Advice needed

[ccslacum]

LHello All and thank you for allowing me to post. I graciously respect your thoughts on my situation. I’ll try to bullet point to be thorough:

January 2021: had a pretty bad Covid infection that lasted about 3 weeks. During the last week I had episodes of twitching and the sensation that my legs would not work. I had a very real episode of a sensation of my brain feeling almost psychedelic. After months I finally regained my strength and energy; however, PCP did refer to Rheumatolgy for elevated autoimmune titers. She said “Covid response” and ruled out lupus.​

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September 2021 I received the J&J vaccine​

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In 2022 I started having periodic episodes of dexterity with my computer mouse. This was followed by a weakness in my right foot when moving from the gas pedal to the brake. This would come and go.​

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Summer of 2023: Driving long distance my left leg began to tremble and vibrate. One episode and it didn’t happen again.​

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Fast forward to July 2023 I had a sensation of whip lash on my left side of my neck. That resolved only to be followed by numbness and pain down into my right arm. This was a feeling of heaviness and uselessness.​

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We are a very active family…I have 16 year old twin sons and a 12 year old son. We bike, hike, take very adventurous vacations and just this spring was hiking and ziplining the jungles of Costa Rica.​

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We were hiking the mountains of NC during the time I was having the sensation of the right arm/shoulder weakness.​

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We came home from vacation and I immediately saw an ortho who prescribed prednisone . All x rays were normal. During this week the pain worsened and even moved into the right arm. So I saw a chiropractor that I had seen before. Nothing helped.​

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Around the end of August I started waking up with leg vibrations. Uncontrolled. I saw my PCP who prescribed gabapentin and refereed to Neuro at my insistence. I was also experiencing severe cramping in my right calf and shin.​

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I also woke up one morning and had blood in my mouth from biting my tongue. My tongue still vibrates; although not as much. I do bite the inside of my jaw. My teeth chatter when I get really anxious. I’ll take a quarter of Xanax which helps some.​

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Getting into local Neuro proved very difficult so I went to Raleigh. After an examination he ordered 2 MRI’s and a Nerve Conduction and EMG. He observed brisk reflexes, normal Hoffman and Babinski. EMG and NC was normal. EMG was performed on my right side only and underneath my chin, not directly into my tongue. EMG was performed by a very respected Neurologist who trained at Duke. They said “no ALS” right now so come back in 4 months. And you need anti anxiety meds.​

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In the meantime I finally got an appointment with my local neurology office and was seen by a PA.​

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She observed brisk reflexes, and in her opinion Klonus of my ankles. She also noticed muscle wasting in my right hand and at this point I was starting to drop weight.​

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I explained that my right jaw line was shifting and moving food around in my mouth was becoming difficult. I also went back and noticed in pictures that around late 2022 the right cheek bone area “looked different” and my facial structure was starting to change. The fullness of the right side of my face was starting to sink.​

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In 2022 I also started Invisalign. In August 2023 my trays were not fitting the same and I noticed a concave area on my upper jaw and I could see bone.​

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The Neuro PA ordered a speech evaluation with swallowing which was “borderline normal” and suggested a modified barium swallow which showed “flash penetration with thin liquids”. I also saw an ENT who suggested “silent reflux”.​

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During this time I also noticed my heart rate was extremely elevated….I’m normally very low with HR and Blood Pressure. Both are elevated. I’ve worn 2 heart monitors which both have showed tachycardia.​

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PA also ordered Lymes, Mysathenia Gravis, Copper and other tests to rule out other etiologies.​

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In the meantime PCP ordered autoimmune titers which came back “higher than he ever seen” and said “raging lupus”. Referred me to Rheumatologist who I had previously seen before and she ruled out lupus. But suggested I head back to Duke for more evaluation.​

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Saw another Neuro at Duke (moved up from an April appointment) who said “no ALS”. And that there is no correlation between autoimmune antibodies and ALS. She discounted every symptom I conveyed.​

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After Rheum sent in referral to Duke I again went back and saw yet another neuro who said you have Functional Neuro Disorder” and not ALS.​

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Here are my symptoms:​

Leg weakness (even three stairs is tough)​

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I can’t exercise; I haven’t driven in months. I have what seems to be drop foot that goes and comes.​

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Elevated HR and BP​

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I’ve lost 20% of my body weight and down to 96 lbs. I used to be extremely athletic and now I’m a bag of skin and bones.​

