Does this sound like early ALS signs

[LarsBB]

Hi all. I have been following this forum for a while and decided to ask for your opinion. First all I admire your strength and your willingness to help others in your terrible situation. I wish you all the best.

I am a 43 year old male living in Denmark, with my wife and 2 kids. I have been living in fear of ALS since march 2022 and hope you can maybe help me figure out how much i should worry about ALS.

I think my symptoms started in spring 2020, when I noticed that the outside of my right thigh has shrunken quite a lot in size and had gotten a lot weaker when playing badminton. I had been injured in the right thigh 4 times in the period 2017 to 2020, so the atrophy could be a result of this even though my physiotherapist finds it unlikely to cause this much atrophy. Below is a summary of symptoms and timeline progression:

Spring 2020: Notice that the outside of thigh (vastus lateralis) and indside of thigh (vastus medialis) has atrophied a lot. I still cant figure out if this is due to injuries or if is caused by something else, but according to the specialists at the sports clinic i go to it is not due to the injuries.

December 2021: I noticed that my 3 middle toes on the left foot would feel numb/tingle when I sad at my desk and that my left hand felt weird when I was typing on my pc, like I had to concentrate to hit the letters with the fingers.

February 2022: the feeling in the left feet got worse and it felt like all toes and the front of the left foot was numb, but I could still feel a touch on the skin. At the same time my ankle on the left foot started to feel week on the outside and I started having difficulties with the muscles on the outside of the lower left leg, like they would not support me, so I would easier lose my balance when putting all my weight on the left leg.

March 2022: Visit doctor and discuss if it is ALS. The doctor acknowledged the atrophy in my thigh and said it should be examined and that I should see a Neurologist. This is where my anxiety kicked in (had health anxiety 10 years ago) and after this I started having more symptoms and also expiring fasciculations in both legs / underneath both feet, as well as small cramps below both feet, especially at night. I also started feeling exhausted in my left leg and left arm after fitness, which I had never experienced before in the same manner. End of march I also started having fasciculations in the left arm. I also started getting jerks in 2nd, 4th and 5th finger on both hands in my sleep.

April 2022: My jaw and chin is tight and I have a tingling feeling in my face and I feel like I am sometimes mumbling when I am tired. I get jerks in toes, both arms and both writs. I also begin to notice that my left lower leg gets tired much faster than it normally does and that I need to concentrate to walk normal, like it is harder to lift up the toes/front of foot when bring the leg forward. I can still walk on toes and heels. Both my ankles start to feel more stiff when I wake up in the morning.

I get a normal MR of head and spine, a normal ENG and EMG. EMG is done on right thigh (vastus lateralis and vastus medialis) and in shine muscle (tibialis Anterior) in lower left leg. Clinical examination is also normal and the neurologist clearly states that there is nothing wrong with me. I asked the neurologist why he did not test the calf muscle on the outside of lower left leg that I experience symptoms in and he answered that if I had ALS he would also find it in the tibalis anterior in the lower leg. Is that correct?

I also asked why they did not test my left hand/arm with the EMG and I was told it was not necessary as they found no problems in the right thigh and lower leg. Is this normal procedure?

Late April: I notice that is awkward to walk on stairs with the left foot and the toes on the left foot are more difficult to move and they tend to cramp/being tight most of the time I use the left leg. Also the left ankle is making a click sound every time I take a step. The toes on the right foot is sometimes hurting, like someone sticks in a needle. Also I notice that my fingers on both hands sometimes feel numb, like a tingling feeling, especially if I sit down for a longer period of time.

May 2022: I see a rheumatologist who do not find any muscle disease in his examination and iin the blood tests. I am beginning to get neck pain and feeling of a lump in my throat, like when I eat it feels the throat is sore in the right side. The throat is also sore on the outside. I also get jerks in my neck during the day and my jaws are tight and sore. Sometimes I get small cramps in the neck. I also have start biting my lower lip and the inside of my cheek when I eat. Also I have tics at my left eye that comes and go. Fingers on left hand feels stiffer and I find it more and more difficult to write on my pc as I cant really control the fingers on the left hand. I am starting to mumble again and I constantly have this twitch in my chin, and a numb/spiderweb feeling in my cheeks/lips like they are kind of anesthetized, so my mouth feels stiff when I talk.

