Post-Neuro Appt Symptoms

[etchebaster]

Hi - first let me say that this forum looks to be run by incredible and generous people. I’ve only had (negative) tests for neuro diseases, but it seems like a great resource for everyone involved with ALS.

I feel a bit ashamed posting this (partly because I wasn’t an anxious health person until this year) but I’m really struggling and any input would be so appreciated.

As a timeline:
- aug 20: was having weird body symptoms (very disparate and not worth listing) that I put down to lockdown blues / lack of exercise and didn’t worry about.
- sep 20: I go to the doctor after I realise I had regular twitching in my calves which was why it made it hard to sleep. He also diagnosed slight hand tremors and hyperrflexia. He signs me up for an MRI, EMG, neuro appointment, and other tests (magnesium, calcium etc - all normal).
- oct-20: all tests (including EMG) are normal (signed off both by the neuro who did my EMG, and the fancy (read: expensive) neuro physician I was told to see). The fancy neuro (who sees a lot of ALS, Parkinson’s and similar neuro conditions) says they saw my fasciculations on the EMG but was otherwise normal. By then, I was having twitches in my thighs, back, shoulder and arms then as well, with occasional cramp and sore hands but the neuro (as people here say) was clear that he can’t diagnose anything without weakness, decreased movement, etc. The neuro also couldn’t see the hyperrflexia that my doctor could, and said the tremor is so slight I might have always had it. Generally he said move on with your life.
- I breathe a sigh of relief and try to move on. I read these forums and didn’t want to be someone who second guessed experienced professionals. I’ve also had a huge amount of anxiety and pressure with work this year so I told myself it’s just that. I put the hand pain down to too much computer time.
- Nov and Dec-20: I’ve started feeling weaker in my calves (I know that’s not true weakness) that’s led me to not run as far as I usually can, and get sore easily in my legs. I have trouble going to sleep sometimes due to the calf twitching, and I wake up with this feeling like I don’t have enough blood in my limbs (no pins and needles but the other feeling associated with that). I get cramps similar to tennis elbow in my elbows basically every day. And generally I feel as though there’s not enough blood in my extremities. Again - I don’t think I could diagnose clinical weakness but it’s getting worse and (I’ll admit) has not helped me reduce anxiety.
- today I’m feeling tingling in my big toe and down my foot, and I have slightly reduced movement in my big toe.
- whilst the last symptom has clearly set off my anxiety, the calf cramping is affecting my exercise and sleep to the point where I might ask for something to restrict the twitching.

My initial thought is that this is just due to the fasciculations tiring my muscles and I don’t have any clinical weakness, although the “not enough blood” symptoms and the toe today are strange (right?) and I’m struggling a little bit mentally (after previously having semi moved on).

Is it worth going back to discuss symptoms with a doctor? I don’t want to be that person saying “did my EMG get done too early” but my symptoms are worsening? Have any of you seen similar symptoms in the past, either for anxiety, ALS or other conditions?

Thanks in advance.

 

[lgelb]

There are conditions like Restless Leg Syndrome and Periodic Limb Movement Disorder, that can disrupt your sleep, and your day as well. Whether you have something like this or just twitching, it's true that can seem like it's tiring you out. And if your sleep is disrupted and not refreshing, that can magnify all your niggles and pains.

I would discuss all this with your GP, who can help you separate the chickens from the eggs. But I don't see any reason to worry about ALS.

Best,
Laurie

 

[etchebaster]

Hi Laurie
Thank you so much for your response. I will take that advice.
I felt bad looking at people be unreasonable on this forum but having someone with your knowledge give input really helps, which I now realise.
If I can be bold enough to ask another brief question - is it correct to say that ALS usually present as a painless loss of function / weakness? Ie you don’t get pain, and any cramps / pains are caused later in the process as a result of serious muscle death? That’s something else that is helping me kill my anxiety is that I’m feeling pain and cramps and aches etc.
Thanks again.

 

[lgelb]

Yes, it's true that pain is not part of onset. Pain comes later because of immobility, e.g. not being able to turn in bed or shift position in a wheelchair. It is not part of onset because the sensory nerves are not involved as you would see with MS, traumatic injuries, etc. It is not the case that the disease progression causes pain directly.