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Oscar7

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Joined
Feb 26, 2017
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18
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
NY
City
Sydney
Ive been lurking in this forum for the last couple of weeks seeking reassurance as I really didn't want to waste anyone's time with my concerns. I've found it amazing and heart warming the selfless amount of time PALS spend responding to individuals. I'm a 31 year old male married to an amazing beautiful wife who is 11 weeks preganant and am fortunate enough to have a beautiful and healthy 18 month old boy who is th greatest thing to have ever happened to me.

during a work trip at the Rio Olympics August 2016 , we only managed a few hours sleep eqxh night for 3 weeks due to a heavy workload. We all got sick to varying degrees I was severely constipated which I believe was from dehydration and had a pain near we're you would think my gallbladder would be situtated.

by the second week I was taken to hospital by ambulance where ct scan of my abdomen where taken along with extensive blood tests along with Zika and dengue( I get a rash from gluten products which always scares doctors). All pathology came back normal apart from elevated LFTs(liver enzymes).

When returning to Australia I was extremely fatigued and just felt terrible and was concerned that something wasn't right is still has the pain accompanied by a burning sensation so as a precaution I went through blood tests, ultrasound and CT with constrast they a found a benign lesion in my liver and also told me I had a non alcoholic fatty liver. PCP told me there was nothing to worry about gave me some antibiotic antacids nexium along with a stern talking to about a healthier lifestyle to reverse the non alcoholic fatty liver. My blood pressure and heart rate 90-100bps where also quite high.

My mood improved instantly and over the next few months I was eating healthy dropped weight from 76kgs to 69kgs. However the dull pain never really subsided and is now accompanied by neck and trapezius pain. I find myself feeling uncomfortable in the right rib area when sitting in a car and laying down position.

I attend a physio therapist to try and sort this out which seems to no really alleviate the problem. He blames it on my posture and give me some back strength excercises.
All this time I feel fatigued and start to get minor muscle injuries from soccer which I hadn't had my entire life. I just didn't feel as though I was as strong at holding off players as I once was.

In December I started to feel more and more anxious as to why these pains hadn't subsided, resting heart rate was still over 90bps for months now and blood pressure was very high and was having fibrillation sesnsation near the esophagus and a feeling of nausea/heartburn along with feeling I'm short of breath I visit my PCP and explain my symptoms they then perform an ECG on my heart and say there are no abnormalities. PCP tells me it's stress and to practice mindfulness. I also get a follow up blood test and ultrasound and once again all normal, LFTs now within normal range due to improved diet.

Then over the Christmas period I fall into a depressive state triggered I believe by health anxiety and the bad prognosis of my pet cat from our vet. I was neither able to be happy or sad and have absolutely no joy in life, I was shocked that the happy vibrant energetic person who always looked on the bright side was gone. I went to my doctor and told him I needed to be referred to a therapist in regards to my mood.

My mood improves for 10 days and then another bad situation arises and I go into an even deeper depression than originally which i think I'm still in but not my mind is so exhausted that I wouldn't be able to tell you will any certainty. I get all these other symptoms perceived or real I'm not sure which had been around for a short time and some a long time and some have now subsided.

- right eye a bit funny as in blurry
- slightly blocked right ear started in the left
- right sided headaches
- Mid to short term memory loss
- Don't feel as sharp
- Really tight neck
- Shoulder pain
- Feeling in stomach is dread
- No appetite
- No sex drive
- Feel weak but still able to play sport

My PCP send me for a brain CT and once again results are normal.

I then visit a chiro who says my diaphragm is really tight and is able to apply pressure to the spot where this original dull pain came from. She tell me to do breathing diaphragm excercises which seem to of helped the breathing issues. I also notice I'm having a globes sensation in m y throat that feels as though things are getting stuck in my throat.

