Status
Not open for further replies.

barrymac20

Member
Joined
Sep 15, 2016
Messages
12
Reason
Learn about ALS
Country
Ire
State
na
City
Dublin
Hi all. Apologies in advance for taking up your time.

I'll start by saying my name is Barry. I'm 36 , am married and have 5 year old and 1 year old daughters.

I have some ongoing worrying symptoms and questions that I wanted to ask you about. I'll try put in chronological order to make it as clear as possible

I had a virus earlier in the summer that affected me bad (CMV was the virus). It had me rocked for 5 or 6 weeks big time. In and out of work/bed/docs etc.
I was extremely anxious during this time as I had cancer a few years ago (2012 with Chemo) and due to it taking it very slow to get bloods etc back my anxiety levels had me up the wall. The virus affected my liver and they tested me for Hep B etc which all came back clear. But again, due to result delays and unnecessary anxiety I was in bad shape.

Anyways. I got the news after 5 weeks or so that it was CMV, pretty common apparently etc. Was delighted. Thats the back ground that proceeded my worrying "ALS" related symptoms.

Week 1 - 2 days after being able to "relax" over the viral thing I got a sudden pain in my forearm. An hour later my whole left side (arm and leg) went all tingly and felt strange.

I went to hospital but they let me go after clear bloods and no clinical weakness or sign of stroke etc. They said it was post viral.

Week 1 - 2 days later I was eating a takeaway and suddenly had trouble swallowing a piece of food. This scared the sh1t out of me. It lingered noticeably for a few days (the problem, not the food) but came and went in "severity". A number of weeks later and I'm not sure if that's totally gone or if I've just naturally got used to the different feeling of swallowing.

Around the same time as this the strange feeling in my left side had turned into what I felt was weakness.

Week 2 - Due to the "weakness" and swallowing issue I was sent back to hospital where they carried out more tests. Clear brain CT and MRI and clear Spinal cord MRI. (Although it did mention on report something about possible mild scoliosis but also mentioned this could have been the way i was lying during exam)(Also something about one image showing high signal on cord but wasn't evident on different image - report was issued as normal)

Again, no clinical weakness so they sent me on my merry way the next day. They gave me Xanax for 3 days which did help me to relax a bit but I had been reading a bit about MND in the mean time and was getting even more worried!!
I'll add that I had been having some muscle twitches at this stage but they seem to be popping up in different places but mostly my arms and hands

Week 3 - As the days went by I started thinking that this was actual weakness in my left arm. I was gauging this based on the fact that it was more of a struggle to carry my one year old and had to keep shifting her to my right side. Also started noticing my voice a bit shaky and some strange feelings around my jaw.
Can I also say that it was around this time that I realised my voice was a bit hoarse and had been on and off for a few weeks.
Was back with my GP that week and she told me its viral and stress and anxiety etc. She prescribed me some valium which helped me to relax and I stayed off google for a full week!!


Week 4 - Back to my docs and she was happy to reduce my valium dose but as I was still having the "weakness" and some throbbing around my throat she said she'd arrange a nerve conduction study and emg - subsequent appointment arranged for May 2017!! Was also noticing my hands a bit fiddly with money and typing etc that week.

Week 4/5 - on holidays in the sun for 10 days thinking i'd relax but I then started feeling like my voice was slurring a bit, or maybe its a lisp. hard to tell. No one commented apart from one time when I'd had a drink. Was a bit hard to relax when I was hearing this every time I spoke.

I will say that it was definitely becoming more of a challenge to sound like I was speaking normally. In other words my voice sounds different and on the slurry side. Also was noticing fatigue on my arm when drying my daughters hair with hair dryer.

Week 6 (This week) - Both shoulders now feel weak/different, can still lift arms etc. Joints in both hands feeling stiff and sore (especially left) but I'm typing away here with not much difficulty, Just not as precise as I used to be. Last night was difficult to hold phone in left hand which was a first and frightened me.

I'll say that the issues in my left leg have also been ongoing. Mostly cramping in my calf on and off. Ankle feels a bit weak but this could be due to a sports injury I had previously.


Anyways, in general my anxiety levels are off the charts although the valium does help with that a bit. Also feel really tired all the time.

Right now as I sit here my left hand feels stiff, my left ankle and calf are throbbing and my speech is "slurry" nearly all the time. I think people notice but havent said anything. Twitches every now and then also.

I apologise for the long post but wanted to try get everything out there. Any advice would be great as I'll be waiting a while for my EMG!!

Barry
 
You have 2 likely explanations here- neither of them ALS.

Post viral syndrome. It can do some very strange things and take months and months to go away. Not a lot you can do for it except eat well, stay hydrated, exercise, relaxation and stress management.

Delayed neuro effects of chemo. Follow advice above.

Diffuse symptoms are not the way ALS starts and if you had such virulent ALS it had affected multiple areas so quickly there would be no missing it by your doctors and you would be incapacitated there would be no doubt
 
Last edited:
Nikki,
Thanks for taking the time to read my long and convoluted post and also for replying. These do seem like the most obvious things that are going on, especially with symptoms occurring after virus.
I guess the fact that these symptoms have been progressing on a daily basis had me very worried, especially when it's hit my voice and swallow. But as you say the pace at which it's happened over 6 weeks probably points away from my biggest worry...

