Need advice and help please

[AmyHelp]

My problems started August of 2022 after I took lupron for 2 months prior to IVF transfer. We were camping and my hand went numb for 20 seconds are so and that weekend I had horrible burning and tingling in my arms that eventually spread to my hands. I even had this weird squeeze and tightness. It got so bad I could hardly change my dtrs diaper or care for her. I went to the doctor non stop and they put me on lyrica and cymbalta to try to help. A couple weeks later it completely disappeared and then came back on and off for the past almost 6 months. I have learned to manage. At times I have trouble texting because my fingers feel numb.

About 3 months ago I started having heavy legs and sometime feel very unsteady. I honestly can only stand up for so long because the symptoms really bother me. I have had a spinal tap, MRI brain and neck, and blood test, emg 6 months ago and everything was fine. About 2 months ago my arms and hands start become very weak. I had trouble typing on the computer and separating papers from each other. My one arm would get this strange sensation that would spread through it and become extremely weak and I would have to hold it up. Now my biceps have this painful squeeze or cramps and sometimes it radiates through the arm and just feels horrible. My hands feel weird and stiff snd I have trouble bending my fingers I am having trouble picking up my daughter now.

I called the neurologist and requested another emg. I told her I was worried about ALS. I got the emg about 3 weeks ago and everything appears normal and the neurologist told me I have a 99% chance not having it. About 2 weeks after the emg I became even weaker in the arms and began experiencing twitching throughout my body. I can hardly sleep. I called the NP at the neurologist and told her things were just getting worse and I am really worried this is ALS. I told her about the new symptoms and requested another emg since they only did one leg and 1 arm on the side that wasn't bothering me the most. She stated to me that there was no reason for another emg and she is 100 percent sure I don't have it. She said twitches are related to anxiety and she believes all these symptoms are related to a traumatic event and these symptoms are in my head. She said they are discharging me and referring me to functional medicine and there is nothing else they can do.

Anyone have any advice??? I am miserable..the muscle pain radiates throughout my arm..even hurts to tough. My left side of neck and back hurt now and both arms are so weak. I few completely alone. Thank you.

 

[Nikki J]

It really doesn’t sound like ALS Two emgs and your neurologist say no along with your descriptions of symptoms and the sensory complaints. Functional neurological disorders are real diseases. If you are being referred to a functional disorder clinic ( which is utterly different than functional medicine) please go. The sooner fnd is treated the better the recovery.

i have posted about functional disorders on this subforum several times. Search that and FND to read. Also google MGH David Perez. He runs the fnd clinic and there are a couple of videos

and read this Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

 

[AmyHelp]

I am really not having anymore sensory feelings. It's pretty much weakness that radiates through both arms and it give me almost an aching feeling..sorry very hard to describe. My muscles are hurting and the twitching is non stop. I find it insulting they keep saying anxiety. I know my body and know something is wrong. It is hard for me to do simple task anymore and my life has just turned upside down. I look forward to nightime when I can go to bed. My legs feel unsteady and heavy sometimes and I get cramping in the back if them. I feel like my body is shutting down. I know people say ALS takes a while to show up on emg's. I didn't have twitches when they did the last one and the weakness wasn't as bad in the arms. Ahhh should i get a second neurolgist opinion??? I wanr another emf but my clinic refuses. I feel hopeless and just want my life back or prepare for the worst.

 

[Nikki J]

Aching and hurting are sensory feeling and heavy too. fnd is not an anxiety disorder

if you want a second opinion get one but be prepared to believe it.

 

[AmyHelp]

Don't muscles get sore with ALS because they are breaking down? Wouldn't that be why I am sore in my arms and neck and feel achy?? I know I have weakness because I have trouble even unloading the dish washer and picking up my daughter. My emg was three weeks ago and like I said at the time I was only having the heaviness in my legs and my arms were off and on. I don't have any tingling or numbness now, except sometimes when I text with my fingers. The tested my right side which instead of my left on the emg and I really has most of my symptoms on my left side. Also, the twitching started after my emg and it's all over. Aren't all these things res flags for ALS?? I really am confused why they are making me feel crazy and can be 100 percent convinced it's not ALS. I think they are going off the burning and tingling I felt 6-9 months ago which I don't think that has any correlation to the new symptoms of weakness. What do you think??

