Terrified of my symptoms

Status
Not open for further replies.
All I see is nerve conduction 4 things highlighted no summary. Is there anything else? Sometimes I can’t see everything on a page. Ncs has nothing to do with als. If anything this is giving you a non fatal relatively benign reason for your foot symptom. Do a happy dance
 
When i asked for my medical records, this is all they sent me. The only info I received about my emg was that it looked "normal" but the doctor who performed it didn't deal with ALS much.

My clinical exam will be in a month, but my drop foot and other symptoms have not improved, which makes me a bit worried especially with the family history.
 
Normal emg plus ncs that shows ( apparently) abnormalities that correspond with your foot issue. Pinched nerve causing foot drop. Quite common. Again nothing to do with ALS
 
Yes, you may have a nerve palsy which can cause a foot drop. No need to worry.
 
Update: I had my first clinical exam and second EMG done yesterday. I don't have a way to post my EMG pics right now, but I will As soon as I am able to this week. I'll start with the good.

Clinical Exam: Reflexes were normal and no atrophy was found. There was no clinical weakness, but my left leg did show weakness compared to my right. Just not enough to be considered "Clinical Weakness." Babinski test was neutral. Not much of a response. Negative Hoffman test. Negative clonus. Overall, my clinical was "Normal"

One month ago, I received my first EMG. The NCS part showed some issues, but my needle EMG was textbook perfect. No issues at all. I didn't feel confident in the person who performed the test so I was able to get into the Mayo and this is what my second EMG is showing.

The second needle EMG was different then the first. This doctor took his time and gave me a fair test. Here is the summary:

Summary: " Nerve conduction studies were normal. Needle EMG showed minor chronic denervation in left L5/S1 muscles. Also showed long duration and high amplitude motor unit potentials with normal or reduced recruitment in Left L5 and S1 innervated muscles. Fasiculation potentials were observed in left triceps brachii without motor unit potentials. Fibrillation potentials were not observed."

Clinical Interpretation: There is eletrodiganostic evidence of chronic neurological changes affecting left L5 and S1, which could be consistent with old or chronic L5 and S1 radiculopathies without denervation. There are no widespread active neurogenic changes to suggest definite motor neuron diseases on the current study. Follow up Emg in 4-6 months could be considered.

My doctor says at this time I do not have ALS. He cannot rule it out however and I will have to come back in 3 months for a clinical and repeat EMG. My father who is asymptomatic is doing genetic testing. He just had his blood drawn a few days ago and it will take 2 weeks to get the results back. They are doing testing for C9 gene first. If that comes back negative, they do the rest of the panel which will take at least a month. If he does test postive, I will do the test as well. My family and I have discussed this, and we felt like its time to know if we are gene positive or not considering the research being done in FALS.

The thing that gets me is how much change there was from my first EMG one month ago to this one. How can there be chronic denervation after 1 month?? My first EMG was literally perfect and now I have + and ++ signs on 4 out of 8 muscles tested. High amplitude, Long duration and Reduced recruitment with a ton of +. NCS is now normal?
.
As stated in previous posts. My symptoms started with twitches in the middle of May. 2 weeks later I woke up with left leg weakness that has caused slight drop foot. Cramping whenever I do physical activity. Twitches are constant, but widespread. I NEVER had an injury and NEVER had any pain. Also have not had complete failure of the muscle, just weakness. If these symptoms had been going on for a year plus, I wouldn't be as worried but symptom onset is only 2 and a half months.

I have trust in my doctor that at this time I don't have ALS, but he cannot rule it out. I can't help but think with this many changes in one month, what will it show in 3 months?

Is my EMG something I should be worried about? Can all of these problems and +, ++ be of any concern? Or am i overacting here? I am worried my next EMG will show active deneravtion. Any advice would be much appreciated!
 
Not all radiculopathies are symptomatic or triggered by injuries.
Look at the big picture: clean clinical exam. That’s what really counts. ALS would be unheard of with normal clinical strength and reflexes. On top of that, your EMG did not show the kind of patterns found in ALS which would be acute and chronic denervation in multiple areas.

Followup is to be thorough, not because ALS is a significant worry.
 
I don't believe you suddenly had chronic denervation show up in the last month. The greater precision, at the expense of more abnormalities, is part of going to somewhere like Mayo. Equipment, operators and protocols for EMGs differ.

However, of note, the abnormalities are localized, not widespread. This, coupled with your symptoms, is, as the report says, not worrisome for MND. So what I'm hearing is that you have subclinical weakness/mild nerve damage in your L foot and nothing else really forming a systemic picture. Injuries, compression and other causes of nerve damage can go back to birth, so just because you don't remember anything doesn't mean it didn't happen. They can also occur in sports, sleep and on a couch.

Remember also, that diagnoses are not made from EMGs. They start from the clinical picture.

