Hopefully a not so normal "is this ALS" thread.

[JustinFrench]

Hey all, I've been reading this forums for months trying to find a situation similar to mine and have been unsuccessful, so hopefully I can glean some info out of this or at the very least, allow the next person in my shoes to have something to read about. More than anything though, i imagine this is going to be more therapeutic than anything.

My story in a nutshell, Stage 3c cancer at 19, full radiation and chemo therapies (oxaliplatin, 5fu, xeloda, and I know they all cause neuropathy.) At the time of treatment, I noticed no signs of neuropathy although my oncologist repeatedly asked.

5 Years later, I was given a clean bill of health, cancer free! The only problem was, I started to notice my right leg was shrinking, and was much less strong. I go to the gym 4 days a week, I test righty vs lefty and there is a definite severe deficiency. That said, I have no gait problems, although my knee often hurts because of the complete absence of my Vastus Lateralus. At this time I also began noticing twitching in my weaker leg that would be so bad I would often struggle to go to sleep. Still, I was not worried, I survived cancer and felt great.

Fast forward 2 years and the fasciculations had spread to both legs, although there is still only atrophy in my right. I went in for Sensory and Motor NCS as well as an EMG. (I'm in Boise Idaho btw, that was a 7 month wait). It was at that time I began perousing this website.

I have all of the results from those tests, done approximately 8 months ago and can provide them if anyone knowledgeable thinks it would help, but for brevity they were abnormal. I had low amplitude snaps, low femoral CMAP amplitudes in my weak leg, as well as active denervation and chronic reinnervation. The EMG showed fasciculations, myokymia, fibrilations and P-waves. These were observed in all aspects of my right quad, my right gluteus medius, abductors, gluteus maximus, and some in my left leg as well.

The same muscles had decreased recruitment, large amplitude and prolonged polyphasic motor units. They checked my lower lumbar muscles at the time and these displayed no spontaneous activity. I was diagnosed with a progressive lumbar plexopathy, good luck finding any research on how progressive that even means.

Ok moving to the present. It is now 8 months later, and twitching, fasciculations, and the much worse myoclonus and tremors are affecting me head to toe now. My neck and arms, and my hands feeling constantly tired, drained, and slow. I know I don't have complete clinical weakness, I bench pressed 300LBs yesterday and I weigh 170 lbs. But I know my body, and I know something isn't right in my hands. I don't have anxiety, I have never been a hyperchondriac, and fighting with doctors to do checks is beyond frustrating.

I am heading to a masters program at the University of Edinburgh in literally 1 week, the doctors here can't get me in for any sort of neurological testing so I get to try out that dreaded UK NHS when I get there.

I am scared out of my mind, I have pushed to get head and neck MRI's that they finally got squeezed into next week to look for tumors. I don't even know what I am looking for here, I can't talk about this with my family, they have already gone through hell with my previous cancer fight, maybe I'm just looking to finally say this to another (non-doctor) human being.

But on the off chance someone can help, has anyone experienced anything like this, has any experience with long term chemo affects, can help me understand how their als for them advanced to use as a comparison. I have battled through cancer for years, I have been septic, and told I would not make it twice now. I have had surgery with no pain meds because my blood pressure was too low, I do not consider my self soft by any means I know all of this, and I can honestly say, without a doubt, I have NEVER been more scared in my life.

I can fight cancer, I can't fight my body stop doing what I tell it. I build stocks and bonds for a living and some days I can't get my fingers to type. I feel like my body is failing me and I am sick with worry. Can someone, anyone, PLEASE have a story they can relate to me?

 

[JustinFrench]

I also want to quickly reply and apologize for how long I wrote that. I did not intend to write a novel and I am sorry if I have broken any rules or wasted your time.

 

[Nikki J]

I am sorry for all you have and are going through. Good luck with grad school. There are plenty of people who have successfully negotiated the NHS and Edinburgh should have excellent physicians.

I remember someone who posted here a while back. Her husband had very worrisome symptoms that sounded very suspicious for ALS. It turned out though that what was happening was instead a sequela of his prior cancer treatment. I am sorry I do not remember her username and she has moved on as ALS was ruled out. I hope it turns out to be the case for you.

 

[Clearwater AL]

Wow! You bench pressed 300 lbs and you only weigh 170 lbs? I wouldn't be too scared at this point. There are members here who can't lift 30 lbs. Hope your 1st neuro appointment relieves your anxiety.

 

[JustinFrench]

Thanks, it's actually my 2nd neuro appt. Boise just has exactly 1 EMG specialist in the entire area, so the waiting line is awful. It might actually be better in the UK.

I appreciate the comments and will continue looking for answers, as I'm sure we all are.

 

[veggiepete]

if coming from the states...i would bring all your paperwork,as getting to see a neuro here is generally a referral from a Gp...several weeks later you may get a letter for an appt in a further two months.....i would be tempted to go direct to neuro's secretary and ask for an appiontment based on your previous visit in the states...

