Awaiting diagnosis - I have every symptom

[Sparkles84]

Hi.
I'm 36 and since late last year I've been having symptoms of what I now know to be ALS/MND. Actually I was diagnosed with fibromyalgia 2 years ago but I reckon it was the start of this. I've got weakness/stiffness/pain in all muscles on both sides of body with the right being weaker. Muscles have atrophy on the right and it's now affecting left too. I've got bilateral facial weakness, right sided eyebrow droop, mouth weakness and now tongue has started to tremor all the time. My sternocleidomastoid and chest muscles have tightened to point of feeling like I'm being strangled and suffocated. Breathing is hard through my mouth because chest muscles are so tight. It's been hard to put my right foot down when walking. The muscle between my thumbs and forefingers has disappeared on both hands and is just excess skin. Hands are constantly shaky. Also had difficulty swallowing as right side is so weak. I didn't realise what was going on until things got really bad and ended up at a&e multiple times with no answer. A lot was out down to anxiety. I'm finally under the care of a neurologist who is doing an MRI to rule out other causes but from what I've read I've got all the classic symptoms. I'm so scared. Was hoping by some miracle I don't have it but it's unlikely. I have no family history of this awful disease. Of note I have a very rare inner ear disorder involving the semicircular canal which is usually genetic or following brain injury. No one in my family has it. I've had debilitating symptoms of that since 2004. Can't believe I've got another rare illness at such a young age. I had MRI back in 2017 because I've had brain zaps for many years. Now I know MRI doesn't diagnose motor neurone so wouldn't have shown it anyway Thank you for reading. I know its a lot to take in

[MNDConnect]

Hi Sparkles

I'm sorry to hear that you are concerned that you might have motor neurone disease (MND) and are undergoing tests. May I ask what the neurologist has said with regards to your symptoms? Have they mentioned MND or anything else that they think might be causing your symptoms?

Best Wishes

Rachel
MND Connect Adviser

[Sparkles84]

Hi

He said let's wait and see what the tests show. I'm just so scared because I can't see it being anything but MND. I just brushed teeth and noticed tongue has started to atrophy on right side which explains why I feel like tongue is bigger in mouth on left. I feel hopeless at this point. It has progressed so quickly since December

Thank you for taking the time to reply

[MNDConnect]

Hi Sparkles

I know it's really hard but you need to wait for the tests. The symptoms you describe, whilst they could be symptoms of MND, they also could be other things. It would be unusual to have such a wide range of symptoms as initial symptoms of MND. Also, the way in which you describe some of the symptoms, doesn't sound typical of MND.

The muscle atrophy that you are describing would mean that those parts of the body would be difficult to use. You mention quite severe muscle wastage in both hands. Are you able to use your hands? By the time muscle wastage is visible, those parts of the body are severely affected and it's unlikely that someone with MND would have much, if any, use of those parts of the body.

Rather than feeling odd, muscle wastage of your tongue would have a significant affect on your speech.

Has the neurologist said when he expects your results to be back?

Best Wishes

Rachel

[Sparkles84]

Hi Rachel
I did a long reply and now its disappeared so had to type again. I could cry.
I'm having some issues with walking (right leg and foot is worse) but still doing ok for now. Atrophy isn't so significant that I can't use legs but feels like its stiffening up more each day and getting harder to control and having trouble keeping right foot flat on the ground. I've had twitches on and off for ages too but again thought it was just tired muscles. Now they are more frequent and widespread. My eye area twitched for 2 weeks in November and I thought nothing of it at the time. Soon after a feeling of pressure above eye started which would wake me up violently multiple times a night like my eye was being pushed put of socket from above. This went on for over a month. Didn't realise eyebrow was slowly drooping and pushing down on eyelid. At the time gp said pressure feeling could be sinuses so I believed it. Being able to grip things is getting harder and doing simple tasks with hands is more difficult because they are so stiff and weak. I get clumsy and can't even open a tin of vaseline at times. When I realised I couldn't hold a pen as well I knew something wasn't right.
The tongue tremors are constant and I can feel it when tongue is at rest. I only noticed the very slight tongue atrophy because I was watching my tongue tremors. I've been having a little difficulty talking but still able to talk ok..it just feels like right side of mouth doesn't want to co-operate like after you've been to the dentist and try to talk. Swallowing isn't great and I can see and feel the muscles on the right side barely move when I swallow. Pretty much every muscle in body is now affected in some way..some more than others. Even underarm muscles feel hard. The muscles in front of neck, my jaw and one side of chest have stiffened up considerably over the last 3 months and I feel like I'm being strangled and suffocated. I can't drop left shoulder. I've suffered with muscle pain and fatigue for a few years and was told fibromyalgia and given exercises but it got progressively worse. Gradually I noticed my arms, legs and hands felt like dead weight and I was getting the weakness in my face that made changes to my features. I looked back at pics and video of myself from the last 2 years and the changes are very evident. I even saw facial weakness in a video from a year ago which shocked me. My thumbs and the finger next to it go inwards now and I can't hold them straight and the muscle loss in that area between is very bad and can be seen getting gradually worse in pics and video over the last year. I always used to say my hands were not as steady as they used to be and I just put it down to having tired muscles. The sad thing is I have other chronic conditions that masked what was really going on. It's easy to blame other things. Looking back I likely had symptoms for the past 2 years. I'm seeing neurologist on Thursday to discuss MRI but I managed to glance at screen after scan and I saw no tumors or masses so it can only be one thing. I read MS comes and goes and my symptoms just get progressively worse. I'm devastated. I'm sorry for the long message. I'm freaking out

[Sparkles84]

Also my arms are massively fatigued and weak. I've tried massage and heat but it doesn't help. The stiffness in my right hand is so bad I fear I won't be able to use it for much longer