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Cadabra

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Dear all,
Thanks for the wonderful job everyone is doing on this forum. It is really helpful to those of us who know nothing about MND.

This is my story.
In November 2020, I started having muscle cramps on both legs, especially when resting. This was followed by extreme fatigue and whole-body muscle twitching ( legs, forehdead, arms, ths). Later, I started having hand tremors or shaking. I went to see my GP and hand some blood tests and found out I was moderately deficient of vitamin D. He prescribed vitamin d supplements at 1000 iu twice per day. My muscle cramps and twitches stopped as soon I started taking the supplements. I was normal again.

Fast forward to March 2021, muscle cramps and whole body twitches started again. My legs are weak and my thighs are getting smaller/skinny. My biceps are fatigued and I have muscle cramps behind my thighs. I feel like something stuck in my throat but this is a feeling am used to because I have heard and acid usually creeps into my throat. However, yesterday I was eating a chocolate and it was hard for it to pass down. I don't know if it's my gerd or something else. My TMJ in my jaw are sore. I feel like my words are slurred but people are still understanding me.

I visited my GP and had MRI of the brain and spine and all was clear. Blood tests were also done and everything was normal including my vitamin d, calcium and potassium.

My medical history: I suffer from mild IBS and anxiety.

Could these be Als? My GP said he dosen't think it is. Why are my thighs getting skinny and flabby? Is it atrophy? My anxiety is up the roof because of these symptoms, especially since I had an uncle who died of Als.

Please help
 

lgelb

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Familial ALS is passed on by a parent, not an uncle.
You do not describe the onset of ALS, and all that you mention can be associated with stress, poor sleep, and anxiety, which often fly together.
If you are grinding your teeth in sleep (which your dentist can check), a mouth guard at night can help.
Your GP can track whether your thigh muscles are atrophying over time, and your level of strength. S/he can also help you better address your GERD.

Best,
Laurie
 

Cadabra

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Thank you for your reply Laurie. I greatly appreciate it. I should also mentioned to you that all these symptoms started after I got the news that my uncle passed on Feb 7. I was fine until that period. I don't think my anxiety would make my legs skinny, muscle cramps or aches or feeling like am choking or jaw pains.
 

lgelb

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I'm very sorry for your loss.

As to the role anxiety plays, apart from "skinny legs" that may or may not represent clinical atrophy (have your exercise/diet changed?), everything else you reported is subjective. And everything you listed has indeed been associated with anxiety in these forums, the medical literature, and plenty of real life.

The mind is very powerful and can trick us into believing we see/experience things that (1) we are not or (2) are not nearly as unusual for us or anyone else as we think. Anxiety is also associated with fragmented sleep, which can actually affect perceptions of pain as well as other experiences we are not used to.
 

affected

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I'm sorry for your loss.
Anxiety really can cause all those things, you can burn calories like crazy if you are anxious, and you often don't eat well or stay hydrated which exacerbates it all.
 

Cadabra

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Dear all,

two months from my previous post, I finally saw a neurologist at a neurophysiological center. He dis NCS on my upper and lower limbs and concluded all normal. He also conducted an EMG on my left bicep, left thigh and leg but all came back normal. He also said their is no visible or clinical atrophy of thighs. However , I’m still having leg and thigh cramps and generalised muscle twitches. Also, last Thursday, starting choking on food such as rice and my throat hurts. I feel like something stuck in my throat and after I swallow, I fewl pain in my chest and sometimes, I regurgitate food. Also, I get burning feelings on my tongue, wavy tongue and neck pains. I'm really scared right now. Also, mucus is also in my throat and have to clear it every other minute.

Could this be bulbar als? Do you think the neurological might have missed something? I should also state that I have IBS-M and reflux disease but they have never caused such issues.
 

lgelb

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Diseases often are stable and then progress. Your reflux and/or IBS could certainly be contributing to your discomfort no matter that a connection hasn't risen before. And anxiety certainly doesn't help reflux and digestion.

I don't think you have any ALS, bulbar or otherwise. The clean EMG in a symptomatic area puts paid to that -- fortunately!

I would keep working with your GP, and ask about a gastroenterology referral if needed.
 

Cadabra

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Thank you for shining more light on my situation. However, I'm really worried about my swallowing and my tongue. I don't think IBS or reflux would cause dysphagia or wavy and burning tongue sensations. And also cause my theaot to ache. I booked in an appointment to see my gp to suggest barium x-ray and check my tongue.
 

affected

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My husband was bulbar onset and did not experience what you report. Burning tongue is not a bulbar symptom. ALS is a disease that starts in the brain and causes nerves to stop sending signals to muscles.

