Noticing speech changes in the last few days

[Jslim86]

So I feel like I have been noticing speech changes in the last few days . I did have a lot worse when I was on a medication to the point I had trouble spitting out what I wanted to say. Now not on those meds after months later In the last few days especially I’m noticing more lisping that I had in the past. My family and coworkers don’t hear it.

I’ve had a handful of concussions at 32 years old right now and I worked around leaded airplane fuel for a summer into fall I’d say 4-6 months . I do get the fasciculation in my legs from time to time and it’s been in my arms too. I also have a lot of arm pain the last 3-4 months. I’ve had difficulty swallowing for years and dry mouth and dry eyes for at least 7 years so I doubt that is related.

But with the handful of concussions only 1 diagnosed and working around leaded gas for probably 5 months and another not leaded major airport for another year should I be worried about my environmental exposures causing als or having als at an early age right now? From what I understand being exposed to lead is a risk factor and I was also thrown in the lake where I’m sure a fair amount of the gas got in because it was a float plane harbor. It was summer of 2006 I worked there.

I feel like I’m getting weaker but I also only weigh 150ish lbs and I’m 6’3 with a diagnosis of NF1 which can have muscle weakness. I do feel like I’ve lost weight and I know I have since October of 2018 because I weighed 170lbs but before September 2018 I weighed basically what I do now. I believe that to be meds and me being in a clinic where I ate 6 times daily. I do have severe anxiety which I also know can trigger the fasciculation.

I’ve had some lung issue lately too but my pulmonologist says to wait until October to do any work up unless I want a biopsy now. My DLCO score was low but he still says lungs sound clear as do other drs

 

[Jslim86]

I have severe medical anxiety and OCD which I guess has high levels of glutamate

 

[lgelb]

You think you have lisping that others don't notice. Sincerely, try hydration and lip balm. That could also help swallowing.

The rest of what you report seems quite likely related to NF1 and/or anxiety, and/or poor sleep, as you acknowledge. It's always worth it to get a handle on your fears, just to live better.

If you have lung issues, as you know, exposure to any irritating substance such as hydrocarbons can make them worse. But many of us have had such exposure, and very few people get ALS. So I would not be worried about ALS from that standpoint.

All in all, you're in the wrong place here -- a good thing.

Best,
Laurie

 

[Jslim86]

Thank you. I do fear though because I have OCD it does come with higher glutamate. So my chances might be higher. I will try more water but my mouth is always dry even if I drank a gallon a day.

 

[lgelb]

There is no evidence that OCD/glutamate relate to ALS onset.

There are sprays and cough drops for dry mouth. It may relate to the hydrocarbons you are breathing, allergies or anything else.

Have you been tested for Sjogrens?

 

[Jslim86]

There is no evidence that OCD/glutamate relate to ALS onset.

There are sprays and cough drops for dry mouth. It may relate to the hydrocarbons you are breathing, allergies or anything else.

Have you been tested for Sjogrens?

Yes I have well they botched the most recent lip biopsy but 6 years ago it was negative the ENT who botched the recent one says he feels it’s not necessary as my ANA test was negative. Also my Rheumatologist says she feels Sjogren is not likely either. Up to me if I want the lip re cut again . Thanks for letting me know about the OCD and glutamate as I have read glutamate is higher in ALS patients. Also glutamate was found higher in people with neuropsychological condition like depression and Ocd . But if there is no known link I can take solace in that for now.

 

[Jslim86]

I also do notice some tongue twitching when I stick out my tongue too. My roommates doesn’t move at all

 

[Nikki J]

Tongue twitching in general is no more wortisome than anywhere else. It is also even more common for a tongue to twitch when you stick it out. Please read or re-read the sticky post read before posting as this was discussed there

 

[Jslim86]

Tongue twitching in general is no more wortisome than anywhere else. It is also even more common for a tongue to twitch when you stick it out. Please read or re-read the sticky post read before posting as this was discussed there

Fair enough I had my roommate watch a bulbar ALS vid on YouTube and then look at mine she said no where near the same said some movement but not like that. Thanks for the help.

 

[Jslim86]

Update tongue seems to be ok for now but now I’m getting a lot of fasiculations and cramping in my legs. The fasiculations have been around for just under a year now. Had a clean EMG last August but they are back in full force now and the last few days a lot of leg cramps and some intermittent bicep pain. Again I do have very bad anxiety so that could be causing some of this but not the cramping I don’t think. I work as a cashier on my feet all day so that could be it too but I’m struggling to wait to see a doctor on the 3rd of June... I hate waiting.

 

[lgelb]

Again, we see no reason to worry about ALS. Standing all day doesn't help anyone's legs or back. Try a gel mat -- you can prob get a discount on Memorial Day sales. Also, do some stretching before and after your shift. The 3rd is not far away, but I hope assuming you get a good report that you are considering how to address your anxiety over the long haul.

 

[Jslim86]

We do have mats they aren’t the greatest. I feel like my tongue is kinda moving in my mouth as I type this but *shrugs* I spent 3 months in anxiety treatment and it actually made me worse then I was before. But again my coworkers deny my speech changes to them and so does one of my friends for the past 8 years so I guess the neurologist will have to be the final say though they are a new one and probably won’t be able to do another EMG right away

 

[Jslim86]

The other thing is Iight have additionally lost weight from my original post. I do eat too usually 3 times a day sometimes more. But one scale had me at 149 the other day and others will say 154 152 so I don’t know but I do eat and seem to be dropping. What is the lifetime risk of als anyway I have seen 1 in 350 to my doctors saying it’s a lot higher than that. 1 in 350 seems fairly common to me.

 

[Nikki J]

Dry mouth , weight loss . Diabetes?

The risk for a 32 yo is very very low. Lifetime risk is around 1 in 400 but the risk rises with age. My risk as a genetic carrier was 98-100 in 100 Want to trade?

Really, we can’t keep resassuring you. Let us know what the doctor says

 

[Jslim86]

This is why I worry

• Chemical imbalance. People with ALS generally have higher than normal levels of glutamate, a chemical messenger in the brain, around the nerve cells in their spinal fluid. Too much glutamate is known to be toxic to some nerve cells.

People with ocd depression anxiety seem to have high rates of glutamate no diabetes that I know of but confirmed OCD depression and anxiety. Also due to Neurofibromatosis type 1 I have tumors all over my spine I probably can’t have a spinal tap to check my glutamate levels even if I wanted to.

New Horizons in OCD Research and the Potential Importance of Glutamate. Can We Develop Treatments That Work Better and Faster?

New Horizons in OCD Research and the PotentialImportance of Glutamate Can We Develop TreatmentsThat Work Better and Faster?By Michael H. Bloch, MD, Vladimir Coric, MD, and Christopher Pittenger, MD, Ph.D.Michael Bloch, MD, is a Fellow in the Solnit Integrated Program

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