I then wake one day and feel as though my hands are numb and feel weak tingly especially my left, I then feel like my leg possibly left leg more is weaker especially when walking downhill. I go to my PCP who prescribed Zoloft, this is when stuff goes nuts. I barely sleep for three days and am completely wired and believe I have ALS due to the dreaded doctor google. I think of all the times I've been dropping my iPhone 6 and other clumsy moment, my diaphragm pain is a lot worse, im an absolute mess fasics all over the shop. I'm constantly Asking people if I'm slurring my words to which they all say no but 2 people have said I sound nasal and might be coming down with something.

I come off the drug and things calm down but random all over body fasics have continued. I'm prescribed sleeping tablets which help and then I'm put on mirtazapine which has none of the side affects of the other AD.

The thing that set me off was when I played soccer last weekend my legs we're fatiguing and shaking after ever little sprint. Not burning just trembling when sprinting.

I continue to be fixated with als where it's all consuming with doctor google, I check my income protection and life insurance policies to make sure my family will be looked after.

My last visit to my PCP has led to him exploring my thyroids. I hope to God that's what this is. He keeps telling my my reflexes are normal and it's all anxiety but I feel as though my mental symptoms have subsided and my physical ones are still here.

Symptoms that have reluctantly led me here as of today

-perceived weakness on the left side of body
-thighs tremble when running fast
-trouble swallowing
- perceived slight slurred speech
-feel weaker all over
-feel off balance
-cramps/pain in arches of both feet
-internal body tremors in the sternum
-fast heart rate
- loss of coordination

I hope to God that this is all just anxiety but my gut tells me it's not.

Thank you for your responses in advance and sorry for the long post
 
I have no idea how you wound up here. Nothing you describe sounds anything like ALS. You do however have a life altering condition. Anxiety is going to deprive you of your ability to focus on your growing family. Get it fixed, or regret missing out on a very exciting time in your life.
Vincent
 
I really don't see ALS in anything here. I'm pretty sure you know that though. Sounds like you've been exposed to a variety of things that can either individually or in combination cause you to feel quite ill. You are also taking meds that can affect the CNS and brain chemistry. I'm not sure if you took meds to prevent malaria during your trip to Rio, but things like that can cause you to feel poorly as well.

Keep working with your doctors- your symptoms must be worrying to you. It's really important to try to get to the bottom of your feeling poorly. I do not think you belong here though.
 
Thank you for your responses, I just left my therapy session just now and am doing my best to rid myself of these feelings. I would like you to know your words have given me some comfort. I've always been quite a strong person so the last 6 months mentally and physically have been an alternate existence.

I wish you all happiness in your lives, your all an inspiration and the work you do on these forums will in some way help to one day find a way to tackle this bastard.

I'm am however still very concerned and will continue to work through this with my PCP.

Anyone else's opinion on my symptoms would be greatly appreciated.

ox
 
Thyroid and other metabolic issues are certainly possible from what you describe. But since everything seems to date from Rio, I wouldn't rule out some kind of virus or insect vector and would consider redoing some bloodwork, perhaps under the care of an infectious disease specialist.

But whatever you are dealing with, sleep, diet and non-strenuous exercise (i.e. something other than soccer) are things to focus on as the diagnostic process proceeds. The good thing is that as others hae said, this doesn't seem like MND.

Best,
Laurie
 
Thank you for the response

I guess the thing that led me to this mnd possibilty was three key factors
-right sided diaphragm pain
-perceived leg weakness and hand weakness (I have no proof it's clinical it's also my non dominant side)
-fasics
-swallowing issues
-my own perceived slurring (no one has noticed)

I'm seeing my PCP on Wednesday who also was a psychologist before deciding to be a GP. He has been a real help through this process and keeps telling me that I shouldn't be concerned about ALS/MND which relieves my concerns for a while but still rears its ugly head.

I've always had hypnagogic jerks and I'm pretty certain fasics most of my life. I also believe I have restless leg syndrome, I really find it hard to keep my legs and hips static for long periods when at rest.
 
