Reluctantly Posting my symptoms

[Oscar7]

Thank you for you reply Laurie

The breath test results where checking my lung capacity. I'll get some more info on the actual numbers. All records are kept on my PCPs internal computer database.

The first anti depressant Zoloft definitely messed with my mental space and excacerbated my symptoms the scariest one was chewing tough meat I really struggled to chew. I'm assuming since my chewing has returned normal that a sign away from als??????

Also during this Zoloft reaction my rigt dome diaphragm and abdomen were in a lot of pain and had a burning sensation at one point.

Since switching to Mirtazapine and the Valium I feel mentally much better. I'm currently weaning myself off the Valium and I hope that clears up some of the weakness and tired feeling.

The stiffnesss in my hand and what I feel is slightly concerned about, it almost like what I think arthritis would feel like. I'm also getting aches and pains all over sporadically and some burning feeling in muscles when used for simple tasks. Again does this lead away from als???

And yes I'm asking hard question if myself and my PCP who refuses to even entertain the idea of als.

Appreciate your thoughts Laurie thank you once again

 

[ShiftKicker]

Aches and pains are a normal thing. Muscles can be tense when you're experiencing stress. I would hazard a guess that you are hypervigilant with regards to your body and symptoms right now due to your worries of having ALS.

The improvements you are experiencing do point away from a degenerative disease such as ALS. Continue working with your doctor to track down the source of your symptoms. Don't push your doctor to stick to exploring ALS- joint pain and burning muscles are sensory issues with a variety of causes. With regards to meds that affect your CNS- it can take months to fully rid your body of side effects.

Best of luck

 

[Oscar7]

Thank you so much for the input. My concern isn't for me it's more for my wife son and child on the way and what an impact me not being around would be, so again thank you for your valuable time in responding.

Your hit the nail on the head with the hypervigilant to my body at the moment, I notice every little thing that's going on.

My PCP isn't even considering anything neuro let alone als which is annoying me a little but I have Much trust in him which is comforting.

My concern is my left hand as I feel as though it's feeling less co-ordinated and fingers taping are not as quick as it was even last week. Operating my camera which is my profession I feel a lot more clumsy on my left hand the last few days.

I'm wondering whether I demand my PCP refer me to a neurologist or just continue with the ignorant approach

 

[Oscar7]

Hi Sorry to bother your again, but I've had my symptoms persist, I know this must be frustrating for you to respond to people like me but I'm just seeking your opinions please.

My symptoms as of today

-constant Fasciculations all over over body, even my sphincter at times has been twitching which in a weird way gives me comfort as I know that's one of the muscles spared by this awful disease.

-feeling of weakness on the left side of body limbs it feels weird to walk I feel off balance

-left forearm muscle mass 1 centremetre smaller than my dominant right side.

-stiffness in left fingers

-right scapula back pain for 4 months now

-right dome diaphragm pain for 7 months

-stiff neck

-dispahgia with foods still not an issue with liquids.

-my co-ordination is still off

-my speech in my opinion has slowly been deteriorating when i speak when having to think but seems fine when I read something that is written down.

- I can still do everything their is no FAILURE to perform certain tasks as is mentioned in the stickies it just seems as those my muscles start shaking when exerted even a smile my lips shake

My doctor had sent me for an MRI of the cervical spine. These symptoms have persisted for over a month so he retested my upper and lower reflexes babinski included and said he said they were all normal.

If reflexes included babinski are normal does that pretty much rule out ALS?

He is contemplating sending me to a Neurologist, should I see one?

Thank you again for your responses in advance

 

[Atsugi]

Oscar, you’re under great stress. I know that feeling really well. Stress has given me a lot of pain, rigidity, tears, and bad digestion/excretion problems.

And I think you're fully aware that most of what you posted is not at all ALS.

You said once that your PCP isn’t referring you out, and later you said your PCP was considering it. That’s a little weird. Doctors tend to make decisions immediately upon being presented with the relevant data.

“Demand my PCP refer me to a neurologist…”??? If you don’t trust your PCP, Oscar, get a new one.

“-constant Fasciculations all over over body, even my sphincter at times has been twitching” This is not typical of ALS. It is famously a reaction to stress.

“left forearm muscle mass 1 centremetre smaller”
This is really common in healthy people. Several centimeters often happens.

“If reflexes included babinski are normal does that pretty much rule out ALS?” No. ALS doesn’t require babinskis. It’s is just one clue of many.

He is contemplating sending me to a Neurologist, should I see one?
You should follow your doctor’s advice or get another doctor.

It’s notable that you’re still seeking the opinion of strangers who have never seen you, instead of listening to a trained and experienced medical doctor who has examined you.

Frankly, I think that every minute you are looking at ALS is a minute you wasted because you’re not looking for other diseases.

