Scared I have ALS

[gillrobs82]

Hello,

I'm sorry to be posting and taking up your valuable time. I have read the sticky however have a number of ongoing symptoms I am very concerned about. Apologies for the long post but I wanted to explain the situation from the beginning.

This all started after I had my daughter in February 2012, although I recall having twitches in my feet, legs, stomach etc prior to this. Began having little sharp pains in my feet on and off, arms falling asleep during the night and back pain however I put this down to post pregnancy niggles. Major bouts of fatigue too but again thought this was just down to having an active 4 year old to run around after and new baby. A few months later I was having terrible headaches and pressure sensations in my head teamed with random sharp pains all over and a general weak feeling. In August 2012, I had a car accident where I had what the A&E doctor termed a vasovagal response to trapping my hand in the car door. Luckily I was travelling at less than 10mph however as I had blacked out, my head was repeatedly hit off the steering wheel until the car came to a standstill.

By December 2012, I had returned to work from maternity leave and started having odd episodes of what I can only describe as strange adrenaline rushes (strange sensation in chest/abdomen, increased heart rate, skipped heart beats, feeling hot and dizzy/faint) these were followed with the urge to go to the loo. Also seemed to overheat very easily and exercise became difficult as I would tire easily and heart rate would rocket. Muscles would shake when used for periods of time. I then started having the 'adrenaline' episodes during the night and would be woken with an electric shock type sensation running through my body and my right lower leg would go numb and painful. Twitches all over body including face, scalp you name it everywhere. Patches of skin would suddenly go numb and tingly or felt hot or wet or like something crawling. Also started getting a strong buzzing sensation in my right leg and leg felt heavy and numb for approx 3 weeks. Visited GP numerous times had halter monitor, ecgs, bloods, head ct scan etc done. No answers so was sent to Neuro who carried out physical examinations and ordered a head and neck MRI. The head MRI showed two white spots but Neuro said these were non specific and could be caused by migraines which is what he thought was causing my symptoms (basilar type).

I continued to have episodes of almost blacking out and was checked for pheochromoctyoma, all came black clear. Started having severe itching in legs and circulation would feel strange. Bouts of itching in ears and palate with ear pain and some tinnitus. Headaches continued and I had deep pain in my right eye which hurt when I moved it and ended up with a scotoma which lasted a few days and improved. Increased eye pressure however doctors put this down to migraine again. I then had a weird buzzing tingling in the bridge of my nose and lots of all over aches and pains. Teeth grinding and snoring worsened and a sleep study was carried out to look for sleep apnoea. Again nothing found. At this point I started getting strange sensations inside my mouth like electricity and my tongue began tingling intermittently on the left side along with some zap type twitches. Buzzing and twitches in various places continued and Neuro saw me again, carried out physical examination all ok and sent me for a lumbar puncture which was clear. Another head MRI was carried out and there was no change since the first one. Neuro checked me over and said he felt that fibromyalgia was the cause of my symptoms.

I began having adverse reactions to dairy and had awful reflux and osophogeal spasms that would hurt right through to my upper back. Ended up having gallbladder removed in December 2015. Reflux and pains improved.

The tongue and jaw symptoms started to increase however and I had terrible sharp jabbing pains in both sides of my jaw and in my tongue. Sometimes at the back of my mouth on the soft palate near the ear. Scalp was also sensitive and twitching had increased in these areas. Back to GP who after having a look at me said he didn't think i needed to be referred back to Neuro and prescribed amitryptiline. Felt like I had a lump in my throat and had terrible neck pain so went for regular massages and symptoms calmed down but were still on/off. My tongue then started feeling tired when speaking at times and I would get jaw and cheek muscle pain. My jawline would be very tender to the touch as were my scalp etc. This has been ongoing and got worse in December 2016 and the neck, jaw, cheek, tongue pain became terrible. My throat now hurts and feels like I have a lump in it. I've tickling sensations around where my Adam's apple would be and what feels like spasms. The left side of my face feels numb/warm at times with an odd kind of shivery sensation and when I swallow I feel that little bits of food get stuck on that side. The pain is just awful and very concerning. Whilst the left side is worse,both sides are affected and my neck feels weak and I feel like I am having trouble swallowing. I have an appointment with my GP today and am seeing the Neuro I have seen since this all began on 16th Feb.

Can anyone give me their thoughts? I am so worried

 

[WendyWooG]

Hi
I am sorry you are going through this and I hope your doctors can find the cause and some solutions for you. Having read through your symptoms an awful lot of them are sensory buzzing itching numbness and pain, these are not normally presenting symptoms of ALS. I also couldn't find in your post anywhere that you said you couldn't do normal things or any mention of clinical weakness from your neuro exam, that's reassuring.
What you are describing doesn't sound like ALS so please don't worry about that, keep pushing your doctors for help.

Good luck
wendy

 

[gillrobs82]

Hi Wendy

Thanks so much for taking the time to reply. There was no clinical weakness found on any of my Neuro exams. Saw my GP earlier who thinks the neck muscle/face/jaw pain etc is being caused by the teeth grinding although I'm not 100% convinced as the pain is so severe. Also the throat pain and odd sensations make me think there's another cause. Been given a higher dose of amitryptiline and will speak to the Neuro on Thursday. GP mentioned nerve conduction tests so I will ask at my appointment. Thanks again x

 

[soonerwife]

I didn't read anything that sounded like ALS. Frankly, if you had ALS for 5 years, you would most likely know for sure by now. Things would have quit working by now?!

