Help on symptoms

Swimmer

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Dear all,

I am a 37 year old female, with no history of any medical complaint, rarely even off of work for a cold, and actually fairly fit. However the last three months especially have been really tough as I feel that I show symptoms of ALS. It would be wonderful to have some opinions or advice here, as I feel very much alone on this journey. Below is a timeline of my main symptoms.

Looking back -> Feb – hand pain around thumb which meant writing was painful for a day. General tiredness.

Feb/March – start of diffuse twitching all over which was only symptom I remember.

April – sudden onset of other signs:
  • all sporadic: weak hands, cramping in hips, cramp in leg, weak face, weak wrists, waking up not able to breath, face tremor when smile, fatigue
  • mild thenar atrophy in right hand
  • weight loss noticed (Used to be 54 Kg, now 50 Kg -> BMI is above 19/18 now)

Saw two Neurologists (one was neuromuscular)
  • all clinical tests and blood tests ok (only very low vit D and knee reflexes are brisk and certainly more than last year when these were last tested due to a random fainting episode, where incidently I hit my head whilst falling).
  • MRI normal, EMG clean on asymptomatic limbs
  • BFS was suggested.

The problem is that I feel I have had progression since then.

May
  • weakness in hands, one episode of being so weak I couldn’t hold my purse.
  • weakness around elbows
  • strange feeling of swollen back of tongue
  • twitches in tongue
  • fine twitches noticed in thenar muscle where atrophy is
  • some intermittent feeling of breathing issues
  • I only had one time where I noticed a lisp.

June
  • intermittent pain in hands
  • pains in body

General Neurologist recognized hand muscle atrophy (thenar on right hand, interosseous on left) and did say something is going on, but at this stage was not sure.

July
  • throat cramp once
  • tiredness / easily tired
  • now an on-going tightness in airway which feels straining for breathing
  • tongue deviates to left and there is some size difference (left seems thicker)
  • feeling of a stab in upper body

I am due to see an ALS specialist in September in Berlin and may have an EMG test in July with the last general neurologist I saw.

Does this sound like perhaps bulbar, or limb onset?

This is such a scary time. I hope that you might be able to provide some guidance.

Kind regards to you all.
 

lgelb

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No, it doesn't sound like ALS to me, but waking up unable to breathe suggests asking about a sleep study.

You do not mention if you are supplementing the very low vitamin D now or if causes were explored?

Best,
Laurie
 

Swimmer

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Dear Laurie,

Thank you very much for your reply.

Most of the bloodwork, as well as MRI, lumbar puncture, was done by a hospital that I went into in April because I was so scared and my doctors were not helping to explain what was going on.

My vitamin D was 11 mg/l (if I have the units correct). I was advised to increase this in the final letter written to my dr, but in general havnt had great medical support from her (she more or less just shrugs her shoulders and laughs), so am doing this by myself at 2000 iu per day. The only other thing was that I think my ANA was slightly positive, but then this wasnt mentioned in the final conclusion from the hospital and no medical professional has since mentioned this again, so I guess it may not be important.

I didnt want to go into too much detail in case it would be too much, but in case it is useful, here is a but more description just in case this is useful for anyone.

Looking back I've had periods of tiredness over the last year or so which I didnt put down to anything sinister. End of last year I was aware of a full feeling in my mouth very occasionally and being aware of my tongue.

Skip to February this year and it was painful to write with my right hand on a couple of occasions. Then twitching started - mostly little one time/few time twitches that I mostly only felt and didnt see (calfs, face, arms, abdomen, underside of feet) that then spread to everywhere, and now sometimes I do see them (back of calves, shoulder, instep of foot). I've never had the 24/7 experience.

In April I started to get the other symptoms, starting out all intermittently with the weak hands, weak face etc. These experiences lasted only for a few hours each time.

However since then, I feel that there is always something off. During April and May I had strange numb and slightly painful feelings with the hand that has some thenar atrophy. It wasnt numb to touch but felt numb inside. Then I noticed the twitches there. I suppose that is what initially scared me the most. Sometimes there have been strange pains on the inside of the elbows, and stiffness in the index fingers, and some pains in the palms and back of the hands. Also intermittent pain in thenar, and twitches in the interossei as well as thenar when I "flex" them somehow. The wrist has had real periods of weakness, on and off for a while, followed sometimes by the left. For now, apart from a little mild pain in the wrist below the thumb, these seem ok-ish again.

