I chose I.U. Med Center, which is close to home and won't interfere with my Mom duties at this stage. I have provided the second doctor with all my recent records and agreed to the EMG beyond the left arm. I have been very, very fortunate with the slow progression of whatever MND (or other) they ultimately decide I have. I continue to pray that this luck of the Irish holds.

Thank you so much for your welcoming message and the valuable insight you offered. I look forward to talking with you and appreciate what I have found here already. I am somewhat alone on this path, although surrounded by loving children. Having this place has already helped. I feel...far less alone. Thank you, truly. I hope that I can be there for others as you and other members have already been there for me.

Peace to you.
 

momap53

Very helpful member
Joined
Jul 2, 2011
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Welcome to the forums. I hope you'll find information and support here.
 

HelenL

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Famdamily, welcome to the forum, hope you find it the lifeline that I have found it to be.

A question... do you have health insurance, or are you paying for your testing yourself? It bothers me that you may not be getting tested due to the money issue. Perhaps you can contact MDA or ALSA to see if you can be seen in one of their clinics?
 

Famdamily

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Thanks Deb, I hope I do too. I have been fairly active for years on another forum in politics, government and news so have learned to not feed the trolls :)

Moms like you are one of the reasons I came here. I am fortunate in a very slow progression - until now. I want to understand this disease better and its variants like mine appears to be so far. I want to understand the research, what role government is playing and how people with this disease are treated on their journey and why the safety net that should exist in society when people become medically devastated has holes in it.

I am a mom first and my oldest is a Navy spec war veteran and thank God now back on home soil finishing his degree at college. I am also a 47 year old woman with experience in national, state and local politics, local governments, NASDAQ traded business, non-profit operations and being a care-giver to my grandparents and my parents, before their passing. Grandpa, blessedly is still here with us.

The medical subject is under siege in America because of polarized politics and patients get left in the dust of those scuffles oftentimes. If I can learn more and muster any of my experience to help others, I intend to. My brief re-entry as a patient, which I will admit I have avoided successfully for years, has already shown me the system has much room for improvement still. I hope I can help in any way and be of some small use while I face this long downward hill. I'm eternally grateful it has been long and also know that my initial rare diagnosis 20 years ago changed my thinking about life and most days I have brought that thankful to be alive perspective into my daily living. Most days. We all have those why me days filled with aches and pains and exhaustion.

Anyway, I'm sorry to dither on...but appreciate the chance to come here and find the answers needed to understand this bumpy solo ride I am now on...that people like you make feel less lonely. Thank you.

Melissa
 

Famdamily

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Hi HelenL,

I appreciate the welcome and yes, the lifeline.

Yes, I have health insurance through my present job as a reporter. What my doctor and I aren't sure of yet, is whether the pre-existing card will be played by the insurance company as tests and expenses mount. I also took a huge pay cut to move to the country to care for my grandparents and have the in-triplicate expenses of my remaining at-home children. There isn't a lot of change to spare in our budget and putting myself before their needs (not wants, needs) on the expense column is impossible. If there were some cure ahead that these tests were driving toward, yes, I would be more aggressive. My doctor wants to start Rilutek and I expect that will be when the rubber meets the road with the insurance company - or with the second EMG. No, I don't trust the system to be there with the safety net any decent, humane society should have at its foundation. My second opinion is with the ALSA center in Indianapolis. Depending on the outcome, I will be ready with questions about what help is out there. I have always paid my own way in life, even when I would have made more living on welfare than working, but I need to be able to take care of my children through this...and will have to figure out a way. My job is exhausting at times with sometimes 8 or more hours of typing, editing and the sort. With a left arm that barely functions, other limbs that aren't "right" anymore and a back that is more pain than support, it can take its toll. This disease is also invisible to others until you are in a wheel chair or using other devices, so externally, most people don't realize how much effort it took just to twist around to grab the cup in the drive through window with your right arm so you don't have another "fail" moment. Everything feels like a marathon some days and most people just wonder why you are tired or move a little slow when volunteering in the concession stand with other parents at the high school games (voluntold) while inside your head is saying, "don't spill it, don't spill it, crap I spilled it."

Back to your question though, it is good to have learned on here that some help may be available because the second opinion is at this center, so now I know to ask. THANK YOU.
 

Famdamily

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Deb, my response went to moderation apparently. It was rather windy (occupational hazard). We will see if it is allowed to show up. Until then, thank you.
 

CindyRN

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Famdamily

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Thank you to Ms. Pie and Cindy RN also for the welcome.

I have a question for Wright who was very helpful in translating my EMG findings in a visitor message.

When I was initially diagnosed in the early 90s, I had an EMG done on multiple limbs at the same center I am going to in December for my second opinion. Would it be constructive or helpful for them to locate that original EMG for comparison, now 20 years later? I'm not even sure if they keep those records. I was never given a copy of that first EMG. If it wouldn't be helpful to look back at those findings, I don't want to waste their staff's time on the search. If it would be helpful as a comparison, I can make the call and see if they can find it before my December second opinion appointment/EMG. Thanks in advance for any input.
 

wright

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Hello again

Those that conduct EMG's like to compare their present results with past results they themselves did. Having said that, it certainly wouldn't hurt if the old one is readily available, especially given that it allowed those neuros to arrive at a diagnosis. I would certainly ask.

Given the story you have shared here, your EMG makes a bit more sense to me now, especially why it was that only one limb was needled. Do know that with monomelic amyotrophy, other limbs could show signs of denervation and reinnervation (mainly reinnervation because its progression is incredibly slow) without symptoms ever being evident (might explain your leg issues). It might also be that your leg issues are not related to your present condition at all (spinal problems maybe or a slew of other things).

It sounds like you have things well in hand and that you're doing the things you need to do to educate yourself on those things MND. Welcome and feel free to write when you feel the need. Take care.
 

Famdamily

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Hi Wright and thank you, again.

It's a long wait until December for this EMG for me. When I am busy, it's easier. When I am not, all those leg cramps, fasciculations, weakness, stiffness, atrophy and the right (good) arm having its own issues...well you know...you've read it here before, you worry. While I was diagnosed in my late 20s, I'm fairly sure onset was in my late teens in one arm. Visiting doctors on a consistent basis has not been my forte, obviously, and generally only happens when I'm pregnant with triplets or my bad back left me unable to walk. I've been a health insurance company's dream for decades at a time with 0 claims otherwise. Guess I'm just making up for lost time.

I will see if they can find the old EMG for comparison with the one coming up in December. I remain hopeful my bad lower back is just doing a number on my legs. I've read about a few cases with monomelic amyotrophy having late progression, but didn't have access to the full paper without membership to medical journals. All other cases I have found seem to be up to the 20+ year study mark, which I am probably a decade past based on when I believe onset was.

The other research I still want to do is on the Rilutek my neurologist wants to start. There is a good chance (thank God) I would be on it a long time if slow progression remains so that raises questions too.

Thanks again, I can't tell you how much I appreciate you demystifying what those EMG values mean. This journey is nothing short of learning a new language.

I hesitated to come here because so many are suffering much more than I have had to with this in my life. I truly appreciate everyone's kindness and welcome even though I am an oddity in the MND world. I was walking in that world alone, until now, and feel far less lost and confused about what the doctor was saying because of the members and knowledge on this site.

Thank you so, so much.
 
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