You can suggest tests to doctors of course, but truly the better approach is to present your symptoms and ask the person with true medical knowledge (not ideas you got as a non-medical person playing with a search engine), what they think is the next step.
Then follow that advice - if that is more tests - have the tests, if it is medication - take the meds, if it is another specialty for investigations - follow that path, if it is counselling or lifestyle changes - take that advice.

Going in to a GP with a diagnosis in mind, and asking for them to send you on the path you choose can mean they find the answers much slower as you may be misdirecting them from where they would head.

All the best. Do let us know once you have a diagnosis and I hope you find answers soon.
 

Cadabra

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Thanks to everyone for their inputs. However, my symptoms have somehow developed since. I’m having jaw jerks at night when about to sleep. My lips , especially my lower lip seems week and both lips have slight burning sensation. My lower lip has become somehow flabby and I now drool in my sleep sometimes. I also feel jaw, chin and sometimes lip twitches. My speech is slurred but I don’t think people are noticing yet apart from the point we’re I occasionally have to repeat myself to people.

Also, since my previous post, I have had difficulty with swallowing solids. This started in may. Had a barium swallow on may 11 which came back normal and also had one in early June, which also came back normal . I will upload the result.

My thighs are still getting smaller (atrophy). My first neuro visit, the neuromuscular doctor said he didn’t see clinical atrophy of my thighs and in fact, both things are symmetrical and that atrophy is usually not symmetrical.
I’m confuse as my symptoms are some how progressing and I’m not getting a diagnosis. I’m really worried about my lips.
My uncle who passed away from als in February also had lip involvement. He couldn’t close his mouth and he has drooping lips. He had bulbar onset.
I’m terrified. Due to my fair, I e bought a host of vitamins that I read als patients are taking and I’m now taking them. Vitamin d,e, b complex, b12, q10, zinc, grape seee back, l lysine and l theanine. Nothing helps.
 

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affected

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I'm so sorry you still can't move past this fear. You know that every test comes back normal, and that you then get very anxious about things you are 'feeling'.
ALS is NOT ABOUT FEELING THINGS.
Please we just can't do anything more to hold your hand.
My husband was diagnosed in Brisbane at the Royal.
His symptoms really were not anything like what you are experiencing. We have some of the best ALS neuros in Brisbane, they know that you are not matching a single clinical symptom.
Whatever is going on, we can honestly do nothing more to help you with it. We will not say all these test results are wrong, nor that your experienced doctors are wrong.
Please see your doctor and get help, and join a forum that is designed for people in high anxiety.
Those vitamins of course won't help, they don't cure our PALS either, ALS is terminal.
 

Cadabra

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@ affected. Thanks for your timely input in my situation. I don’t know what’s causing my symptoms and with anyone, you would be anxious and be scared. My first neuro visit was at Corbett Neuropsychology in Brisbane by Dr Ventzi Bonev, a consultant neurologist and neurophysiologist. I know my emg and ncs are clean but I’m still having twitches and sometimes thigh pain at the back of my thigh. My lips and jaw twitches and they wasn’t twitching before. Now I have to concentrate before I can whistle. I’m now drooling I’m my sleep amd have a burning sensation on my lips. Unnoticed slurred speech by others and wavy or indented tongue. My biochemistry test results are normal, but I do have extremely high levels of IgE in the thousands. My gp don’t know why as I don’t have a parasite or skin disease. I have another appointment at The Wesley hospital with Dr Robert Henderson, another neurologist, next month. I think it’s natural for me to be scared or anxious. It’s been 9 months now going through this with no diagnosis or complete cessation of symptoms.
 

lgelb

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The expectation that you will have "complete cessation" of symptoms may be a misleading one. I would put a pin in that. As for a high total IgE, that is a very nonspecific finding that must be fleshed out by other testing, but it can reflect an undiagnosed allergy, so that might be a specialty to consult. Hardly ALS. I have no idea how/why you are jumping to that with overwhelming evidence against it. I am surprised that you are being sent to another neurologist.

As Tillie notes, you are wasting your money with supplements, and possibly skewing lab results.
 

affected

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Cadabra the thing is - twitching means nothing, not a single thing. Pains, and aches and drooling and burning - nothing at all to do with ALS. No one else noticing slurring? Again, I can assure you the first thing that would have happened, more than 9 months ago, would have been people asking if you are drunk in the morning.

Dr Henderson diagnosed my husband, I hope you will believe him, he is highly acclaimed.

In the meantime, stop googling, start living. You will never get the next month back, regardless of the outcome, so don't waste it on fear, supplements and google.

I'm really sorry you are going through all this, but after 9 months, honestly you don't actually have a single, clinically significant symptom, nor a test result that indicates ALS.
 
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