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kisy

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I'm almost 33, female, mother of 4. Two years ago (march '14) I had a 'neuro event', where I had electric shock sensation through my body, slurred speech, lost balance, then left leg would collapse when I tried to walk. My left calf felt like it was buzzing, half of my right calf felt the same. The buzzing moved up my left leg to my thigh and never left. the rest of the neuro symptoms went away and I was left with a collapsing left leg and a thigh that left like the muscle were constantly rippling (wasn't visible).

I went to a&e, they did a ct scan and lumbar puncture. both clear. found to have b12 deficiency and started injections.

As time went on, my leg became stronger and it stopped collapsing about 6 months later (very occasionally would feel weak). The sensory symptoms continued in my thigh and actually intensified. There was an area the size of my thumbprint that if i pressed (gently) would increase sensory stuff in the whole thigh. by the december '14 it had passed the uncomfortable stage to the pain stage. my whole thigh was cramping and no stretches would help.

i was sent for an mri of head and neck in july(??) '14 and saw a neuro in the weeks after. No lesions found on mri. Diagnosis of functional neurological disorder. I asked whether it could be from b12 deficiency, but 'the level of damage needed for my symptoms would be visible on head and neck mri' apparently. I asked for emg on my leg, he said he would request test, 'if only to put my mind at ease and accept diagnosis' he said nothing would show up, but if it did, i would see him again.

I finally get emg on leg in Jan '15. This showed 'evidence of nerve repair' and received letter from near saying 'it was probably from an old injury, see ya!'. I finally got an appointment with him, only for him to tell me to leave because i wanted further tests, as 3 GPs had said i needed an mri of lower back. He eventually referred me to another neuro and i saw her in dec '15, who arranged mri of lumbar spine in jan '16

***sorry this is taking so long***

bulging disc at l4, but no nerve compression. found to be vitamin d and folate deficient, treatment started. i have another appointment with her in june

My left thigh has continued to increase in pain and twitching of the muscles. It is constantly tight and in the very few times it is relaxed (after a hot bath for example) it feels like i am missing a massive chunk of muscle. it's really difficult to describe. it will collapse on itself.

in jan this year i went to the doctor because i felt like i had something stuck in my throat. he couldn't see anything. it's never gone away and the last few weeks i have had sudden 'attacks' of speaking like i'm losing my voice and like i have to cough to clear my throat. it lasts maybe an hour and then i go back to normal.

ok, so, i'd better add my 'atrophy' photos.
 

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kisy

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oh, need to add, i walk with a limp. i cannot move my leg the way i used to and as time goes on, my movement is becoming more restricted. it feels like i'm walking through concrete. and, worryingly, i can feel it starting in my other thigh. different area, but if i walk more than normal, i am starting to feel the heaviness and cramp i have with the other thigh. for the past six months i have been getting an agonising stabbing pain in my thigh. started out as once in a while and now every day. always the same area. i was on 2700mg gabapenton each day, switched to pregabalin as the gab wasn't stopping all the pain. pregabalin isn't either, but thought i'd give it a fair go (started it in feb this year).

thought i should maybe direct people to where i think there could be atrophy. the leg on the right (my left leg) there is an indent below the hip down towards the knee. also, the skin on the front of my thigh is looser than the right and just sort of droops on the knee.

if i tense up both thighs really hard, then relax, the left thigh doesn't relax and that is how my thigh is all the time, tensed up.
 

lgelb

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Kisy,
You have a lot going on, but I can't connect it with ALS (which is good!) You shouldn't remain on that kind of pregabalin dose, which has its own liabilities, without more of a diagnosis. Nor does it make sense that you would have multiple nutritional deficiencies at your age, that create such severe symptoms. I really can't discern anything in your photo.

I would suggest that you see a consultant at a university medical center. Perhaps one of our UK members will chime in.

Best,
Laurie
 

kisy

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thanks so much for your reply. i think i know, deep down it's not mnd, but i hate not knowing what's wrong and just want it to stop or at least stop getting worse.

can you not see the indents on my thigh? they weren't there before and it's at those spots the tightness and cramping is worse.

another non-mnd factor would be my reflexes. my knees are only slightly present with reinforcement. i had a medical a few weeks ago (regarding a personal injury claim;a car went into the back of me last year and had awful whiplash) and my ankle reflexes are now both absent, even with reinforcement. and he said i had 'equivocal planters'.
 

Atsugi

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Kisy, you really didn't mention anything that had anything to do with ALS. Your neurologists know it, too, and I think you already knew that before posting here.

Being ALS-free, you should go elsewhere for further answers. Our mission is ALS, and our resources are limited.
 

kisy

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Sorry if this annoys you again...

I spoke to my neurologist (have appointment with her next week) and she said the data from the EMG from January last year showed reinnervation and a large potential wave when my left thigh was tested. Said b12 wouldn't have called the nerve damage as that would cause regeneration, not reinnervation. so that means it was motor axon damage?

I was at the GP a few days ago and showed him my legs and he said there is a definite difference between the legs and will be a result of 'whatever is going on with the muscles' as the dents and thinning of the muscles (my lower right leg and foot have also lost mass, as well as different parts of each hand and right forearm) are only in the places where i get pain, cramping, spasms and 'buzzing'.

i do have clinical, not perceived, weakness of my left leg and have done for two years.

i'm not imagining the thinning and 'dents' and i do not WANT a diagnosis of any disease/disorder, but i DO want to know what is wrong with me and it seems no matter where else i look, i end up back at MND
 

Atsugi

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Not sure what we can do for you today, Kisy. Your neurologist can advise you from here. A bunch of dummies on the Interwebs can't examine you.

I can tell you that pain, cramping, spasms and 'buzzing' are not ALS symptoms. Plus, if ALS began in you 2 years ago, the odds are that you would be dead or very disabled by now.

You doctors might find other things--not fatal things.
 

KimT

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Hi Kisy,

I think you should follow up with your neurologist and ask him all the questions that are concerning you. We can't do anything more here in the way of diagnosing what you have but your doctor can.
 

affected

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Ditto Mike and Kim

You have a neurologist appointment. Rather than coming here, sit down and make a careful list of the questions you want to ask, your concerns and fears, and anything you want checked further.

Be prepared for the appointment, then follow what you are told there. Doesn't sound at all like ALS. That doesn't mean you don't have something going on.
 
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