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Intermittent calf “tightness and cramping”​

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Winded….lung function test was 79% on 10/23. After an albuterol treatment it was 80%.​

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I’ve had 2 ER visits for HR and short of breath:​

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Oct 4 bicarbonate level was 27 and Oct 17 it was 31​

PCO2 was 38.7 Oct 4th and 50.7 on Oct 17th​

Base Excess increased from 3.0 to 5.3​

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11/3 I also has a neurofilament test done and it was 2.18. Which I think is high for a 52 year old extremely healthy woman up until this summer.​

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Any advise is greatly appreciated. Im so fatigued I barely leave my bed. Even showering is a struggle. My kids are withdrawn from me because my husband tells them I’ve got a mental disorder. I’m afraid I’ve lost my family and my career. I’m desperate for answers.​

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I’m taking 25 mg Seroquel at night for sleep and trazadone 100 mg. Before this I was up all night with the strangest sensation all throughout my body. I would moan and groan and keep my husband up.​

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If you are still reading, thank you.​

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Any advise is appreciated.​

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Cindy​

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[Nikki J]

I don’t know what is wrong. Fnd is real and treatable. If that is your diagnosis be grateful

ALS doesn’t jump around like you describe your tests don’t indicate ALS. Also, if your nfl was labcorp which I believe is the only lab that reports in the range you mention that is an utterly normal value for your age

 

[ccslacum]

Hi Nikki, yes, NFL was Labcorp.

I’m just struggling with the symptoms that seem to point to ALS ( I believe Bulbar):

Excessive saliva and throat gurgling
Jaw and teeth alignment and trouble chewing
Vibrating tongue
Split hand syndrome and hand weakness and loss of dexterity
Leg weakness
Shortness of breathe (lung function was 79%)
Drop foot and trouble driving
I’ve fell multiple times (first time in May of this year) and have balance issues.
Lost 22 lbs since August

The Heart Rate and BP are very concerning. Ive been an avid exerciser since for 35 years and now unloading the dish washer wears me out.

I just feel like the EMG was done too soon. And maybe should have included more area of the bulbar region. My face structure has changed drastically in 2 years. As I’ve gone back and looked at pictures it’s frightening. Abd I have completely lost the muscle between my thumb and forefinger.

 

[lgelb]

Cindy, Seroquel + trazo 100mg is a pretty serious combo for someone without psychiatric issues.

Postural tachycardia and just plain tachycardia are very common post-COVID, which infects blood vessels and potentially any organ, often the brain, lungs, and/or heart.

A 22# lb weight loss and lack of exercise would certainly change musculature and could even affect the dental retainers' fit. There are clinics to help with physical rehab. They are often run by physiatrists.

I would discuss trying metformin (for post-acute COVID) with your PCP and starting a CCB or beta blocker to reduce your heart rate. And I would reconsider the psychoactive meds, which can cause many of the issues you cite.

There are other options for sleep, starting with re-evaluating your bed and room, an at-home sleep study, and depending on those results, a CPAP trial given your reduced(?) PFTs and SOB. If you are too hot or cold, that can be addressed with a low voltage heated mattress pad, fans, etc. If you are using regular sheets, something like bamboo is worth considering.

A dietician to whom your PCP can refer, can help you get the most nutrition/calories for what you feel able to eat, even if it's high-protein smoothies.

I agree that ALS is not the picture you're painting here. But it does sound worth digging into on the rehab/long COVID/complex diagnosis side of the house, maybe at UNC or Duke. If your PCP cannot support you in this, I'd find another.

 

[ccslacum]

Thank you both for your responses. So kind of you to take time to respond. I can’t help but think the first EMG didn’t pick up on anything because my symptoms are more Bulbar. My tongue vibrates, my jaw is misaligned, I have trouble with some foods. Extra mucus, swallowing issues, increased yawning. The shortness of breathe is most concerning especially with my CO2 and bicarbonate and base excess all elevated.

My right hand is definitely worse than it was in September when I had the EMG. The wasting is more pronounced, my pinky is stiff and in the morning when I wake up both hands are in a ball and stiff.

I’ve never had SOB or a high HR or BP and with my autoimmune antibodies so high the research I’ve done has found some correlation with ALS.

I’m so frightened.