 

[ShiftKicker]

Hello-

It really sounds like you're fixating on ALS when the neurologist, 2 EMGs and a very knowledgeable member here have all indicated your symptoms do not actually fit the pattern of ALS. While your online searches have convinced you, the people who have specialty training and experience do not see it, nor do the EMGs you've undergone show any of the distinct signals that indicate it.

We are not really set up here to provide you what you are looking for, so you must continue to work with your doctors to get to the bottom of your symptoms. Focusing on ALS will not help at this time, as this means doctors will be spending time convincing you it's not ALS instead of working with you to discover what the actual problem is.

 

[lgelb]

No, muscles do not get sore from breaking down in ALS. They just don't work. Pain develops from immobility, not as a precursor to it.

And the reason they test unaffected (to you) muscles on the EMG is because if it is ALS, certain abnormalities will show up in multiple tested muscles, even those without perceived issues.

Whatever the issue, it does not seem to be ALS. I would find a good internist to work you up for systemic illness and consider therapeutic massage to see if you can achieve some level of "reset."

 

[AmyHelp]

I guess I am confused what is weakness. Is heaviness/stiffness in a leg weakness and a symptoms of ALS?

 

[lgelb]

No, ALS is a disease where there is clinical weakness, meaning not heavy or stiff ("feelings") but not able to do things you were able before ("failure").

 

[ShiftKicker]

Hello-

Please make sure to read the Read Before Posting. It covers many of the questions that bring people here and describes clinical weakness (the type of weakness that can indicate concern for ALS) very clearly.

 

[AmyHelp]

Okay..I have some of that then. At times my fingers don't work and I can't pick up a paper clip off my desk or I have trouble typing. I am no longer able to work out because I don't have the strength. Grocery shopping and anytime of shopping is very hard due to how much I have to walk. Laundry and cleaning take me a long time because my hand don't work right. My fingers feel stiff and hard to bend. Sometimes I have to hold my arm at work because it is so weak. Those are weakness signs, correct??

And I want to point out that I can do these but they are EXTREMELY hard and it continues to decline. It's hard to put on make up, do my hair, get ready, climb the steps, bath my daughter. EVERYTHING is a challenge. Let I said I can do it but I feel very week snd I continue to decline and not get better that is why I am on this forum based on everything I have read online it points to ALS. I read that ALS is diagnosed by a process of elimination. ALL my test come back normal.

 

[ShiftKicker]

Amy, the people on this forum are not the ones you need to convince or argue with. Please return to your doctors, as they are the people who can see what you are speaking about and can provide you with feedback and observations during their exam. It is very clear you are not able to be reassured here, despite attempts, and to continue to post will only result in frustration for everyone. Please understand we've provided you with as much information as we have and you must now work with your doctors to track down what the cause of your symptoms may be.

Please take care

 

[lgelb]

The diagnosis of ALS includes an abnormal EMG that you don't have, fortunately. The "process of elimination" is about excluding other reasons for an abnormal EMG, not a substitute for a normal one.

Nor does the ability to do things wax and wane as you describe, manifest as general fatigue, etc. in the time frame you have described.

I'll stand by my suggestions and the belief of others who have responded, that you have nothing to worry about as regards ALS. Again, if your PCP is not addressing your concerns, do find another. If you have an issue, with clean EMG, MRIs and spinal tap, it seems likely systemic and internal medicine is where that assessment starts.

But again, "feel very weak" with a normal EMG and the rapid progression you describe is something else entirely. To emphasize that your answers are on the ground in your community, I am closing this thread. Please do not start another unless you can close the loop on another diagnosis.