 

[Oscar7]

Thanks for the response Mike, really appreciate your time.

This excerpt below is from a retired neuro in response to another health anxiety sufferer in regards to the fear of MS. I found it on the n more panic uk website forum which has given me a lot of perspective and may be a help for some DIHALS people thinking about posting

"It's important for you to acknowledge that clinical diagnosis, particularly where neurodegenerative diseases are concerned, is quite complex and under no circumstances can accuracy of such a task be accomplished by attempting to draw subjective comparisons between the symptoms you feel and some list of clinical findings consistent with Multiple Sclerosis. I can tell you that with a great deal of confidence and certainty because I'm a retired neurologist and was in practice for more than 40 years.

The case with absolutely all neurological disease is the specific company that certain symptoms keep, or in other words the specific presentation of very specific symptoms known in clinical medicine to be distinguished from other conditions. You make no mention of a single one of these specific caveats which would suggest the possibility of MS.

Self-diagnosis can be the devil's own quill in persons with health anxiety, for the more apprehensive they become that their summations are accurate the more anxiety is produced, followed by an increase in somatoform or physical symptoms which only serves to reinforce their notions. It is a cycle that can be very difficult to break and it's critical for you to realize that the reason for such resistance has to do with the development of a specific type of fear that suggests a threat to survival.

This type of perception causes the brain to respond in a very particular manner that is genetically pre-wired in the brain to identify and overcome the threat such that feelings of safety are re-established. Again, this is an innate survival response induced by the brain and it's the very process which causes persons to feel compelled to confirm their suspicions and because it feels natural, the individual is often convinced by the "gut" feeling that their suspicions are accurate. In actuality, the exact opposite is most often the case and efforts to self-diagnose are far from the requisite accuracy.

Indeed, anxiety can induce physical sequelae very similar to some neurological diseases and the reason for this is quite simply that both anxiety and true neuropathology invoke changes upon the one and only existing nervous system. Thus, the layperson looks directly past this obvious fact and instead is driven to make associations which by their interpretations, seem completely rational and substantiated "

 

[Oscar7]

Hi all,

Been doing my best to keep away from these forums but my anxiety is really simmering underneath the meds which IMO only mask the surface.

I have a quick question regarding a predicament with neurologist wait time. My doctor referred me to a Professor Alistair Corbett who is apparently very good very experienced but I have to wait until June 19 or alternatively I can go to the private clinic at Macquarie university with a less experienced neurologist but in a well renowned clinic which head is Professor Dominic Rowe who is heading up the clinical trials for copper and triumeq on als patients.

Once again I appreciate the feedback

 

[Oscar7]

I really didn't want to post but am struggling

Had an MRI of the cervical spine, foraminal narrowing and osteophyte but nothing major.

Had the endoscopy for the swallowing issues,
Result was some reflux disease localised to one area but again nothing major.

Blood test for Lymes disease came back negative

But liver enzymes and CGT were high

I'm seeing the neurologist on Monday, I'm terrified beyond belief. My symptoms have persisted. I've read Laurie sticky and am following it fastidiously

Things feel heavier I get pain in joints, muscles arches of my feet, in particular the right dome diaphragm and right abdominal muscles. My job is quite physical so I find myself choosing options that are the least labour intensive. I feel like I'm dropping small light weight things more often. I haven't dropped a plate of coffee mug

Ive noticed lately that my clothes feel looser, my jeans around the thigh area are looser on both sides, which is weird because I've actually put on 3 kgs since the start of this year. This forearm discrepancy along with the fasciculations messes with me so much.

Can atrophy occur bilaterally and symmetrically in the thighs and calf muscles??????

My pregnant wife wants to take the day off to come and support me, I don't won't to put her under any duress.

In your experience should she come with me???

I'm hoping he tells me your a Health anxiety idiot 99.99% sure it's not ALS and thank you and doctor google for helping me put my kids through private school.

I've pretty much convinced myself I have this monster if I'm being honest with you all.

Your thoughts would be greatly appreciated, I'm still holding onto your constant wise words of FAILURE which I feel has not happened things just feel heavier and harder to do.

 

[Atsugi]

How's therapy going?

 

[Oscar7]

How's therapy going?

In answer to your question therapy is definitely helping to delve into things that have led me to this moment in time in terms of my mental health. It's definitely beneficial, I would recommend all the people with anxiety and in particular health anxiety.

Thanks for responding Mike, I know you guys are busy helping PALS and CALS with their journey. I don't want to be that stupid guy taking up your time but there's something not ok with me physically I'm just not the same person I was 7 months ago. Do you have any opinions on my questions from the above post?

Thanks again Mike.