I don't diagnose people--none of us will do that over the Internet--but I will make an observation.

First, nothing you wrote in your post makes me worry about ALS. I know some websites say that twitching happens in ALS, but it happens in everything, so that's not diagnostic of anything. Forget ALS.

You're over thirty, working hard (even going overseas), got one youngster and another on the way, and you just lost your feline friend. RLS is preventing you from getting a good sleep. It's been a tough year.

Good luck to you, your doctor, and your therapist. And I repeat, forget ALS.
 
Sorry to bother you again but I have a couple of further questions if you could be so kind. Your reassurances have calmed me down a lot and again I greatly appreciate the help your providing.

In terms of my swallowing issues I seem to have no problems with liquids it's more grains of rice chalky pills that seem to get stuck and need water to wash down my throat. If I burp some of this food particles comes up with the burp.

In terms of my perceived slurred speech I feel like I have to concentrate to say words clearly, im trying to be positive and put this down to the Valium I've been taking twice a day for the last week.

The weakness in my legs is shaking/trembling when highly exerted. I've also had right back trapezius/shoulder pain for a couple of months now which hasn't really improved with normal therapies

In terms of Fasics, they are all over my body and don't have any sort of consistency in one particular muscle.

My other concern is my right dome diaphragm which I have had a dull pain in for this past 6 months. It seems to get worse when I stretch it out which caused some breathing difficulties. At times I've had shortness of breath and when readig a book for long periods to my little guy leaves me exhausted however this has improved with breathing excercises.

My general fatigue and feeling that my muscles are getting weaker and clothes are getting loose around my thighs which have always been really chunky and where really tight in the past. I know I've lost weight but surely to completely change the shape of my body. Stairs seem to be more laboured and sometimes my left knee sort of gives out.

Also all these symptoms during a 6 month period would be really rare I assume. Thanks again for answering in advance. I feel more reassured than yesterday from your responses but felt my intial post wasn't specific enough with my symptoms which lead me to my self diagnosis of als. After re reading my post it seemed as though I was Not directly explaining my symptoms.

Thank you
 
That last post was important, Oscar. You've convinced me that, for sure, you really are not describing ALS.
 
Mike could you please explain why my last post led you to that belief in regards to als?

Mike I'm sitting in my car in tears feeling very guilty to be wasting your time and the compassion that you've shown for a person which time is the most precious commodity of all. I'm truly sorry and at the same time want to thank you
 
Oscar,
Nothing in any of your posts leads me to believe ALS is even remotely possible. I would take Laurie's suggestion and see infections disease specialist along with someone who can help with depression and anxiety. Depression, in and of itself can cause all kinds of physical symptoms, many of which you describe.
 
You described swallowing problems differently than what PALS have described to me.

Ask your doctor for a swallow study.

I don't consider speech to be PATHOLOGICALLY slurred until other people say, "What?"

"The weakness in my legs is shaking/trembling when highly exerted."

With respect: No shit? When highly exerted, everybody's legs shake and tremble.

"I've also had right back trapezius/shoulder pain for a couple of months now which hasn't really improved with normal therapies"

This is a really common complaint with non-ALS people.

"In terms of Fasics, they are all over my body and don't have any sort of consistency in one particular muscle."

ALS twitching tends to be local.

"sometimes my left knee sort of gives out. " Sometimes? ALS is a full-time thing.

"my right dome diaphragm which I have had a dull pain in for this past 6 months...seems to get worse when I stretch it out ...shortness of breath and when readig a book for long periods to my little guy leaves me exhausted however this has improved with breathing excercises...My general fatigue "

All in all, reading all your sentences confirms to me that you're not only NOT experiencing ALS, but also you don't know what is ALS and what isn't ALS.
 
Update

Laurie and Mike im amazed at your commitment in these forums, you guys deserve recognition for the work you do and I hope this is the case.

