Strange Symptoms going for long time!

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AnitaDublin

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Dear All,

First of all thanks for your precious time. Just wanted to hear your opinion as i'm a bit lost at the moment. I'm 29 with medical history of GERD (caused by H. pylori) and eczema. Family history of Alzheimer's and a ton of auto-immune diseases including RA, Osteoarthritis, Lupus, vitiligo and Hashimottos.

My story began with unexplained lower back pain and even had an episode of excruciating shoulder nerve pain that doctors could not find a cause for (back in 2014/15) A couple of months after this I started having perceived not clinical weakness in both of my arms/hands then followed by all over the body twitching and general fatigue. I did not pay much attention to the twitching as I thought It was quite normal but saw my G.P as I thought it might be CTS. My G.P freaked out when she saw the twitches in my arms and sent me off to a neurologist.

Neurologist at St Vincent's Hospital in Sydney did a clinical exam and said it was unremarkable and suggested It was anxiety or a metabolic disorder (nothing found so far) and requested a brain/spine MRI and a ton of blood work just to be prudent, which were clear. He was not concerned about the twitching and did not think EMG was necessary so I didn't push for it, as...well, he knows his stuff and I did not want to be taken as an anxious patient (AKA I'm afraid of needles).

My father is a retired G.P in Colombia (where I'm originally from) so when I told him my symptoms he freaked out as well and asked me to go home to get to the bottom of it. So I went and saw a neurologist, clinical was good and he repeated all the MRI's including cervical and lumbar and a ton of bloodwork, He also ordered and NCS and EMG. Nothing was found and neuro was a bit confused so suggested perhaps to see a rheumatologist to consider CFS or Fibromyalgia.

Rheumatologist did not find anything on the blood work but noted that I was quite stiff around my joints (they crack a lot) and was not too sure on the fibro/CFS and ask me to follow up with the neurologist if needed. At this point I was quite sick of visiting doctors and decided to leave it and not think about this disease and took the attitude that if indeed it was ALS there was nothing I could do and I didn't want to know till something stopped working (I know a bit irresponsible of me), So I continue living my life despite the fatigue, twitches, exercise intolerance, intermittent muscle pain, lower back pain, cramps, post nasal drip/Globus sensation on throat.

Fast forward 3 years and my symptoms escalated to another level. At the beginning of 2019 I started to get issues with the mouse at work and sometimes with the hand break in the car, like I'm not strong enough to pull it all the way up. I constantly wake up with both hands tingling (I know this points away from ALS) and with some dull aches on my lower back, neck and hips, my legs muscles feel like they are inflamed or something and ache as I had run a marathon and legs feel wobbly, I have tremors on all fingers and my hands shake badly when I hold things, up to here I was not too concerned as symptoms fit the fibro possibility.

However what it scares me now and made me think of ALS again is that around May I started to get a tingling sensation and spasms on my throat that freaked me out and tiny twitches like a single one around my lips, tongue, jaw, chest and neck area. My throat gurgles every time I drink liquids and have excessive belching with intermittent regurgitation, my ears are constantly clogged as well.

Muscle fatigue has increased so much that I find it hard to walk more than 100 mts without rest or stay on my feet for more than few minutes as my lower back start to ache and my legs get weak. Balance is worst than ever and have lost lots of muscle around my neck, shoulders and forearms. Also my breathing is quite shallow and I hear a popping sound on my lungs when I breath deeply. I have a terrible post nasal drip that does not go away and my voice it's quite hoarse (noticed by others as I constantly have to pitch projects at work).

I saw an ENT Dr and He thinks it's acid reflux and put me on PPI's but they have not made any difference. I'm still waiting to see a neurologist as I'm now living in Ireland and the waiting list to see one is a completely joke here. I made the mistake of telling my G.P that I thought It was fibro and He kind of didn't take me seriously for the first couple of months and did not bother to investigate till I started to have terrible bouts of fatigue that would leave me on the floor (which I never had before) and had to cut my hours at work as I was falling asleep at my desk. G.P has done all type of blood work and it was all normal apart from a slight elevated TSH but not enough to start treatment. Brain MRI was clear and chest and back X ray as well.

My question is should I be worried? does it sound like ALS? I know young PALS are quite atypical but after 4 years of symptoms I would expect to be in worst shape by now if it was really this, isn't it? My parents are sick worried about my health and had asked me to come home again, but before I spend tons of money that I don't have going there I wanted to ask knowledgeable people like you that really know this disease if this sounds like ALS?

