When to see Neuro?

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Kb77

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Hello Everyone,
Thank you for taking the time to read this. I am a 44 yr old wife and mother of 3. It all started Feb 2020. I was walking with a friend after doing the keto diet for 2 months and I noticed the ball of my left foot felt different. It had kind of a loss of sensation or numbness. I didn’t think anything of it until it didn’t go away.

Fast forward to the summer of 2020 and I asked my friend who is an orthopedic surgeon what he thought. He said it was probably nothing, but if my vision changed I should see a doctor. Well, my vision changed so I went to see my GP in Nov 2020. I told him about the numb spot and then the vision issues. He ran blood tests and it came back showing I had low testosterone. He told me to supplement with DHEA and didn’t think I needed an MRI right now, but I could go to the eye doc and see if I had optic neuritis which is a sign of MS. I went to see the optometrist and she simply said my vision was declining a bit due to age.

I still thought I felt off balance and continued to have a numb spot but never fell or had anything happen that would require hospitalization. I started to do the auto immune protocol lightly and stopped the keto diet in an effort to fix the situation. Then, in June of 2021 I noticed that my right index finger tip was numb or had a loss of sensation. Again, I consulted with Dr Google and pretty much saw that this was not good especially coupled with the foot issue bc they are on different parts of the spine which means it’s probably not just a pinched nerve. So recently I went back to my GP for more blood tests. Blood work looks fine and testosterone has improved. He was unable to see any clinical weakness , but didn’t have anything to check nerves or reflexes. He said he would refer me to a Neurologist but wasn’t sure if they would do anything yet because there is no obvious signs of weakness yet. He said I could go if I wanted to.

Well, since that visit I have had cramps in my calves and today after walking for an hour I noticed that all of my muscles twitch. This has been happening for some time but I just now linked it to my other symptoms. All this time I just thought it was my muscles getting stronger or something.

Here is my question, why go to neuro now? If this is indeed ALS..things will only get worse and I will most likely experience drop foot or failure soon and since it is terminal there is nothing they can do. In addition, it will be easier for them to diagnose if I’m at that stage. Shouldn’t I wait till that happens? I have read the post about symptoms where it says numbness without clinical weakness means nothing, but then I read articles like "The Life-Threatening Disease Women Aren't Supposed to Get" which make me question whether numbness means nothing. I just don’t want to spend a ton of money on testing when if I do have this I will have to spend it on a lot of disability aides.

I am sorry if this post makes someone mad, and I don’t believe this is anxiety bc these are real symptoms that my body has displayed. For now I have gone to see a chiropractor which I have never done before as kind of a step before Neuro. Thoughts?

One more thing..I have been taking a probiotic, vitamin B12, vitamin C, and Vitamin D regularly. Also, I have not been sick in years. Not even with the stomach bug or the flu in probably 13 yrs. Just a very minor cold here and there.
 
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ShiftKicker

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Hi there-

It's not clear if you've read the Read Before Posting post or not. In it you'll find a lot of information about twitching, sensory issues, etc. and what points away from a motor neuron disease. You make a lot of assumptions based on sensory issues, plus you are planning WAY ahead of yourself with regards to disability and so on. This denotes a fair amount of health anxiety and it might be a good idea to address that while also speaking with your doctor about any physical causes of your symptoms.

We always recommend folk seek medical attention first if they are worried enough to post on a forum for those with ALS and their caregivers. That is the place to start before assuming a terminal disease.

Take care
 

Nikki J

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Numbness isn’t an ALS symptom. ALS is a disease of motor neurons not sensory ( feeling) ones which is why weakness is the hallmark symptom. If your gp wants you to see a neuro I would guess it would be because of a faint question of MS

twitching without weakness is not worrisome for ALS and something like 70 percent of human twitch mostly benignly. I don’t think people are “ supposed” to twitch from MS but I know a number of MSers say they twitch perhaps coincidentally
 

Kb77

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My GP didn’t think it was MS bc he said the symptoms weren’t subsiding. He says they come and go with MS. I’m assuming he is referring to Relapsing and Remitting. I guess Primary or Secondary MS is an option.
 

Kb77

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I have scheduled an appointment with Neuro but they cannot see me until December 8th. For the past couple of weeks I have been dealing with I guess twitches or fasculations (?). It feels as though a goldfish is swimming all around my body. I don’t drink or smoke nor drink caffeine. I also don’t take any medications at all. My blood work was fine in August and so I am at loss as to what could be causing this. If it was anxiety then why do I experience it at times when I am calm like at night watching tv? I try to not stress about this, but every time I feel a twitch or a tightness in my legs I feel as though maybe it means my motor neurons are dying. Am i just waiting for the weakness to show up in a couple of months? I may have clinical weakness now, but just don’t know it. I am unclear as to what else this could possible be. Any advise would be appreciated. I just read the post Musings on Fasculations and was wondering why that thread was closed? I would like to comment on that post. Thank you for your time and please don’t bite my head off.
 

ShiftKicker

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Inactive threads are closed automatically after a certain time. I would like to note that those who are not diagnosed with ALS/MND or are caregivers are required to stay on their own thread in this subforum only.

Fasciculations/twitches are caused by so many things. The type associated with ALS are detected via EMG. There's further explanation in the Read Before Posting thread in the forum as well if you'd like to read more. Unfortunately, the folk here can't provide much more information than has already been given and this is when working with your doctors will get you the most information and a direction in which to look for further answers.

Having to wait while experiencing worrying symptoms is definitely difficult and can cause a fair amount of anxiety, I definitely sympathise. It may seem counterintuitive, but searching for answers in forums such as this can actually increase that anxiety because you are searching in the dark and turning up frightening things that may not actually apply to you.
 
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affected

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Truly you are making this happen to yourself and determined not to listen to what we say here.
I'm not biting your head off, just stating that we have a lot of experience, and you don't have to listen, but you can't expect us to engage any further.
Please do let us know when you have seen the neurologist.
Any further concerns you have before then need to be taken to your doctor so you can be clinically examined. All the best.
 

lgelb

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I doubt the numbness is constant. Is it?

Lots of people have spine damage at more than one "level," which means that multiple limbs or areas can be affected. Watching how your sleep, sit to keyboard/on the couch, etc. can be helpful. You might need new shoes, a new chair or pillow...

Restless legs at rest suggest a possible treatable movement disorder, esp. if your sleep is being affected. You can ask your PCP about being screened (just a few questions).

Anyway, you have received excellent advice as regards ALS. You've said nothing that makes anyone here think you might have it, and that's a very good thing. Stop reading. Keep living.

Best,
Laurie
 

Kb77

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Thank you to everyone who took the time to read and respond. I will just “keep living and try to stop reading” while I wait for my appointment with Neuro. I can’t imagine that I am doing this to myself, but maybe?? Thanks again.
 
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