Thank you all for your kind support, I'm still in the mind frame that I have something wrong with me hope to God its not als. I know my body I've always had amazing powers of recovery and usually am someone who is super positive about everything and believe in the goodness in this world but I just know something is just off.

I've been to my PCP and have been referred to a gastroenterologist for an endoscopy to figure out why food and tablets are getting stuck in my throat and especially apples which seem to sit at the top of my throat and come up if I burp . As I've said before liquids don't seem to be an issue I cough sometimes with water but I'm sure everyone human being does occasionally, especially someone with anxiety and OCD issues. Dull ached in my left hand and arm has increased the last 2 days and my left thumb and finger seem to be less coordinated when typing and doing things ordinary tasks.

The right dome diaphragm pain has continued and radiates to my back and scapula area. My liver enzymes has gone through the roof as I've been eating whatever I want to make myself feel better. my doctor is thinking of doing a liver biopsy as it's strange how quickly my liver enzymes react to a 1 week period of poor eating. I'm getting tested for lymes disease. Laurie you recommended the infectious disease expert so I'm starting with that. I understand this disease can affect the liver.

Left leg has continued to feel weak and less coordinated. The arches of my feet have cramping feelings.
Thyroid tests came back 'as normal as I've seen' According to my doctor so that's now been ruled out

Did a respirimetry test and result were mixed even once ventilan was administered. Something about the ratio between peak force and volume being off.

The all over body fasics I mean all over random for short bursts. Large muscle twitches seem far less common it seems as though it's smaller fibres have continued even though I feel I'm in a better head space and am weaning myself off the Valium. I feel like while the Valium makes me feel good but it's making my CNS play up even more as in feeling off balance and clumsy as you pointed out Laurie is a possibility which in turn feed my fears of als. I just can't understand why I'm so fatigued I'm sleeping better now than I have in years due to the mirtazapine anti-depressant but still find myself lacking energy.

My left index finger tremors intermittently similar to something you would see in a early symptom Parkinson's patient now I know at 31 I don't have Parkinson's but was wondering if tremors in individual digits are a important sign. Also joint wrist pain, my logic tells me it's my constant overuse of the left hand to prove it's still working.

I had a question Laurie since you seem to be very much across atleast anecdotally trend of people's different symptoms is there any other advice you could offer for me to relay to PCP. I'm sick of all these blood tests and scans and just want some answers.

I find myself fighting back tears when I spend time with my son and can't speak with my wife about the future especially in regards to our 12 week old baby growing inside of her. I'm trying to spend as much time as possible playing with and enjoying their company and telling them how much i love them. So thank you for that advice on concentrating on what's important as well guys it's been a great help.

Appreciate anyone's input

Again thank you for you time
 
Sorry guys just realised I'd posted twice as I was in the process of writing it and had to do something and copied it but must of hit reply please disregard the first post it wasn't very clear
 
Hi, Oscar,

Glad to hear you are getting more objective testing to confirm or deny specific abnormalities. To that point, can you be more specific as to what the report was for the respiratory testing? You should keep copies of everything anyway, against the possibility that someone loses something or fails to pass it along. Likewise, it is important to differentiate what is objectively wrong to a gastroenterologist vs. what anxiety can bring to the fore.

Are you still taking Nexium? Zoloft? Each can have long-term effects. Often the first antidepressant isn't the right one and people need to switch. If you're still depressed and anxious, I would ask about that.

As for Valium, I guess you know that taking any "downer" 2x a day isn't going to be doing your strength and coordination any good.

So my major question isn't for your PCP -- it's for you -- can you provide any more insight on where docs have found something that is more than what you simply feel? Knowing that you have a liver lesion and that is where your pain began, have they ruled out a more serious lesion than what they first thought? Have they/you considered that your pain from that has simply skyrocketed your anxiety and thus other symptoms?

It sounds like you are taking some positive steps, but to get to the root of your problem will require continuing to ask hard questions of the docs -- and yourself.

Best,
Laurie
 
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