Thank you very much for your input. I pray that there is a cure out there soon, It makes me mad to think that is nearly 2020 and with all the technology advancement and still the mystery of ALS and other neurological conditions like Alzheimer's that are very close to my heart have not been solved yet. Soz for the long post, tried my best to break it up on paragraphs to make it easier to read for ye!
 

Nikki J

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It doesn’t sound like ALS to me. However if you feel compelled to get checked and are really in Dublin there is no need to travel. You have outstanding neurologists there including one of the world’s experts on ALS. She or her team are more than competent if a screening neurologist should see a reason to refer you ( though you have not described that here)
 

affected

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Finding hard to figure where you live as you talk about St V in Sydney.
Still that is no problem, I'm really sorry for the long history of problems you have had, but these symptoms are absolutely nothing like ALS, not even close. Your exams and tests also point completely away from ALS but the diagnoses they are thinking of leaning towards sound like matches - CFS or Fibromyalgia. So glad you really don't need to be here and I truly hope you find some answers soon.
 

AnitaDublin

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Hi Nikki, Thanks for your response. I have an appointment with a Neurologist (Dr Ronan Walsh) I believe He is a neuromuscular specialist but this is not till the end of November and I have been waiting for it nearly 3 months. Might I ask who is the consultant you are referring to?
 

AnitaDublin

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Hi Tillie, Thanks for your input. Yes I know it's quite confusing. I'm Colombian born but moved to Australia when I was a teenager and lived there for 10 years. I moved to Ireland nearly 3 years ago as my partner is Irish. I really hope it's fibro or CFS my poor mum & Dad would not cope otherwise.
 

affected

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Thanks for clarifying, it was confusing :)

I'm certain you will find it is something far less sinister than ALS. Add to that, how long this has gone on for, without any actual failure. Instead you have body-wide vague things you are noticing and reporting. This really separates things out as ALS is a disease of the nerves, not all these other areas of the body. It progressively moves through the body, but it doesn't just cause vague sensory feelings to move through the body. It causes parts of the body to fail, to not recover, and then more parts to fail.
I know that may not relieve your concern, but once you have results from a neuromuscular specialist, please do let us know. Until then the more you can do to keep your general health up, both physically and mentally the better. Coming here won't do that for sure.

Eat well, exercise, sleep, hydration, all those basic things are far more important now than you might credit them for. I do wish you all the best.
 

Nikki J

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I looked up your doctor who appears extremely qualified so please trust his opinion and I am sure he will rule out MND. Please let it go after that

the famous Dublin professor is Orla Hardiman but you won’t need to see her
 

AnitaDublin

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Thanks for the advice Tillie I'm currently working on getting any deficiency issues I might have that don't show up in bloods with the help of a functional medicine doctor. Hopefully addressing those issues will do the trick! I see you are in Australia...oh boy I miss that country more than anything! enjoy the good weather from rainy Dublin.
 

AnitaDublin

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Thanks Nikki, will definitely run off the doctor's office and will never look back if I'm given the all clear. Just as I did over 3 years ago till unfortunately my symptoms started to get on the way of my normal functional day few months back. Appreciate your time, best of luck!
Will post the results once I see Dr Walsh.
 

AnitaDublin

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Hi All,

Just a quick update. Ended up in the ER a couple of days ago as I lost my balance while walking from the sitting room to my kitchen and fell and had to go to get stitches on my eyebrow (not sure how I managed to not cover my face). While I was there given my medical record a screening neurologist saw me and did a quick neuro exam (Mostly for sensory I think). He concluded that while my balance is not great He did not find clinical weakness or abnormalities on my reflexes (which is great). However when I asked him about a dent I have on my left wrist and hand if that was atrophy, he examined it for few minutes and said yes there is a bit of atrophy there but added that If It was atrophy due to MND my hand would be partially or totally limp or He would have noticed clinical weakness by the time there is atrophy. He said it could be a pinched nerve on my neck or shoulder and to follow up with the Neuromuscular specialist for further testing. Don't want to be a pain on the butt, I trust Doctor's opinion but wanted to ask if the atrophy conclusion sounds right? The body wide twitching, overall weakness + confirmed atrophy combo has me a bit down to say the least! Thanks in advanced.
 

affected

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He is right.
Balance issues are not part of ALS either - failure of muscles needed for walking cause falls.
You are still not describing ALS.
You do not have clinical weakness, so saying you are weak all over is not the same thing.
All the best. Again wait until you see Dr Walsh and post results then which I am sure will be as clear as this exam was.
 
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