Advice Needed, Awaiting EMG.

Brain and nerves
1

I'll try to keep it as short as possible. Around 6 months ago I posted on here detailing some symptoms I had been experiencing. they included-Hoarseness (the first symptom I noticed around july),speech difficulties, weakness in arms and legs, nasal voice, severe fatigue, among many others.

These have gotten progressively worse since then, along with new symptoms.my bloodwork and MRI came backnormal, which has only convined me more that it is MND, specifically PBP or bulbar onset ALS. I'm having an EMG in the next monthand just wondered if anyone with similar symptoms who has had anEMG could give me thier opinion on the possibility of me having this.

Heres where I am now- the hoarseness in my voice has never left, I'm constantly clearing my throat and sound like I've got a blocked nose all the time. My speech Is really starting to trouble me,particularly when trying to pronounce words beginning with 'Tr' or 'Dr'..'trying' is coming out as 'chrying', 'train' is 'chrain'..my tongue just can't seem to produce the right sounds. Also my lips are involved, with 'm' or 'n' sounds. 'I'm going to my mums 'is 'I'm going to mmums', I can't separate the two 'Ms'.

Ive recently developed a constant tingling in both my hands,a bit like pins and needles.My cheeks have started to feel strange,especially when I try to smile. I say try because I'm finding it more difficult to make facial movements and expressions, also my lips come apart when i smile.

My chest is always slightly raspy/wheezy and sort of aches inside. I've developed a runny nose, particularly when eating hot food or when I walk somewhere it will willstart. Also might I point out in regards to the speech, pronouncing 'Th' (as in 'the', 'this&#39 I notice that my sinuses become completely blocked, in fact its incredibly hard to pronounce, something feels blocked nasally.My right eye stings almost all of the time and I've often got a weird tingling warm feeling on the right side of my face, usually above my cheek and temple. Obviously all of this is hard to get across in a few paragraphs but I need to vent somewhere. I've never been as depressed, angry and terrified in my life. I know what it is and I'm just waiting to be told.

2

I don't know why there's a smiley face in there, that wasn't intentional.

3

How did this come on? Was it an acute attack or slow progression? Has anything gotten better since it started? I am sorry you are having so much trouble.

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Hi. To the best of my recollection it first started around 6 months ago, with a change in my voice, although thinking back I do remember some months prior to that experiencing fatigue and muscle pain/weakness. For instance, when stripping the wallpaper one day I noticed that my shoulders would burn after a minute or so, even holding the phone to my ear would causethis burnand weakness. That could be completely unrelated, its the bulbar symptoms that worry me most, which as i say, started with a hoarse andnasal voice, thenslight speech problems that have gotten worse, and the facial palsy im having now. Apologies for my long replies, Ijust have so many symptoms.

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sorry, i forgot to say- I wouldn't say acute as such, more of a somewhat rapid progression over a 6 month period.

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First off, breathe.  Breathe in slowly, hold it, breathe out slowly, hold it, repeat.  You are on a well trod path that many people have been down.  Try not to expect an answer as to your condition, that is improbable.  It may be many months or even years before you get this settled down.  So the biggest issue is to take one day at a time.  Start a journal, and write out your questions for your doctor.  There are so many different conditions that can give rise to the symptoms you have, it is amazing.  I would want to know my CK levels, and I would want some thorough blood work, looking for markers for various autoimmune conditions that may give you a clue.  As bad as the symptoms can get, the human body is an amazing machine.  It tries to right itself.  Give it a chance.  I have spent weeks with new symptoms, certain I can not live another couple of days with it, and then the body makes adjustments.  Life goes on.  Stay alert, and be proactive.  Ask a lot of questions.  Ask for copies of your medical records, and keep them together.  Research what the results mean, and ask for follow up visits.  In between, keep breathing!

7

Thanks for your reply Jennifer, but I simply cannot share your positive and somewhat spiritual way of looking at things. Quite simply, If I do indeed have what I fear I have, then taking my time won't be an option, my time will be very limited. I've had all the blood work there is, all of which came back fine, aside from an ever so slight vitD deficiency. Mri scan- completely normal, which while some would consider that a good thing, with my symptoms it isn't, It just increases the likelihood of it being MND even more. I admire your way of thinking, but unfortunately my mind just doesn't work like that.

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I had lots of symptoms too so I certainly understand about that! I really hated the facial and speech problems the worst!! Hope you find out soon!

9

Can I ask what condition you were diagnosed with?

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Well, it would help you a lot.  I have mixed connective tissue disease with overlap, primary Sjogrens.  It has caused interstitial pneumonia (3 times this year) 22 days in hospital, has invaded my nervous system, and suffered over the holidays with vasculitis.  It is what it is, and most of these types of diseases have no cure and minor palliative care.  You unfortunately do not get a vote.  When you get one of these diseases, as you age, you tend to pick up more.  I wish you the very best, but especially that you can discern what is up to you and what is not.  The doctors do not have any cures or solutions.  

