Looking for opinions

Jac112276

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Hi I’m Jackie, Im 43, I first want to say I’ve been reading stories and everyone’s strength is inspiring. I woke up one morning two months ago with a sore wrist, it hurt to cut a piece of meatloaf. Every day the pain spread to my fingers, arm and shoulder. I started to get spasms on my upper arm. Then it moved to my other arm a month or so later. I thought ms but after using Dr. Google it appeared my symptoms are of ALS, I have muscle Atrophy on both hands and my right shoulder. It feels like my body is dying more each day. My hands go numb, I have sharp pains, spasms, electric like shocks through out my entire body. The neurologist set me up for MRI, EMG , pages of blood work and then I visit her in Feb. I am struggling waiting this long and can’t even look in the mirror to see my body Atrophy. Has anyone else gone through this? Thank you for listening I’m at a loss of words.

Sorry just turned 44 a few days ago, I’m just overwhelmed
 

Jac112276

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Thank you so much for your response and for reading, She said I had strong legs but my balance is off. I also have Atrophy on my stomach, the left side of my face went numb for a few seconds about a month ago. My symptoms are confusing, I mean it feels like air bubbles going through my muscles at different locations all the time. She mentioned carpel tunnel (at first) before full exam of me. My hands especially my right one is weak some days and other days not as week but the pain is terrible. If it wasn’t for all this Atrophy I wouldn’t be concerned with ALS but it’s getting worse daily. I have night sweats as well. And about three different sensory issues, sharp pains come and go , spasms , aches and electric shock like feeling, these happen randomly through out body.
 

lgelb

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As you have read, ALS doesn't cause the sensory issues you've mentioned at onset. It's much more likely that you have a condition that causes both motor and sensory issues, but that could be anything from a virus or spine problem on up.

There's no reason I can see to think of ALS at all.

Best,
Laurie
 

Clearwater AL

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Jackie, being you mentioned MS... I've had this copied in my Word file.
This may be the time for you and forum readers reference...

There are people diagnosed with MS who believe they have been misdiagnosed, they are convinced they really have ALS because of the similar symptoms, regardless to the medical factors that determined their diagnosis of MS.

Amyotrophic lateral sclerosis (ALS) (also known as Lou Gehrig's disease) often is mistaken for multiple sclerosis (MS). In fact, they share similar symptoms and features, such as scarring around the nerves (sclerosis), causing muscle spasms, difficulty in walking, and fatigue.

ALS affects the brain and central nervous system
MS affects the brain and spinal cord
ALS late stage leaves people paralyzed
MS late stage can affect mobility, but rarely leaves people completely debilitated.

MS sensory problems, or disturbances are feeling, being often one of the earliest symptoms of MS and occur in 50 percent of individuals with the disease. Known as paresthesias, these abnormal sensations include numbness, tingling, pain, ache, burning, increased general debility, muscle weakness, muscle loss and weight loss.

With MS, others may experience a rapid progression of symptoms and quickly become unable to care for themselves.

MS is often diagnosed in people a little younger, with the typical age range for diagnosis between 20 to 50 years old. Unlike with ALS, it’s possible to be diagnosed with MS at a much younger age.

The difference is care benefits, People with a diagnosis ALS are easily eligible for care benefits than those diagnosed with MS which is a more complicated process but available. The Veterans Administration policy concerning veterans applying for benefits for MS than those with ALS is a more tedious process.

Ok, copied all that to say this… I see threads in sub-forums
where I believe people diagnosed or will be diagnosed with
MS find this forum a more fitting place to maybe reinforce
their beliefs or find evidence support for their cause of
misdiagnosis. Paragraph above.

I hope your Neurologist and up and coming tests find
something curable or treatable. I agree with Laurie that
ALS is not a concern for you.
 
Last edited:

Jac112276

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I thank you all kindly. I have appointments scheduled this week. Sadly since I last posted on here I’ve gotten much worse, the shoulder Atrophy has gotten worse, I have extreme weakness in the same arm and the aches and pains are horrible, I have pains in my shoulder and shoulder blades along with painful spasms. Both hands have Atrophy, one in the snuff box, the Atrophy on my hands are near numbs, top of hands. I possibly have two things going on and one seems to be acting like ALS shoulder onset. I’m not a doctor but it’s not looking good. Whatever it is, it is not in my control. I feel like I’m in the twigs light zone. I also have to rest my arm a certain way because it feels heavy to hold up. I thank you all for listening. I appreciate this site much!
 

Jac112276

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May I ask if anyone has an opinion? A few months ago my entire body was weak and felt heavy. There was no pain, it took a lot to bend over and pick up a stick, I had no energy, I thought I was mentally exhausted and that my body was just tired. I had a virus in January but I got tested for Covid and I did not have the anti bodies. I couldn’t even lift my arms and stayed in bed I was so dizzy and sick, I thought it was the flu. After I woke up in September with a soar wrist it has progressed up my arm, shoulders and the other arm, I had cramping in my lower leg limbs. I have not heard of shoulder or hand, stomach Atrophy with MS. Does ALS Atrophy happen in multiple places when the pain begins? I guess I’m trying to find something else this could be and from my symptoms I’m guessing ALS and neuropathy or ALS and MS. Does anyone know if neuropathy causes Atrophy? Or if a mimicking disease that mimics Atrophy of ALS? Both my hands have the finger bones on the top of my hands visible and the bones ache. Also my thumbs and sometimes my pinky and nuclkles. I woke up two days ago with such a pain in my big toe of my foot I couldn’t really bend it. I have two appointments tomorrow and I truely don’t want to go, as I’m sure many of us I don’t like going to the doctors and this is the most scary thing I have had to deal with in my life. Any feedback would be greatly appreciated.
 