 

[ShiftKicker]

Clenching teeth can be a serious issue. It can irritate nerves in the face, jaw and neck to the point of excruciating and debilitating pain. It can be referred down your arm, your back, shoulders etc. While your symptoms don't seem to point to motor neuron disease, it's still important to get a referral to someone who understands how issues with the rich network of nerves in your face/skull can affect health and comfort.

Actually, having read your post again-
I just noticed you were actually diagnosed with fibromyalgia. You already have a diagnosis. Are you not receiving treatment for it? Is there something I'm missing here? It sounds like you've received answers from your doctors already.

 

[gillrobs82]

Thanks for the replies. The medication I have been given to treat the fibromyalgia is amitryptiline, no other treatments. I know that the teeth clenching/grinding are big contributors to my problems but the throat, neck and mouth issues leave me very concerned. My neck muscles feel weak and food is irritating the left side of my throat/ear when swallowing and I am constantly having odd sensations in my soft palate and tongue. Often when talking my tongue feels like it is burning and tingles and my jaw starts to ache along with my cheeks and behind the ears (occipital area). All these areas seem to tire easily. Not sure if clenching/grinding can cause all of these issues? I wear a night time splint (soft type) and was fitted with a new one back at the beginning of December. I've already worn through it on the right side. I'm just really concerned there's something much more serious going on

 

[gillrobs82]

Also should have mentioned for the last few months I have been experiencing sharp pain in my jaw/face/cheek area with my first bite of food or drink (it really doesn't matter if it's sour or not). I googled these symptoms and it looks like what I may be experiencing is 'first bite syndrome' and is something to do with the parotid salivary glands. I read somewhere that salivary gland pain was linked to ALS?

 

[lgelb]

If you've already bitten through (not just left bite marks on, which is normal) your new occlusal splint, you should get refitted or a harder splint. Some dentists specialize in jaw issues more than others-- maybe you need a different approach. But ALS is not described in your picture.

Likewise, amitriptyline is a TCA that can cause its own issues, so your titration should be carefully carried out and other rx, even OTC anti-inflammatory drugs could be considered short- term.

Best,
Laurie

 

[WendyWooG]

I have had fibromyalgia for many years and it can account for the symptoms you are experiencing. If you are not getting along well with the amyltriptaline have a chat with your doctor about other options there are other medications such as gabapentin and pregabalin which can be very affective. Laurie makes a very strong point anti inflammatories can be very helpful too.
I was very unwell and had been off work for some before diagnosis my rheumatologist tried several different medication routes before we found the best one to suit and the right dosage. Once everything was under control, I was able to get my life pretty much back to normal with adjustments and occasional flare ups. My particular combination was pregabalin and meloxicam, but everyone is different and it's worth trying different things.

Good luck x

 

[gillrobs82]

Thanks both, I am going to go back to my dentist and see if there's anything he can do. I maybe need to look for another dentist in the area that specialises more in jaw issues. The pains all over my face/head/neck and inside my mouth etc are very concerning and becoming unbearable.

I will discuss medication further with my Neuro on Thursday and will ask if I can be referred to the Pain Clinic. My friend used to get acupuncture etc there for a similar condition and she felt it really made a difference so I will see if this is a possibility.

I am just praying there's not something more sinister going on with all of this

 

[WendyWooG]

The pain you have with your jaw can be linked to fibromyalgia too, I myself have broken several teeth over the years and there is also a known link between fibromyalgia and temporomandibular joint disorder, ( I hope I have spelt that right ). The pain that can be experienced with that can be extreme but it won't be something for your neuro. With the difficulties you are having it would be good to go back to your general practitioner and get them to explore the problems you are having further as the treatment options can be different.

Sometimes you can have more than one thing going on so if you hit a dead end with an exploration it's always good to go back to your general practitioner for a wider viewpoint and a referral if necessary to a different speciality.

Good luck x

 

[gillrobs82]

Thanks Wendy, much appreciated. I will bear that in mind and speak to my GP again x

 

[gillrobs82]

Back again after my GP and Neuro appointments. GP has increased my dose of amitryptiline and thinks the pains I am experiencing are from grinding/tmj.

Saw Neuro yesterday who carried out a physical examination and said it was normal. I told him about my face/neck/mouth symptoms and he said I have a lot of movement in my tmj's. He didn't look in my mouth at my tongue or soft palate etc though. Also told him about the swallow being off on the left side and bits of food getting stuck, irritating my ear etc and he said he'd send me another head and neck MRI.

I had the scary throat/neck spasms again last night. They are very uncomfortable and distressing. Could this be bulbar onset? My throat feels tight, my tongue feels thick and my neck is sore and stiff

 

[gillrobs82]

Now getting some cramping in my hands and right foot, should I go back to my Neuro and ask for an emg?

 

[Atsugi]

Gillrobs, in your posts, our people have not seen any reason to worry about ALS.

Ask your GP medical doctor what to do.