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SnowyOwl

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Feb 1, 2017
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Country
Aus
State
South Australia
City
Adelaide
Hi ALS members from beautiful South Australia. I wanted to post some of my symptoms, not that I believe I can get a Yes or No. In a way I just need someone to listen to me as I'm too upset to share with close friends, or other family members other than my wonderful wife and two boys. My wife has Fibro, my boys are 20 in May and 18 this year in Dec. In a way I'm very grateful I started my family young (I'm 39) at least they are close to being young men who can support my wife if anything happens. I'm hoping for the best, trying to think of anything positive to think about.

Apologies for the very long post, I guess everyone starts off this way. I'm a project manager professionally so I'm a details person sadly.
I believe this started back in May-June 2016. I was eating a Turkish bread and noticed it felt like it had been stuck and was really worried. I originally thought it was stuck in my throat and was quite panicked for some time. I had a Dr's appt in a week or so, she believed it was nasal drip I already had and was worse from the irritation of the hard bread on my throat. She gave me Fess (nasal decongestant) to help.

For a time it felt like it helped but it really felt like it was getting worse (like I was being strangled 24 hours a day) In Oct, 2016 I headed back to the Dr for more ideas. At that time I had a full blood checkup and my Dr suggested appt's to have an Ultrasound to check my neck for anything, and an Endoscopy from a throat specialist. Meantime Blood test results were fine, they did a full analysis for tumor markers and liver, kidney etc were all fine. Only issues where I had elevated thyroid antibodies and was maybe borderline diabetes (never followed up) My blood pressure was great (In Dr's own words, I run and still try to a few times a fortnight and I'm very very active. Can't sit down is what my wife says) The results for neck and throat were fine

In Nov 2016 I just started to try relaxing more and it seemed to help in some way, I feel I just accepted my throat was hurt from the Turkish bread and needed time to heal. To my annoyance I started to develop sharp pains in my right side of my scrotum so off to another specialist for a scan, which came back fine as well. Suspected sperm granuloma from a vasectomy I had many year ago. I got a referral to a specialist but was happy to leave it until anything changed. The pain had started to dull, settle down a little, enough for me to leave it for now.

In December, 2016 I noticed extreme pain in my chest, to the point it felt like I had acid being poured inside me between my ribs. It was very painful so back to the Dr. She suspected that I might have a problem with my back as she tentatively said it might be Costochondritis from a bad back. So off to the Chiro she sent me (first time I've ever visited one in my life) I have since found out from an x-ray that I have degenerative problems with my neck, C6, C7, middle spine T4, T5 and T6 and a pretty bad compression fracture to T11 which we suspect I got from playing Ruby League about 20 years ago. Around late December I noticed I was getting sore doing things in my legs, hands and arms that never really bothered me before. I put it down to the Chiro adjustments and maybe being too busy over that time of year (I don't do anything with family for X-mas so it wasn't that)

In first week of January 2017, I took a week plus a few days to get some rest, my Chiro gave me stretching techniques that really helped with middle chest pain, or at least it felt that way. But middle of January I had a teeth clean that was very aggressive (to me anyway as I was jolting in the chair a lot from the pain), and an adjustment on my neck the same day. After that headaches started to develop in a major way the next day. To the point I couldn't function for two weeks at all, chronic pain that no heavy pain killers could help with. It felt similar to the chest pain, like my head was being burnt and was especially worse when I laid down so I got a chiro pillow. After two weeks of no sleep, constant pain I went back to the Dr who said I needed an MRI. My uncle had/has a pituitary gland tumor (benign) and my sister has also had a pituitary gland bleed in her head so the Dr didn't want to muck around. I also noticed cramps in front legs, back of legs and arms and fingers tingling. The MRI came back this week as fine. No MS was apparent, which the Dr said should make me ecstatic.

I have I have now noticed (this week or fortnight) that I have what I perceive as more reduced strength in my hands, and what appears to be atrophy in my left chest and wrist. I have enough strength to lift things, haven't dropped anything (except for me just being normally clumsy) or tripped on anything. My legs do hurt a lot lately to the point where I'm getting two hours a sleep max as the pain in my front knee, calves, and tingling in my arms is really bad the longer I sit still. If I walk it still hurts but not anywhere near as much. I have also noticed twitches in my left wrist area, and both calves (they seem to follow pulse)

Yesterday, Feb 2017, I had a Dr's appt, she dismissed all of the problems as just mental and not to worry about it as my results for MRI were fine and blood test 3 months ago was fine. She did a strength test, only in my hands and said I had equal strength, which to her I did but I tried to explain it was much harder to resist then it should be. My arm ached from it far more than it should have for the rest of the day.