Now it is the recognition that the area under my ribs is lopsided - my right side, which in general seems more affected right now, is smaller (the rib cage sticks out less). And for the last week my breathing feels really restricted, like I cant take a deep breath without alot of effort anymore, and I'm at the moment a bit out of breath doing basic things. I also seem to have lost muscle generally in my upper body - I'm much skinnier than I've been before.

My tongue does have intermittent twitching in the middle and sometimes a burning type feeling on the tip.

What is strange is how these symptoms (also those in the first post, not to repeat them all) have all come and gone over thr last three months, but always come round again, and for longer. E.g. the breathing problem seems like it might be here to stay now. Currently when I smile, my face feels like it is trembling a little.

I really appreciate you reading this, and know that all I can do is wait for the next appointment I have. But when I ask, so far nobody is able to say what is going on, and my belief is that with all other tests coming out ok, that it only leaves an mnd.

I would be interested to hear if anyone has had similar experiences or might have other suggestions as to what might be going on here. I feel that I have to be my own advocate at the moment. I'm a UK citizen currently living in Germany, so living away from family with all this going on is quite tough.

Wishing you all a lovely day.
 

lgelb

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If your GP is not helpful, you could seek out another one, or a nutritionist to help determine the best dose of vitamin D, and hopefully you spend time in the sun as well. That kind of dose is probably not enough, there are prescription forms, and that low a level could certainly cause symptoms such as you describe, and if you search the forums, you will see other people who have found themselves with low D.

You had a clean EMG months after symptoms began, so it is not logical to say the only explanation left is MIND. It is at the very bottom of the list, as you will have read in the stickies.

So I would continue to suggest you ask the neuro or GP about a sleep study. But we won't see ALS in this -- a very good thing.
 

Swimmer

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Hi Laurie and others,

I just wanted to follow up on my message. I am still waiting to see a Neurologist, but really feel that I show the symptoms of ALS.

The last couple of weeks I have continued to have a severe shortness of breath that actually was a bit painful, and lasted about a week. It is now there only mildly. Now I seem to have more consistent twitching / tremoring of my tongue at rest, and a kind of zapping feeling on the tip and on the surface. I also get a feeling of my tongue being quite full sometimes, like it is too big for my mouth.

In addition to the fact that both interossei muscles look like they have disappeared (as well as my right thenar), and sporadic weakness in my wrists, I can't help feeling that this all points to ALS or something similar. My feeling is that this could be bulbar onset with some upper limb involvement, as looking back I had this strange feeling in my mouth even before I noticed the muscle body wide but diffuse twitching in February.

I am so scared - I have appointments coming up to perform an EMG and so on but am almost too scared to go.

Does any of what I've described some similar to other sufferers?

Kind regards,
Liz
 

KarenNWendyn

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Good news! Painful shortness of breath that comes and goes and strange feelings of the mouth and tongue are not ALS.

The neurologist will test your strength to see if there is a problem there and should be able to reassure you or provide an alternate explanation for your symptoms. Think of it as information rather than something to fear. Your symptoms don’t suggest ALS, so it will be great to get some answers when you see the neurologist.
 

lgelb

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Karen said it all. Sleep, D and possibly allergies are all areas to consider. ALS isn't one. Suck it up, go to the neuro and you can be reassured on the ground, which is not where we are.
 

Swimmer

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Thank you for the feedback Karen and Laurie. Of course, I know the only way is to see a neurologist.

One thing I would like to ask, if it is ok: the last couple of days I have also experienced swallowing issues. Food and drink is ok for now, but any "dry" swallow seems ineffective. I feel like there is mucus or something at the back of my throat, which I just don't seem to be able to swallow and swallowing only saliva is getting tricky. I just seems quite ominous. That with the tongue twitching and the rest of the symptoms give me cause for concern.

Anyway, I very much appreciate your comments and will keep you posted if it is of interest to visitors here.
 

affected

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No that swallowing issue you have is nothing like an ALS issue I'm happy to say.
Let us know after you see a neurologist and have EMG results, until you have that there isn't much that can be said.
It doesn't seem like you have read this post where you need to start from.
 

lgelb

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Anxiety is a frequent cause of feeling difficulty with swallowing and a stuck feeling in the throat. There can be actual dryness, so keep up with your hydration and try to de-stress. Your description does not match what people with ALS here have actually experienced.

Please do not post again until you see the neurologist.
 
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