Thank you for reading,
Cindy

 

[lgelb]

An EMG in ALS shows widespread signs of damage, Cindy, whether onset is bulbar or in the limbs. And it does not progress with the pattern and diffuse signs that you describe. You mention symptoms beginning in 2021 but worry about an EMG in 2023 being too early -- these don't line up. ALS onset is not insidious in this way.

Besides the neuro, neither a PCP nor pulmonologist would support an FND diagnosis on a whim. But gabapentin + prn Xanax + Seroquel + trazo (or any 2-3 of these, not sure what you are still taking) is a powerful combo with its own down sides.

The lab values you cite can be influenced by anxiety and hyperventilation, which in turn can also produce tachycardia (which is very treatable and can improve other related things). Feeling generally unwell as you describe, more likely systemic than anything, brings us back to potential long Covid and other post-acute manifestations that anxiety may be amping up, even to the level of overriding the bite trays.

Again, there seems no relationship with ALS. Focusing on that in the face of exams, tests, and history that says otherwise will only delay your finding ways, in coordination with your team, to improve manifestations amenable to improvement, whether a nutritionally-dense diet, better night guard or rate/hypertension control, breathing exercises, or a sleep study, all suggested above, among other options.

Sometimes no clear overarching explanation exists, but there are support groups and reasonable approaches to FND. I would suggest including counseling, since the mind often rules the body, to help stress-test the notion that you have undiagnosed ALS and jump start your ability to try non-drug approaches outlined above, especially since you self-report as frightened even with psychoactive drugs on board.

 

[ccslacum]

Thank you, lgelb, I appreciate your thoroughness.

In January 2021 I had a horrible time with Covid…9 days of fevers, headaches, etc. During week 3 I had the neurological symptoms…..difficulty walking. It was almost like I had to concentrate and “tell my legs to work”.

No other symptoms in 2021 other than fatigue and hair loss and elevated autoimmune labs.

Fast forward to 2022 it when the right hand dexterity started followed by right foot. I blew both off as nothing. Spring of 2023 I noticed changes with the right hand, middle finger and ring finger knuckles were enlarged and the pinky was separating from my hand. One of the PA’s I saw mentioned wasting b/w thumb and forefinger.

July and August is when the “whiplash” sensation started followed by right arm weakness. That’s when I saw ortho. Followed up with neuro for EMG and Nerve conduction. During this time I started having nighttime tremors in both legs nightly for several weeks, followed by calf cramps and shin tightness in right leg. So severe I would use a heating pad. This is also when the tongue biting and jaw tremors started.

EMG was end of September 2023 really 2 months after the prevalent symptoms started which is why I assumed “too soon”.

Currently I am taking 100 mg Traz for “sleep” and 25 mg Seroquel and 20 mg Cymbalta.

Cindy

 

[lgelb]

My response re "not too early" stands whether your perceived weakness began two or three years before the EMG. A lot of people with ALS are dead by then. Issues such as you present as symptomatic of ALS are well visible on an EMG due to motor neuron damage.

I could ask when you started each psychoactive drug, and you would tell me that they were all responses to symptoms, but the reality is that this combo is unsafe at any speed, absent indications for it that you do not have. See therapeutic duplication and interaction warnings below:

Drug Interaction Report: Cymbalta, Seroquel, trazodone

View detailed report of drug-drug and drug-food interactions for Cymbalta, Seroquel, trazodone

www.drugs.com

In addition, 100mg of trazo is too high for sleep to be the reason, but trazo at that dose has been superseded by safer, more effective agents at the doses used for depression.

Whoever is writing these rx for you and not getting you into counseling if you are really obsessed with ALS (hopefully not, but some people are) is doing you a grave disservice, because the side effects and risks you are assuming don't get better over time and you have plenty to worry about as is.

It's like this. If these are primarily physical issues and your anxiety is a natural response to them, then why do you need 3 psychoactives? And why aren't you and a good PCP addressing the approaches above to these physical issues pending a dx that may or may not cover them all? (It's not going to be ALS.)

If this is anxiety run amok, torching your sleep and wellbeing, why would you not be in counseling to address something that will ruin your life if you let it?

At the least, counseling can help you see what physical issues remain once you control for what might not be more psychogenic.

You see the paradox. It's up to you to find the right resource(s) to solve it; we cannot.

Summing up: the EMG was not too soon. ALS is not being overlooked. There are many approaches to your symptoms that could help you feel better, that you do not seem to be pursuing. I am closing this thread to help you do so.