When you say "diffuse" do you mean widespread?
 
Yes
Definition of diffuse:
ADJECTIVE
spread out over a large area; not concentrated:
"the diffuse community centered on the church" · [more]
synonyms: spread out · scattered · dispersed · diasporic
 
Just an update.
I was with my gp today and explained my additional symptoms of slurry speech and the fact that my right arm is now affected and she is going to try expedite my neurology appointment.

Everyday I seem to have something new to add to my list of ailments but currently, in addition, to my affected speech both my left and right arm feel much the same. I.e. sore hands and forearms and aching in shoulders. All of which are contributing to "weaker" arms, which I'm gauging by the difficulty in lifting my child.
I must say that the thumbs on both hands are probably the worst spot at the moment. Starting to become very stiff and sore.

Would it be possible with als to have the same symptoms on both arms but still have both sides functioning, albeit it weaker? Or would one side be dead before the other would be affected?

Sorry about bringing this up again but my doc wrote "possible lower motor neuron disease???" on the end of my referral letter and it's peaked my anxiety!
 
No one in my family and no one I have ever met has had bilateral onset. You went to your gp who kindly is trying to expedite your appointment. She has to put something down to justify the referral that does not mean she believes that is the problem. Around here before insurance companies required mountains of paperwork to justify imaging studies it used to be common for doctors to order a brain imaging study with the reason being " headache rule out space occupying lesion" ( aka brain tumor). It did not mean the doctors believed it was the problem for the vast majority of patients and it wasn't
 
So even though there is six weeks or so from first symptoms in left arm and first symptoms in right arm ( with slurring symptoms somewhere in between) that would still be considered bilateral onset as the left arm is still functioning and because if the short time span?

Makes sense about the referral letter but just got me worried again....

Thanks
 
Mainly because of the time span between arms, yes, we would call that bilateral, which is not the norm. I agree w/ Nikki that the post-viral scenario is most likely and that your doc is trying to expedite the testing.

Best,
Laurie
 
So my cousin who works in the hospital with the neurology department has been able to get my appointment expedited. So I'm in for emg and ncs in three weeks.
All of a sudden I'm even more scared and nervous as its now only around the corner!
Since I've last been on I'll say my symptoms have settled somewhat, I.e not progressed much more. My toes in both feet are sore at times but I guess that points away from all. Still getting lots of twitching in my body that is mainly in left arm and hand, with lots of cramping pain. Right arm symptoms not as bad but my swallow and speech have deteriorated a bit, I.e more regular occurring, although the severity of the swallow problem seems to be up and down. Anyway, just an update and still hopeful.
Thanks.
 
Last edited:
Barry, I think I can sum up all your symptoms pretty quickly. You said you had many pains, feelings, even a problem swallowing a take-out meal. You've seen doctors, who give you meds to reduce anxiety, but nobody has mentioned ACTUAL weakness, which really is the only thing that matters.

There's no ALS there.

No matter what we say here, I'm sure you'll still be scared of ALS. So it looks like it's up to you to solve that anxiety problem. Good luck.
 
The swallowing issues started there but have continued for last number of weeks. I have no actual weakness in my limbs but I'm more worried that the actual weakness is in my tongue due to my speech and swallow issues. My speech in particular is a worry for me.
You're right though. I need to deal with anxiety. One way to do that is see neuro and have my exams done. I will be scared of ALS until then. Hopefully all will be OK and my mind will be put at rest.
Thanks all, and apologies for all the posts.
 
EMG + NCS tomorrow. Really scared to say the least. Don't think I'm weak in the true sense of the word (still able to do things) but definitely weaker than I was a few months ago. Lots of pain and cramps in arms especially, left one mainly. Twitching constantly all over my body, head to toe. Stress probably not helping. Anyways, hope all goes well tomorrow. Not sure if I'll get results on the day or not.
 
Best of luck. Expect you will do fine. Please let us know your results
 
Hi there. had my ncs and emg and the preliminary results were all normal. Technician done the ncs. The neuro done the emg part and she was in and out in ten minutes. She specifically said I don't have MND. It's all a blur. I had myself so convinced and I never really got to ask her questions and really explain my symptoms.

She needled both sides of my lower leg and my upper leg. In between my thumb and forefinger, forearm, bicep and tricep. All on left side. All were normal on insertion and reacted properly when moved. All normal units..... She didn't do any needling around my neck etc. but the technician assured me afterwards that any bulbar issues would have been picked up in the other areas tested. Does that sound right? I was convinced anyway.

I have a follow up in two months for a proper neuro consultation but again my fears have been allayed. I still have all the same symptoms and I guess it'll take a while for them to subside as I attempt to get passed the anxiety. Thank you all for listening to and answering an irrational idiot.
 
Status
Not open for further replies.
Back
Top