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Oh yes, your low Vit. D is suggestive of an autoimmune disease.  Need to take quite a bit of that, it can help.

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Many of your symptoms is the same as mine. I have an enlarged thyroid but most of my neuro symptoms are diagnosed as neurological b12 deficiency. Look up vitamin b12 deficiency symptoms and ask for b12, folate, ferritin and thyroid function tests 

13

Hi

Do you have a family history of mnd ? Please try not to panic as there are many conditions with solar symptoms. I had 18 months of similar symptoms, muscle fatigue, tremor, numbness, speech and balance difficulties etc. I had MRI brain scan, nerve conduction tests, chest X-ray, bloods, thyroid, DAt brain scan, barium swallow and so on. I am now waiting to attend a voice clinic but I am being seen by a neurologist who specialises in movement disorders. Finally in aug last year I was diagnosed with dystonia, dystonic tremor and myoclonus and am taking medications to control the symptoms ( there is no cure). 

I don't know what a EMG is for or what the other conditions are that you've mentioned. Seems it's a case of perseverance and tenacity in asking for referrals to different specialists. 

Good luck with your quest and try to keep strong x

14

Hi,

Keeping posts short is not really an issue, the more content you enter in a post is better from my own experience on these forums, and people get to know you better and how you feel over days and weeks. I am one such person that probably goes overboard with messages, and their lengths.

Am I missing something, have you not seen a Consultant Neurologist regarding your numerous issues? Your GP can refer you to a Neurologist for a better understanding. What you don't want is someone to say you have a certain disease and they are completely wrong, which can put a person like yourself in a worse state. A major point here is don't believe everything you read on the internet, what may seem like your symptoms can be completely wrong. I'm a slightly different case and my GP asks me what I think is wrong with myself which I have read on the internet, this is only because I have a huge pile of records at the doctors surgery and hospital. So what I tell you, do not take as gospel "so to speak", what I tell you is from my own perspective being under Professors of Neurology, Consulant Neurologists, Urologists, Oncologists and Epileptic Specialists.

From your initial aforementioned post it does sound like a form of problems relating to a single Neurotic problem, which you state has become progressively worse over the months. The trouble is you do not want to know what other people may say it is if they are incorrect, which does happen.

A lot of the symptoms you have mentioned could be a sign of numerous Neurologic disorders, I suffer from a few and going by your list you would be very close to mine which is Generalized Dystonia and Functional Episodes, and Epilepsy - all of which have a common denominator, the nerve system. Many people get my disorder mixed up with MS, it is nothing like it - but at a glance it would give that impression. I have lived with it for nearly 30 years, and in that time I have deteriorated from being able to walk normally to not being able to walk at all, and rely on my wife and a wheelchair, and that is the least of my problems. I have had cancer, and just coming out of remission next month, but was being tested for prostate cancer last month. I nearly died a few times from gangrene in my intestine twice, it's not a life I would wish upon anyone. I'm forever on medication at the moment 40+ tablets a day and 5 injections every 10 weeks. Blood tests are regular, checking for cancer markers and liver, calcium levels, etc. Pain, depression and anxiety are all associated with all this, I have managed to cope with my lifestyle, but it not been easy.

Best thing to do is get diagnosed correctly, mine took nearly 2 years to be diagnosed properly, and in the end it was by US Professor in Neurology.

Anyway, I wish you all the best - we all have to cope in our own ways, some of us have harder times than others, but we get there in the end.

Regards,

Les.

 

15

Hi Les,

Thanks for your reply and I am sorry to hear of your numerous and ongoing issues and can only say that I sincerely hope you will find better health soon.

To answer your question, yes- I saw a consultant neurologist around late august. The appointment was quite brief and a lot of my anxieties went unheard, I found the man to be most dismissive actually.

What he did do however, was firstly test my reflexes, which, I was told were 'brisk'.This had also been noted on previous visits to the G.P. around this time. He then examined my jaw reflex, which he appeared to struggle with as he kept insisting I relax my jaw, even though though I was doing. I think this reflex was absent. Also the babinski sign was unresponsive.

He arranged for me an appointment to Have an MRI performed, which came back normal shortly after. This was early november. Also around this time and again recently, I have had complete bloodwork done, I mean they tested for everything. Normal.Slight Vit D deficiency but that's relatively common and was within normal range anyway.

So obviously a lot of conditions,including MS, autoimmune diseases, thyroid problems, etc have now been ruled out, which, given my symptoms and how they are progressing, narrows it down considerably. I do certainly have it firmly planted in my mind now that it is most likely MND.

As I say, I am awaiting an EMG, which will tell me what I need to know regarding MND, but first I must attend an EEG, which I believe is pretty pointless and I'm certain that this too will return normal results.

Anyway, I will leave it there as my mind is so frayed I've genuinely forgotten the majority of what I've written so far.

 

16

Can I ask, did you ever find out what this was?  I have been reading this thread and wondering what happened?