Any other posts would be greatly appreciated

 

[Atsugi]

Hey, Oscar. I went back through all your posts to consider each item.

Right now it's Wednesday afternoon in NSW, so I guess you mean you're seeing the neurologist about five days from now.

(That's part of your problem. Down in Australia, you guys go around the other way, right? It's October in Sydney, right?)

Seriously, I feel for you, but I don't see any ALS there.

You're a mess, physically and emotionally. I had that kind of thing, too, a while back. It sucks. But ALS is a really specific problem in the brain. No matter what you read on the posts here about twitches, swallowing, or anything else, there is only one thing that makes it ALS--the motor nerves in the brain get destroyed and the corresponding muscle lays limp and useless from then on.

Whatever the neurologist says, accept it. But there is something else I want to say to you, really. This is much more important than your life.

I want to say something about your wife and child and one-on-the-way.

I've got kids. I helped them grow through pre-school, bullies on the playground, winning and losing on the pitch, birthday wishes and their mom dying. Now they're in college and I found out that they continue to be my little boys. I worry every day, and I'm really very happy when I see one of them come over for dinner.

That's the focus, Oscar. Each hour, each day, stay focused. They don't know and they don't care about your health concerns. They need you, here and now. So that's my only advice to you--focus on the love, focus on the minute. Get it right today and tomorrow will take care of itself.

 

[Oscar7]

Hey, Oscar. I went back through all your posts to consider each item.

Right now it's Wednesday afternoon in NSW, so I guess you mean you're seeing the neurologist about five days from now.

(That's part of your problem. Down in Australia, you guys go around the other way, right? It's October in Sydney, right?)

Seriously, I feel for you, but I don't see any ALS there.

You're a mess, physically and emotionally. I had that kind of thing, too, a while back. It sucks. But ALS is a really specific problem in the brain. No matter what you read on the posts here about twitches, swallowing, or anything else, there is only one thing that makes it ALS--the motor nerves in the brain get destroyed and the corresponding muscle lays limp and useless from then on.

Whatever the neurologist says, accept it. But there is something else I want to say to you, really. This is much more important than your life.

I want to say something about your wife and child and one-on-the-way.

I've got kids. I helped them grow through pre-school, bullies on the playground, winning and losing on the pitch, birthday wishes and their mom dying. Now they're in college and I found out that they continue to be my little boys. I worry every day, and I'm really very happy when I see one of them come over for dinner.

That's the focus, Oscar. Each hour, each day, stay focused. They don't know and they don't care about your health concerns. They need you, here and now. So that's my only advice to you--focus on the love, focus on the minute. Get it right today and tomorrow will take care of itself.

Thank you so much for your reply Mike.

I'm actually in North Queensland for work covering a category 4 cyclone or what you Americans call Hurricanes. Probably not a good idea in my current state but I'm trying to get on with life as best I can at the moment.

I'm riddled with guilt for my wife and son that I'm in this current state. They are everything to me and more, we have such a wonderful little family that's about to grow and I wish I could just not be in this mental space.

the experiences you describe with your family is what I really want to experience myself. I guess that's what's so terrifying for me, to not be there for those beautiful moments, those life lessons, I want to be their most in the hard times so they can rely on me. I'm just so scared, I'm sitting on the bed of my hotel room crying when I read your post.

I will accept what the neurologist says that I can promise you.

I'm going to again do my best to stay off this site until Monday 11am Sydney time which would be Sunday your time I guess.

Thanks you so much Mike, this site is very lucky to have people like you who could've easily run away from anything and everything to do with ALS, which would be the completely understandable reaction but your on here helping people with your experiences and knowledge. I don't know you Mike but you sir are a good person.

 

[Atsugi]

" I don't know you Mike but you sir are a good person."

Yeah? Tell my ex-wife!

 

[Oscar7]

Update:

I went to the neuro today at Macquarie Neurology clinic. Saw Dr Omar Ahmed and he put me through the usual strength and reflex test throughout the hour. He told me clinically I can't find anything to lead me to suspect MND(als) which is great news on my part but he did send me off for significant list of blood tests and asked why my Liver Function test numbers hadn't been looked at more closely by the GI. He didn't really want me to do an EMG/NCV but I told him I'd prefer to completely rule out all fears. So I'm doing the EMG on Thursday.

I'm assuming some thing would've shown up on my clinical exam if I had ALS?

Cheers guys hopefully won't be bothering you for too much longer.

 

[Oscar7]

Sorry to double up on posts but he also prescribed me Gabapentin/Neurontin for the twitching.

Interestingly the Drs told me his wife who also is a neurologist went through the omg I have MND because of twitches which made me feel a little less stupid if a trained Neurologist can throw logic and years of training out the window and be in the same rabbit hole alot of people with health anxiety go through.