ShiftKicker

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Hi there-

These questions can all be asked of the neurologist you are seeing this week. For a few reasons it's important to make sure you ask them all your questions as it directly relates to your condition and what they observe during your clinical exam. They are medically trained and have the answers you need, tailored to your needs and based on their in-person and objective examination. You are focused on ALS and have given yourself a diagnosis based on what you read via Dr Google and other searching. It really is important you wait til your appointment, as all the ALS related questions will likely be moot when your neuro eliminates it from the list of things to be concerned about- as the very experienced folks have stated above.
 

Jac112276

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Hi, thank you for your responses, I got a brain MRI and EMG on my arms yesterday, they put needles in my hands and arms. There was a Dr. who came in after the first part of the EMG and his eyes popped out of his head with regards to my shoulder Atrophy, I even mentioned it to the EMT. I still have to give blood for about four pages of blood work, I won’t know anything until my neurologist appointment on January 12. This is certainly something that that I would ever tred lightly about, it’s terrifying to see my right neck go straight down and wasted across the shoulder with my shoulder bone perturbing out, the side of my thumps are wasted and the top of both hands. I certainly wish this was not happening. I’m at a loss for words. I have not been using Dr. Google. I’ve just been explaining what is happening to me. Yes, I’m crippled with anxiety regarding my body wasting along with all my other symptoms. I don’t even know what to say. I’m not a doctor, I have to wait and while I wait it’s just getting worse. Not even sure what to ask or say anymore. I have no control over the situation. I can just pray.
 

Nikki J

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If you choose to do so you can get the actual reports from the tests. They may appear on your patient portal. If they do not you can request copies from medical records. It is up to you whether you want to do this because you would not have the doctor to explain. the results may be very clear of course or we might be able to help you understand them

your doctor will get these reports soon and if they see something big they would almost certainly let you know. my experience here is that mris are generally read in under 48 hours. Emgs are usually processed right away though they will often tell you they need to analyze x,y or z I think it is more that they are supposed to let your doctor tell you the results
 

Jac112276

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Thank you Nikki, I’m trying to make logical sense of what’s happening to my body and I can’t, my tounge has a metal taste to it all the time and my taste buds are off, my tounge also looks butchered on the sides of it, the dr looked at it. I’m a coffee Holic and coffee doesn’t taste the same to me, I also smoke cigarettes and although it sounds like a good thing, cigarettes do not taste the same to me either. I’m on Medicare so not sure if my EMG would be located online. I am hesitant to call and get a copy because as is I’m not handling this very well and this is without a diagnosis, I have a therapist. I have to lean my right arm against the side of my body or I wrap it around my stomach. I have to position it at nighttime. It certainly didn’t help when the doctors eyes popped out regarding my shoulder Atrophy. I’m just beside myself. It certainly feels not real yet it is. The spasms in my lower regions have improved somewhat, but every morning my hands and arms, shoulders are worse, I’m right handed and that’s the really weak arm so I’ve been using my left arm / hand a lot. Has anyone had the same experience as me? I feel so very alone and just don’t know what to think. Also does anyone know if someone can have a malnutrition difficiancy where muscles waste and mimic ALS? Any advice, wise words, hope would be appreciated as I feel very alone and can barely leave my bed.
 

Nikki J

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It doesn’t matter what your insurance is re patient portals. They are run by the provider’s practice/ institution.

if you are on medicare at your age you must have a significant disability. You don’t have to say what it is but it may factor into this somehow.

deficiencies can cause muscle wasting yes.

if you have a therapist please talk to them about what to do. We can answer questions but are not in a position to offer ongoing support as you wait . Your therapist can though.
 

lgelb

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Loss of taste, is, of course, a Covid symptom. I presume you have been tested.
 

Jac112276

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I don’t sleep since this started in September. I mentioned I had a therapist so you knew. No I don’t have covid. I’m on medicade not Medicare yet. I just got approved for disability. I’ve worked my entire life, I was very successful. I suffered from depression and anxiety (so the doctors said) but it never stopped me. Then I turned 40, I was completely traumatized and never recovered. I was then diagnosed with bi polar and PTSD. I have been given many bi polar medications in the last three years, my last psychiatrist (unknown to me) put me on 400mg of a black box medication meaning it has serious warning effects and she put me on a lethal dose. I have a chemical imbalance due to all the poison medications and now my body/ physical health had been horribly effected. I didn’t mean to offend anyone on here. I will give an update after I see neurologist, I was able to get a January appointment instead of waiting for Feb. but I’m calling today to tell them about the new Atrophy. It’s certainly not normal to have sever Atrophy in shoulder like this, hands, and now Atrophy below my left knee (a big dent) accompanied by other symptoms. Very scary Blessings to you all. Thank you for all the replies and time. I understand this thread can get frustrating. I never meant to upset anyone. I’ll check in after the neurologist follow up
 

Jac112276

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Hi, I have an update, I spoke to my neurologist yesterday, not sure if you ever heard of Stony Brook medicine, that’s where I’m being seen. They found two lesions on my brain so they are ordering a spine and cervical MRI. The EMG came up good but she is setting me up with an appointment with the top ALS dr to evaluate me. They put needles in both arms and hands for the EMG, the Atrophy on right shoulder and both hands. Would/can an EMG show a false negative? I’m concerned she’s setting me up with an appointment with thier Top ALS specialist
 
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