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[Shavan76]

You are absolutely correct. Thank you for all of the clarification. Yes...We definitely do not know that there is anything MND related here. I put the more stretched possibilities here so as to possibly bring Janine back to Earth so to speak. Not meaning that in a derogatory way at all. I mean, we all have fear levels. When someone is as paniced as Janine is here, sometimes showing them just what they may have to go through is enough to trick the mind into that "healing" phase. If your mind is scared to the point of Janine's​, then it continues to panic and cause more problems ("symptoms"). However as strong as the mind is, there are two sides to "mind over matter" and I was trying to tap into that other side of it. Perhaps if she realizes just what may be involved in these tests that she is so eager to get, then perhaps her mind might ease up a little on the panic of ALS. I don't know if this really makes sense, but it seems she is in a spiraling down motion of symptoms and panic. I truly pray that she starts to feel some relief and peace in this. I feel awful that anyone would feel this scared. This disease is horrible and I hate to see so many people convincing themselves to the point of making themselves this ill.

I still whole heartedly look to the veterans here for it all. I really just felt pulled to reach out to here. Thank you all for your experience and incredible wealth of knowledge.

Hugs my brothers and sisters.
Shannon

 

[Janine]

Thank you everyone. I am terrified. My weakness has continued to progress as have the fasiculations which are felt as a buzzing or vibration under the skin. My husband can feel them and even he finds them disturbing. I literally feel like weights are attached to my body and I have lost some coordination in my left arm and legs. Yesterday my right arm was fine and this morning it feels weak and stiff. The fasciculations get worse with activity. I have no obvious muscle wasting though difficult to assess in my core. I am not myself. Trying to stay active, but severely limited in my endurance. My family is used to me being able to handle it all, but even though I am trying to at least do the basics I really feel like I just want to give up. May 26th seems so long away when I am feeling so bad. I am afraid I will deteriorate very quickly before I even can get a diagnosis. I know my complaints are subjective, but I feel so alone. Trying to "forget about it" is impossible.

 

[Janine]

I'm not really afraid of the tests and I am not eager to get them as the results may change my life forever, but I need help. I cannot continue to go through each day trying to pretend nothing is wrong. Something is very wrong.

 

[Nikki J]

We understand waiting is hard. Please know that even once you are started with tests answers most often take time. The EMG will give you information- good news or bad- if bad usually there are other tests - MRIs and a ton of blood work- that are done to exclude other causes. Even genetic carriers like me where ALS is the horse and not the zebra went through them. If good then clearly the cause of your symptoms needs to be explored with more tests.

Of course you are worried. It is only normal but still try to distract yourself as much as you can. We are supposed to get some spectacular weather next week. Make some plans to enjoy it.

 

[Janine]

Very rapid decline. My back is so weak it is hard to stand upright and I am having terrible back pain. My chest feels heavy and my left arm is very uncoordinated. I have clonus in both hands. I can feel the fasciculatiios everywhere, but mostly in my back and neck. I feel so heavy and really can't pretend I am ok anymore. Don't think I'll be in good shape by the 26th.. I am worried about my girls and the future.

 

[Lixen]

You don't have ALS.

Once you have the EMG and it comes back normal I trust that will be sufficient enough to rule out ALS in your mind? If not, you may want to spend some time addressing your admitted somatoform disorder/issues. That's the one thing that actually explains every single one of your symptoms far better than any rare, terminal disease ever could. A disease that never presents in the way you've described.

Good luck.

 

[Janine]

Don't really know what explains my odd symptoms. I know I have been having more and more twitches. They are worse after activity and some feel like a continuous vibratiion under my skin. I am also having more "jerks" in my hands. My tablet will rhythmically jerk as I am trying to hold it. Of course the worse symptom is this heavy body feeling when I try to get out of bed. When I wake to per it can cause me to panic. After I've been up awhile the heavy feeling goes away, but I am having balance issues and can't walk very far before my back feels weak and the muscles begin to vibrate. I often "miss" when I reach for things. Sometimes my voice seems to rattle and I have to clear my throat a lot and my mouth is like the Sahara desert when I wake up. This all started around 6 weeks ago and has gotten progressively worse. I know it is fast and so many different symptoms, but I am functionally no where near my baseline. Each morning seems a little worse.

 

[Janine]

I'm still here. My EMG is scheduled for one week. I continue to deteriorate with fasciculations mostly in my back which is now very weak. The fasciculations are fine (almost vibrations) which are worse after activity and can be felt by others and I have terrible pain in my upper back with little activity. I am feeling weaker in my arms as well and now have hand fasciculations with my ring finger on both hands twitching and my thumbs having clonus? (Several beats of twitching) when I scroll on my tablet. I am also having stiffness in my legs and arms. I feel kind of alone as symptoms seem so rapid and my physical abilities are diminished significantly and my family just doesn't get it. I want to do and be all that I could just 6 weeks ago, but I can't. I have been going through the motions, but I'm struggling . Sorry to dump when I don't even have a diagnosis, but things seem to be happening so fast and I'm frightened.

