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LoveLife

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Learn about ALS
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Hello
I am new here and per many other threads I've seen would consider myself a "guest," since I have not received a diagnosis yet. I first want to say I am not here hoping to receive a diagnosis from anyone. I understand that only a doctor can do that with proper tests - and I am seeing doctors about this currently. I am merely here to see if anyone may have any further insights based on their own experiences.

Some background on me and my history: I'm a 26 yo female. I'm 5'1", 105 lbs. I am athletic and work out often, eat healthily. I've not a smoker, don't drink much, don't do drugs, and I enjoy long walks along the beach (jk!)

I have had depression once in the past. A few years ago I developed a very slight tremor in my left hand, barely noticeable, and was also diagnosed with sleep apnea. The only medical procedures I've ever had were a tonsillectomy in spring 2016, and an abortion earlier this year, which was quite traumatic for me. I had another sleep study done earlier this year and was told I don't have sleep apnea anymore, though my sleep is just as bad as before. I wake up what feels like several times an hour, and also get up 5-7 times to pee at night.

Sometime early to mid 2016, my tremor got much worse suddenly. I've been told it is an end-action tremor. Around the same time I began experiencing some very severe fatigue. I am always fatigued as I don't sleep well but this became something different. It comes in seemingly completely arbitrary waves, and hits me so hard and suddenly sometimes I will suddenly feel like I'm walking through quicksand and need to lie or sit down immediately. My brain started feeling constantly foggy, and daily mental tasks seemed sometimes impossible, from following simple instructions and conversations, to remembering simple words, to concentrating on anything. Same time I began experiencing some mild neuropathy. Sporadic burning sensations in my hands, sometime achy pain in my arm, electrical jolts going down my leg or neck, sharp stabs of pain in my jaw. This only happened sometimes. It seemed to disappear by early this year, came back around April, then disappeared again and has not happened at all in the last couple months. When it happens I am so sure of what I'm feeling, but then when it disappears it makes me wonder if it was all in my head or maybe stress related. I also started having double vision a few months ago, which my eye doc can't explain.

As if that's not enough.. as of early this year, 2017, along with my tremor I noted my left limb and hand were feeling weaker and clumsier. I couldnt text with my left hand anymore, or type well, and had trouble with fine movements like buttoning my bf's shirts, picking up objects, and doing any sort of activity that requires coordination or precision.

I have seen 3 neurologists in the past several months, as I felt I should not keep ignoring this. The first did not do a very thorough examination, and quickly dismissed me as being magnesium/b12 deficient, despite normal blood levels. I am open-minded so did the vitamin therapy (injection) for a couple months. My symptoms only continued getting worse.

The other neurologists I saw after confirmed that I show mild progressive muscle atrophy in my left hand. I had noticed it but thought again that I must be gong crazy. I have thenar and hypothenar atrophy. It has been getting more evident since July. When looking at the back of my hand you can see a big dent in between my thumb and forefinger, and my hand looks very frail.

The neurologist I chose to stick with mentioned the scary possibility of motor neuron diseases to me. He said the atrophy he is seeing would normally lead him to suspect a disease of the motor unit, though at the same time I am also experiencing many other symptoms so he thinks it may be something else.

I've undergone all sorts of blood tests, which have all come back fine. No Wilson's disease, no thyroid issues, no vitamin deficiencies, no Lyme. I had 2 EMGs, which came back clean, so my doc has pretty much ruled out MNDs and I think Peripheral neuropathy with that. I had 2 MRIs of my brain. No lesions, so they don't suspect MS. They did tell me I have a structural abnormality where my left cerebellum is smaller than my right, but every doc has told me that is something likely congenital and completely separate of everything else going on. Finally, had an MRI of my brachial plexus, which was clean, ruling out thoracic outlet syndrome.

My spine hasn't been checked yet.

Over the past month, i have now started experiencing some bad cramping in my left hand only. It happens every day. My thumb is starting to bend inwards. I do have frequent fasciculations on the daily, too, though my doc said it was most likely benign. I have also started having some very strange mid-upper back pain out of nowhere. Not the kind of pain you get when you pull a muscle, but a painful muscle fatigue when I sit or stand too long.

I have read a little about multifocal motor neuropathy, which seems to hit a lot of what I'm experiencing, given the weakness, atrophy, muscle twitching, and the fact that it is only in my left hand and lower arm. But my EMG was clean, so that can't be it, can it? It also doesn't explain my other symptoms.

Are there any MNDs that can somehow turn up a clean EMG in the beginning and show dirty results as they progress?

I am just so frustrated. I know I should be happy every time one of these tests come back normal, but at the same time I hate not knowing what the hell is going on. The docs know something is wrong but they have no idea what. I was terrified a little while ago, especially seeing my hand slowly waste away. I have been more at peace lately though, because I know there is nothing I can do about it except continue to try and take good care of myself and let the docs do what they're supposed to.

That was probably the longest thing I've ever written. Anyone who stuck around and read the whole thing, thank you. I am grateful. Any insights you could offer and I will be even more grateful! Xoxo
 
Three neuros and two EMGs and 26 years old with sleep apnea, insomnia, and bad feelings about a recent AB. Many episodes of pain in different places.
I'm betting big against ALS. But there's a lot of stress going on.
I would head straight for a psychiatrist. They are medical doctors with an MD--they understand the body and how the mind can make the body do all the stuff you mentioned.
 
Hi Mike,

Thanks for your time. I really appreciate it. Most of my symptoms started well before my abortion. Though I did begin seeing a psychiatrist this year after my termination because I had a lot of trouble dealing with all the emotions afterward. A couple months later I felt so much better.

I also saw the psych hoping my other issues may be explainable and in my head. He was actually the one that strongly encouraged me to see a neuro. He felt something else was going on.
 
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