It's good to know the genetic picture, and to follow up if your issues progress, but the odds are still very much in your favor.

Best,
Laurie
 
I agree Laurie, I was shocked when they said I had chronic denervation. My first needle EMG took 5 minutes and was rushed compared to the Mayo EMG which was calculated and done at a much slower and effective pace.

I was able to find both my EMG reports. The one that has black marks on it is the recent Mayo EMG. The other is my local doctor EMG. This is the best I could do, and I understand if it’s hard for some people to read.

Very concerning that these changes happened in one month.
 

Attachments

  • B842BF51-0D98-46BF-994B-EAFA2A2E750B.png
    B842BF51-0D98-46BF-994B-EAFA2A2E750B.png
    1.2 MB · Views: 193
  • 4FE8F5EA-551D-4F08-BBFC-9C169DA882C1.jpeg
    4FE8F5EA-551D-4F08-BBFC-9C169DA882C1.jpeg
    1.8 MB · Views: 182
You misunderstand me. I am saying that EMG #1 evidently wasn't all that, not that anything actually changed.
 
I understood you the first time. I just worded my response wrong, my apologies. I do agree that that my first EMG was not done very well and that's why I got a second opinion from Mayo and feel like this is more accurate.

I am just surprised how different they are. You are right though, this all probably didn't just show up in a month. It just worries me that at my age of 29, my EMG looks like this.
 
We see these chronic changes here a lot. They rarely come to anything and often seem to go away.go and live your life. Worrying for three months won’t help. Hoping your branch is gene negative
 
My dad came back with a positive test for the C9 Gene mutation. He is still asymptomatic at age 59. Was told he has a near 100 percent chance to develop ALS/FTD by age 80. I have 4 brothers, so this has left us all worried. None of them want to know about their status.

Since my first symptoms in the middle of May, my symptoms have not improved. Weakness seems to be spreading, but only obvious in my left foot. I have no tingling, no numbness and no pain. Twitching in every area of the body and multiple spots at once. My twitching started, where my chronic denervation happens to be. I can't run much, play sports and workout like I used to. Obviously, this leaves me very concerned with my EMG results and family history.

My plan is to wait until November and hopefully nothing has gotten worse by then. I plan on getting supplemental insurance and life insurance durnig open enrollment in case I do have ALS. Anybody have advice on what type of insurance I should get?

Also wondering if anybody here with C9 gene has suggestions on supplements to take with this mutation? I am going to try and get some metformin as well. Although I haven't been diagnosed yet, I feel like taking supplements can't hurt. I would like to participate in any studies for people who haven't been diagnosed. Some people might think this is too much because I haven't been diagnosed with ALS, but I wanna help in any way with research at the very least. Any suggestions on where I can get help with that? I would get the genetic test myself, but I don't want to until I get insurance in place. Also wondering how far they are away with a treatment/cure for C9?

Thanks in advance with any advice!
 
Open enrollment? This is work related? Get what you can without omit falsifying anything. Good medical, life, disability and long term care. On the non work front without concealing your mayo event which would invalidate everything I doubt you could get anything. When I worked upping life beyond the initial level was subject to underwriting.

as your dad has a confirmed mutation I think that counts for making you a first degree relative of an affected person which is what studies want for asymptomatic people. They will likely want you to wait until after Mayo though. There is a study at UMiami called preFALS , there is DIALS at St Louis and Boston and also a study at Columbia in NY. DIALS doesn’t pay travel though sometimes you can do an ftd study at the same visit and get reimbursed. Miami pays I don’t know about Columbia. The Mayo I think also gave a c9 study. Your dad would also qualify for all these.

you could try TUDCA as a supplement if you wish. It is postulated to reduce ER stress in c9.

we should have results from the phase1-2 aso c9 trial next year - late in the year I think if it looks promising they will do another phase. The trial started 9/18. For reference the sod1 trial ( same type of drug, same company, same trial setup) started 1/16 and we are hoping for results and approval by the end of 21. I have hope the c9 will move a touch faster but not dramatically. It is unlikely to be a cure for those already affected but with luck it will help. There will likely be carrier prevention trials if it helps PALS but those won’t happen for a while
 
I talked to my HR lady at work and she said that I can't apply for supplemental insurance until November. Not sure if she is correct on that. The genetic counselor who did my dads test said she will only put that we talked about testing and won't write my dad tested positive on my record.

My records at Mayo only show my EMG which I have posted above and says I don't have MND at this time. But it's not a perfectly clean EMG either. I haven't told Mayo about my positive test as I went through my local hospital and won't have my dads test on my record.

I will definitely try TUDCA as well.

Would you suggest just calling those clinics neurology department?

Thanks for the quick response BTW
 
No don’t call. Google the studies for the listings
 
Status
Not open for further replies.
Back
Top