Ongoing symptoms, fasciculations and cramps

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Lizzypip68

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Hello all
I posted here previously and my last thread was closed mid 2018 when I was asked not to post again - I hope you will allow me to ask another question due to the time lag and the difficulty in seeking professional help in the new Covid 19 world.

Since my last post I have had continuous fasciculations, pain etc and was ultimately diagnosed with Fibromyalgia and Functional Neurological Dysfunction c2 years ago. I have tried to continue with my life and put my MND/ALS worries behind me. I took low dose Amitriptyline 10mg daily.

Recently my left leg, still half an inch thinner, became extremely painful, I saw GP who upped Amitriptyline dose to 20mg. Within 24 hours the twitching in my legs increased massively to include both fasciculations and myoclonic twitches. After 3 days I woke with to a severe upper leg cramp that caused be to pass out momentarily and vomit due to the pain. I went back to GP who advised to stop meds and switch to Gabapentin, 100mg, 3x daily. He has also made referral to rheumatology but this could take months due to Covid 19.

Gabapentin caused terrible headaches, worse on left side of head with strange creeping sensations across my scalp, so again I was told to stop medication, take nothing and see what my body does.

My left leg remains very troublesome but now I have problems with an ongoing cramping feeling if I put any pressure on the leg. It constantly feels as if it will cramp if I stretch the leg, crouch down etc and again tonight I have woken to a thigh cramp, thankfully less severe than last time. I also get cramps in my right leg, but far less than the left side, along with a cramping sensation in my upper abdomen, just below ribs, more noticeable on left side.

I can still use my leg, walk on heels and toes, but it hurts when walking, I get a lot of muscle pain along with the cramps and I have to concentrate to make myself walk properly as I want to adjust my gait due to pain. I also have sensations of electric currents running down my legs, worse when resting/still which is affecting my sleep.

I realise that a lot of my symptoms do not fit ALS (pain, sensory issues etc.) but this new cramping, along with ongoing fasciculations has really worried me. I also recognise that I have had fasciculations for 3.5 years now, which had allayed my fears of MND/ALS until the cramping started.

I hope that I do not offend by posting again but any advice/thoughts as to how to proceed would be so appreciated as obtaining medical appointments/referrals is so much harder during lockdown.
Thank you.
 
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lgelb

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That your leg got more painful and some of the drug options do not suit is no reason to circle back to ALS. If your sleep is being affected, I would ask about a trial of an anti-RLS drug. I don't see that this would require an in-person visit. You could also ask for a video consult with a physio and begin keeping a food diary, as many of us have changed diet and exercise routines during the pandemic, that could be affecting your symptoms.

Best,
Laurie
 

Lizzypip68

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Thank you Laurie, I will follow your advice.
Please can I just clarify that you do not feel that the cramp is significant symptom and that MND/ALS is unlikey? I have no wish to offed an will not continue to post here but really appreciate your input. Thank you.
 

lgelb

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Yes and yes. Re-evaluating your sleeping environment could do no harm, either.
All the best, Lizzy.
 

Lizzypip68

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Thank you very much Laurie and all the best to you
 
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