I tried to be positive and went off to my Chiro appt. Before that I went for a little walk, to sort of test strength, tiredness in my legs which we didn't test and noticed that a short walk my legs were burning, totally stuffed. When I went to my Chiro appt I mentioned it and she said that I shouldn't worry and proceeded to do a Babinski test. (I had no idea what it was and when I asked her she just said it was interesting). I have since looked it up, and realised from my research I had a full reaction on my left side, where the symptoms all reside, toe def up and others spread. The poor chiro looked rather horrified and at the end of my appt said I should just try just relaxing more, or ask my Dr what to do next.

Now I'm panicking majorly as I have a definite area of wastage, twitch in my left arm and both calves, though maybe right side is nervous twitch. Significance strength reduced to normal, burning pain, tingles in legs and slightly in arms, and now a positive babinski. It sounds crazy but the condition that I was worried about or the Dr was, is far behind any thoughts of getting ALS, MND.

I'm heading back to the Dr on Monday to ask for a Neuro referral, but I'm already in my mind expecting the worse as every single symptom thus far has lined up perfectly to every early stage, onset, progression path to ALS I've found around. I'm worried and know that even doing that is pointless as there is nothing that can be done if I have this disease. Should I wait until I start tripping, dropping things or can an EMG even now find and give a diagnosis? Thanks for listening if you got this far.
 
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Yes, I would get the referral to see a neuro/get an EMG, though other nerve problems are still more likely from what you describe. An MRI is not definitive for ruling out the lot. I would also stop all chiro. Do keep us posted.

Best,
Laurie
 
Thanks the response, I do appreciate it. I'll see the Dr on Monday and see how it goes.
 
One thing that amazes me is how painful the burning, cramps are all over my legs. I guess that's the atrophy? I'm sorry I don't really understand how that works.
 
Last night my wife measured my muscles. I have sadly clear atrophy in lots of areas it would appear.

Chest 40" (was about 41, shirts are much looser)
Right Thigh 24" (should be bigger than left)
Left Thigh 24 1/2 "
Right Bicep 13 "
Left Bicep 12"

I've also lost about 2.5 Kg or 5 pounds in the last month

I have sore, aching muscles in all of these areas but they are still functioning. I've been getting up early to go for walks as they help with my legs and enjoying watching the sun come up. Something I wish I had been doing a lot longer now.
 
Be careful about self-diagnosing atrophy. Doctors are trained and can diagnosis atrophy, but different measurement sizes on limbs is NOT necessarily atrophy as a potential ALS symptom. Lots of other things are more likely than ALS, but again, the smaller muscles could be due to a change in your activity routine and not necessarily atrophy, especially If your GP didn't diagnosis atrophy.
Best wishes,
Tracy
 
Please delete my previous post. The measuring wasn't done in the same manner.

Apologies, this was completely unintentional.
 
Owl, don't sweat ALS. Those symptoms could be other things that are much more common. Get the EMG, for sure. It looks for other things, not just ALS. And yes, an EMG would pick up ALS even before any symptoms were apparent.

I measure myself regularly and get some wild swings due to water build up and even standing a lot during the day. Your measurements didn't say atrophy to me.

Let us know how it goes. In the meantime, don't sweat ALS. I just don't see it.
 
Owl, don't sweat ALS. Those symptoms could be other things that are much more common. Get the EMG, for sure. It looks for other things, not just ALS. And yes, an EMG would pick up ALS even before any symptoms were apparent.

I measure myself regularly and get some wild swings due to water build up and even standing a lot during the day. Your measurements didn't say atrophy to me.

Let us know how it goes. In the meantime, don't sweat ALS. I just don't see it.

Hi, thanks for the kind words. I went to the Dr today and she has said I should wait for a Neuro appt. Her reasoning was that without clinical weakness I would go into a very long waiting list, a year+. She doesn't see any atrophy and even though my muscles are tired she suspects I have an imbalance in chemicals due to panicking about this for the last 2 weeks.

I know some people may or not have spasms in both legs as onset but she hasn't seen anything like happen with her patients (she has had multiple) where the spasms jump from one leg to another, then into an elbow within a few weeks.

I'm not saying I have/don't have anything but I have agreed to give her 2 weeks to review my progress. In the meantime I'm trying to destress and just focus on positive things.
 
Hi there, I thought I would post an update. Following my visit I was given some tablets to help with anxiety and muscle relaxants for the pain in my calves and the front of my knees.

I've now noticed my tongue is doing very weird things, like I have worms crawling across it. I have an appt with the GP this afternoon but I have read up on onset Bulbar and it fits my symptoms based on the swallowing problems I've had for the last 6 months. Its a sad sad day for me; I'm really not coping at all.
 
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