June 2022: My left hands start to hurt inside the palm when I try to lift up something heavy with the hand. The left hand is now also shaking when I am using a fork and I need to concentrate to be able to hold the fork. I also now started having small twitches in my left thumb muscle inside the palm. There is no doubt that my dexterity on the left hand has decreased since march 2022. I also now get daily jerks in my wrists, albows, toes and thumbs and both my hands are shaking/tremors when I hold them out in front of me. It also for sure feels like my left ankle and left hand/arm has gotten weaker during the 3 months, like I get fatigued faster than normal and my balance on the left ankle has for sure gotten worse, and I have a hard time walking normal because the toes on the left foot curl/cramp when I walk.

Next step is to get an MR of my lower left leg/foot in June and then get back to the reumatologist to discuss next step which propably will be to see a new neurologist. I am really scared of the above being initial symptoms of ALS and have recently started to take pills against anxiety, to be able to function during the day and to sleep at night.
Does this progression sound like ALS to you and should I fear that I have been EMG tested too early and that is why it comes out clean?

Apologies for the long post, tried to make it as short as I could, without compromising the progression part. Thanks a lot for taking your time to look at my post, it is highly appreciated. I wish you all the best and i am really grateful that you have the streength and energy to do this reading about what you are going through.

 

[lgelb]

No, this doesn't sound like ALS and I don't believe your EMG was done too early or on the wrong muscles. I hope that you have videoed your sleep, quantified it with an app or watch, and checked all your support surfaces, like pillow, bed, chair, sofa. Hydration and electrolytes are always worth a look, esp. since you do sports.

You acknowledge normal exams and tests, and that your anxiety kicked in when the thigh atrophy was acknowledged. And there seems no doubt that anxiety has contributed to all the issues you report since then. What the division is between what is from your mind vs. what is from your body, I cannot say (nor can you). But since they are undoubtedly linked, the easiest thing is to free the mind and trust that your body can follow, at least in part.

Pending any evidence to the contrary, I would act as if you had never heard of ALS, find a good physio in or out of your sports clinic who will monitor you, help you stretch, assess the dexterity you are concerned about, and help you feel more relaxed about all this. Think about it -- if a friend came to you with this story, would you advise them to start looking at wheelchairs, or try to scale back their distress? You can do that for yourself, with help from your family, if you tell them that is what you need.

Anxiety pills like benzodiazepines are not advised for most people. An SSRI or SNRI, if appropriate, can be helpful. My guess is that your sleep difficulties are not recent and contribute to your issues as well. Fragmented sleep is often a contributor when people first start to worry about their health.

Best,
Laurie

 

[LarsBB]

Hi Laurie

Thanks a lot for answering my questions, It is very highly appreciated. I will try to do what you recommend. I have already tried to convince my self that the below 5 bullets are good reason for not considering ALS. Are those the same reasons why you do not think it could be early ALS or do you see other reasons why it should not be ALS?

1) As far as I have understood ALS normally do not present in a foot/leg, both hands, an arm, and neck/face in a period of 3 - 5 months, it would normally take longer for it to spread across the body.

2) The fact that the EMG was clean in an already atrophied and weakened muscle in the thigh should be a strong prove that whatever is making my body feel weird and weak in some areas of the body is not ALS.

3) In all parts of my body where I felt weakness I have also had a numb/tingling feeling before the weakness appeared and pain after the weakness has progressed. As I read in this forum ALS would normally not present it self with sensory symptoms like tingling or pain (I am still aware that no progression stories are the same with this creepy disease).

4) I experience that my dexterity and streengt is decreasing when during certain functions, but it is not complete failure to do the function as many write it would be in the case of ALS. I am not sure how much I trust this as an argument, as I have read that some have had weakness but not failure as their first sign of ALS.

5) I most admit I am a little worried about the decreasing dexterity in my lef hand and cant realy figure out where it comes from, but I do feel a small pain and soreness in the left hand and the left arm and shoulder when I use it for specific tasks and I guess that would not be the case if this was ALS that would instead kill my ability to send nerve signals to the muscles, but would not affect my sensory system and cause pain.

Do you agree with my above arguments and do you see other arguments than the 5 above why this is not ALS?

Once again thanks a lot for taking the time to reply and make me feel better, it is really admirable.

 

[Bestfriends14]

Your questions about if you have or do not have ALS was kindly answered by Laurie. You don't have ALS for many, many reasons, so writing huge posts on a forum for those with ALS is only going to further fuel your anxiety. Take Laurie's advice, and please go live your life with your family. You don't have this disease, and you've been medically cleared of it, so be very grateful.

Take care.

 

[lgelb]

1-3 and 5 as written, yes, 4 could be a valid concern were it not for 1-3 and 5. Bestfriends has it right, live the life that others here cannot.