 

[Ottawan]

I was successfully treated for stage 4 colorectal cancer (colon, liver) with oxaliplatin, xeloda and irinotecan in combination ... 2007-2009. During treatment I experienced mild neuropathy in fingers and toes and was told it would be permanent. In 2012 I suspected that the neuropathy was spreading to my legs and when dropfoot (right) developed decided to seek medical attention. I also noticed that the right leg was getting thinner. After examinations by neurologists, MRI's of spine and brain, I was given a nerve conduction test immediately following which I was diagnosed with ALS (8/2013).

I suspected the chemo drugs may have triggered ALS. However, I have not seen any study result establishing a link and all doctors etc I have spoken to about this have simply said they are not aware of any connection.

Your situation is the first I have encountered which may link chemo drugs to ALS type symptoms.

Because the number of patients who have survived treatment are relatively few there may not be sufficient data and experience to incite interest.

In closing, I'd like to wish you every success in pursuing a definitive diagnosis.

 

[JustinFrench]

Thank you Ottawan, I am so sorry for your diagnosis and am saddened with your news. But FINALLY someone knows what I am going through. How bad had your symptoms gotten before you got a definitive diagnosis? My fascics had spread to both legs, I had severe atrophy in one (54 vs 50) circumference and the emg showed active denervation and chronic reinvervation. And the NCS showed severe decreaesed CMAP amps. The one weird part of the EMG was the I also had Myokymia.

I am confused as to what else they could be looking for? Do you remember what they used on the tests to definitively assign your als diagnosis as opposed to radiation or neuropathy?

Also, VeggiePete, I'm not sure how to go directly to a neuro secretary. With all the visa work, I know I will be going to the GP at the University of Edinburgh, but from there I have no idea?

Thanks you both so incredibly much, believe it or not, these answers are more information than I have been able to get out of doctors for months.

 

[MaxEidswick]

http://www.mndassociation.org/research/MNDResearch

 

[JustinFrench]

Just wanted to report I got one last neuro visit in before I leave for the Old World. No time for an EMG and NCS but as I figured, my perceived weakness is different from clinical weakness. (for the record, I do have clinical weakness in my legs, just not my upper body). Until the tremors or fasics actually result in atrophy outside of my quad or an EMG proves otherwise (will have to try and get it done in Scotland), I'm stuck with a lumbar sacral plexopathy, BFS, and some neuropathy that they gave me gabapentin for. Believe me, I'm not complaining, just upset I have more waiting to do for confirmations.

Anything I should know before I start eating these things like gabapentin things like candy? Also Max, is that a site that I can sign up so they can use my situation for research? I feel like that could help more than any amount of money I could donate.

 

[MaxEidswick]

>Also Max, is that a site that I can sign up so they can use my situation for research? I feel like that could help more than any amount of money I could donate.

I'll check with my daughter who is doing her master/phd in neuro bio in Northern Germany. she is pretty linked in.

 

[Ottawan]

. How bad had your symptoms gotten before you got a definitive diagnosis? Do you remember what they used on the tests to definitively assign your als diagnosis as opposed to radiation or neuropathy?

I did not have the extensive tests you seem to have had. MRI's of brain and spine were normal. The neurologist (recognized as an authority on ALS) diagnosed ALS immediately following a nerve conduction test and associated interview to pursue other symptoms. These were dropfoot and difficulty walking any distance without increasing fatigue and balance problems. He pointed out muscle twitches in a number of places. A follow up nerve conduction test four months later reaffirmed his diagnosis and his conclusion was that no further follow up by him was required. I am now in the hands of the ALS Clinic. I am sorry I cannot give you any specifics on the conduction tests. I was not given nor requested any details.
Wishing you all the best ...

 

[MaxEidswick]

>Diagnosed: 08/2013

happy anniversary! we made it the first year

How's your body holding up?

Max

 

[gooseberry]

My mom took 5fu as a stabilizing chemo and the xeloda and oxaliplatin as trial medications. She had horrible neuropathy. She stopped the trials because she couldn't deal with the neuropathy and the cancer wasn't being helped. She died 6 months later so she didn't have a chance at the long term issues. My sister took oxaliplatin for ovarian ca and also had a lot of neuropathy. She had about 2.5 years after she took it and continued to have neurologic effects. She called it chemo brain ...bad short term memory, bad balance, dizziness, etc.

 

[JustinFrench]

I went ahead and got the MRI and all was clean. I've made it to the UK safe and sound so I'll be going into a GP next month and seeing where it takes me. I managed to get into a neurologist one last time before I left the states and for the most part they don't know what to call it and wanted to do another EMG/NCS but being as I was leaving in a day we couldn't get it scheduled.

For now I'll just focus on school and do as the doctor tells me. It's somewhat frustrating how little they seem to know about motor neuron diseases. And that's coming from a person who isn't even diagnosed with anything of then radiation and chemo damage. I can imagine the frustration some of the people on this forum must feel. Again, thank you all for your input and responses, it has felt great to talk to normal people about this stuff.