 

[Janine]

Glad this thread is still open even though no one but me is reading it. My EMG is scheduled in two days. Meanwhile I am declining, literally daily. Walking is very difficult and I need to think about every step. Off balance and stiff. I also feel stiff and heavy everywhere else as well especially at night. Mostly the weakness is in my core as are the fasciculations which are fine and continuous. I am waking every hour at night with headache and often with my heart racing. I am very frightened. Feel like I'm dying yet those around me don't see it. I feel as if my breathing is affected. I had gone to the ER a few times when this all began about 5 weeks ago but realize they have nothing to offer so I just am suffering alone. How do pals do this. Doesn't seem that their is much help available in the medical community. I cannot emphasize enough how poorly I feel and how far from my baseline health I have declined in just a few weeks. I was a critical care nurse until last July when I was injured on the job. I suffered a spine injury with primarily neck problems, but also headaches, spasms and dizziness. Beginning to wonder if these are related though I had no lumbar issues at all until this started about 5 weeks ago and I feel more weak and stiff then actual pain. Can spine trauma trigger ALS. My onset seems atypical and rapid though they don't meet the criteria for other common illnesses either. (No sensory loss, copious fasciculations) I feel so alone and stuck.

 

[codyclan]

Janine,
People are reading your posts. They aren't responding because we are not doctors and can not diagnosis you. We have stated repeatedly that ALS does not present in the way you are describing. We have explained that to you repeatedly and yet you focus on the fact that you must have an 'unusual presentation'. No one is saying that you aren't ill. Your symptoms are clearly impacting your quality of life, but it does not sound like ALS. One of the things that really struck me was that you said that 'people around me don't see it'. Most PALS report that those around them see their issues--notice a different gait, notice slurring, etc....

The other thing I want to say is that most people with ALS don't 'feel' sick. My husband felt fine, his muscles didn't work. He felt fine until the very end stages of this disease.

I think that focusing on ALS is limiting your diagnostic process. Not only are you looking for zebras, but you are looking for albino zebras. ALS doesn't present this way. Please, for your own mental health, stay off this site until you have your EMG.

Best wishes.
Tracy

 

[Janine]

Thanks for the tough love. Guess I am being an ass. Especially with so many of you actually living with or caring for someone who actually is suffering from this horrific disease. As you can see by the time stamp I wrote that last post in the middle of a sleepless night. I am used to being very active and quite limited from my baseline due what feels like instability of my pelvic area and heavy uncoordinated legs. Seemed to come on out of the blue though I have been dealing with some strange neurological symptoms after a work injury.

Believe it or not it was a workers comp doc that actually put the idea in my head when during a court ordered exam he told me I have a "comorbidity" of a MND due to findings of tongue fasciculations, positive rhomberg, extra ocular eye movements and a wide gait. I thought right away that was pretty irresponsible since I will not be seeing him again and no follow up was arranged. He just let me walk out of his office with that little nugget. I'm a nurse so I was well aware of what he was saying and I just ran with it especially in light of the recent feeling of pelvic heaviness and weakness which just got much worse quickly.

I'd always had some fasciculations so really didn't pay much attention, but sure enough when I got home and looked in the mirror there they were. Since then they have become widespread and can be felt by others. For example I left the hospital and was walking to the parking garage when the low back/pelvis felt like it wanted to give out. Suddenly I felt vibrating in the area. I put my hand on my low back and I could actually feel it vibrating. I asked my husband if he could feel it and he looked shocked and said yes. He could see it as well.

I have had other times when similar vibrations were felt over my rib cage and upper back and my husband could feel those too. I used to hike in the woods for several miles every day and now I struggle to walk around the block and after I have more fasciculations and, unfortunately back pain and burning.

Now I have a weak feeling in my left upper arm and left distal thigh just above the knee. Yes, I can do things but I feel uncoordinated and wobbly.

Thanks for responding. God bless you all. (And me too)

 

[Nikki J]

To say you had MND under those circumstances is incredibly irresponsible. No wonder it sent you into a spiral.

Good luck with your EMG

 

[Janine]

Today I had my EMG and nerve conduction study at BIDMC in Boston. They did my left upper and lower limbs several places. A neurologist did the test and the final results will be in for my appointment with my neurologist on May 31st. I was told that preliminary results are that it was a normal study. I continue to have the low back weakness and leg heaviness and stairs, in particular are difficult for me to negotiate. I still feel "jumpy" and still feel twitches, but I am apologizing for my selfish anxiety and will schedule an appointment to delve into whatever psychological issues may be aggravating my condition. I thank everyone here on this forum. You are selfless and giving. God bless you all.

 

[Nikki J]

That is wonderful news. I hope the neurologist can find the answer quickly for you. Thank you for sharing your results.

When you do get a diagnosis would you kindly return and tell us? It is so helpful to others who come here worried.

Best of luck and wishing you a long and happy healthy life

 

[Janine]

I definitely will Nikki. You have been such a comfort and a voice of reason and I owe you all a debt of gratitude. Wish I could say all my symptoms are gone (they are not) still feeling heavy and weak in hips/pelvis and stiff in the legs especially after exercise. As well my left arm feels somewhat stiff and shaky and I continue to "miss" door handles etc. when I reach for them with my left hand and I still feel like I'm plugged into an electric socket. IDK probably aggravated by anxiety. I will follow up with neuro and psych and keep you posted for those dealing with similar. BTW, I know people perceive pain differently, but I found the tests quite tolerable. Blessings.