anxiety, quick progression and Sjogren Syndromes

wtici

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My mom was misdiagnosed with cervical spondylosis for almost 3 years for the symptoms only on her right arm, wrist and fingers (loss of strength and range of movement, finger stiffness, some atrophy, but no experience of any pain). She was finally confirmed with ALS in March this year. Within less than 2 months of diagnosis and treatment, her condition has taken a drastic turn

Below is a brief timeline of progression:

End of MARCH - Diagnosed with ALS. in addition to Riluzole, she was also put on Cyclophosphamide. She felt burning sensation through the whole body and suffered insomnia for a few days due to the bad reaction. This probably caused her anxiety. Her doctor then stopped Cyclophosphamide.

APRIL - Diagnosed with severe anxiety and put on medication Cymbalta and Lorazepam, started experiencing dry mouth, extreme fatigue

End of APRIL - had low fever for a day or 2, started feeling joint pain on whole body, muscle pain on both legs and stiff neck.

MAY - The leg pain persisted after her fever retreated and became so bad that the strongest dose of the pain medication didn’t help. She was brought to ER and was given a shot to ease the pain. During these days, she also experienced very painful leg cramps, numb feet and had fallen a few times. Dry mouth worsened and diagnosed with Sjogren Syndrome.

Now, she is experiencing short breath, her doctor recommended to use ventilator if it doesn’t improve after 3 months. After a period of medication, she has few cramps and little pain, but her feet are still numb. she needs to be on the cane and can not walk long. Her doctor said that all these leg pain, cramps and feet numbness are not symptoms or sign of of ALS progression, instead, are caused by her anxiety.

I don’t know what to make of her doctor’s explanation on the quick development, part of me want to believe it but the other part of me don’t want another mistreatment. Then what about Sjogren Syndromes? How come did this happen? Is it possible that these complications are caused by the medication? After 2 months of learning about ALS, I quickly realized that every PALS is different in terms of onset, symptoms, complication, progression and treatment. I know that we should trust our doctor in most cases, but getting any input or advice from PALS in this forum who has similar experience or some knowledge on the explanation would be very helpful in making informed decision and prepare for what’s ahead.

Thank you all in advance!
 

ReginaS

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The husband of a friend of mine also had ALS and had the worst pain and cramps. This lasted for months on and off. They had to go to the emergency room many times and she complained to the ALS clinic about being left alone with it.

I believe it got somewhat better when they involved palliative care and as time passed. Her husband was on several very strong pain killers. The pain was strong.
A pain center is also an option - or hospice. Palliative care physicians might have access to different kind of pain medications. My friend had the impression that he neurologist and pulmonologist in the ALS clinic did not now what to do. Hopefully you will be able to find a good solution.
 

Clearwater AL

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Regina, I believe he possibly is in China.

His Bio, Country: CN... is the abbreviation for China. Things maybe different over there.

With the time zone difference it may be tomorrow before he replies
.
(It's 12:47AM Eastern DST here... it's 12:47PM there.
Unique note... China has one time zone, even though China spans five geographical
times zones.)

It may be a mistake but he appears to have above average text/typing skills.
 
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nona

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Is your mom being seen by a neurologist with expertise in ALS or MND? Because it doesn't sound like it.
 

wtici

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thank you all for you response!
My preferred pronoun is “she/her” :)

yes, my mom is in China. I am a resident in NC. She is seeing Neurologist experts with ALS experience in Beijing. Right after her diagnosis, I wanted to bring her here to see specialist Dr Bedlack from Duke ALS clinic. But of course with the drastic turn, she is not physically fit to come, besides, US consulate in China is suspending visa service for regular visitors. I can not go back to visit her either. I have US citizenship and would need a Chinese visa to return. Likewise, Chinese embassy here has also been suspending visa service, which is really disheartening and frustrating, I can not imagine the scenario when I am finally able to see her, she would be beyond of what I remember her as an always active and energetic person.

I did send email to Dr Bedlack about anxiety. Despite that my mom is not his patient, he is very sympathetic and kind enough to reply to me that he suspects “anxiety and stress can contribute to the development of ALS and may also contribute to faster progression. However, this is just a theory. I have not seen it proven yet.”

Right now, the main issue for my mom is the numbness of her feet and Sjogren Symptoms. The cramp and pain have become minimal.

I question why her doctor gave her Cyclophosphamide at the beginning. That medication is chemotherapy drug for cancer. I believe the bad reaction caused my mom’s anxiety.
 

lgelb

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I'm sorry to hear about your mom's long road to diagnosis. I believe that anxiety can contribute to progression if only because of the energy expenditure. But that begs the question of whether this is true clinical anxiety, or if it is more situational as you suggest.

If your mom really has Sjogrens, of course, she should be treated for that as well, by a rheumatologist. At the least, it should be confirmed by that specialty whether she has it or not.

I too would question cyclophosphamide for ALS, but what's done is done. There is much that can help your mom toward maintaining quality and quantity of life as long as possible. If her breathing is poor, she should be on BiPAP, so as to delay progression of what is typically the fatal complication of ALS. Do you have any pulmonary function test results? The EMG report? Whatever translated reports you can de-identify and post might be helpful.

Cymbalta can be associated with nerve pain and/or numbness as a side effect, though it is a drug that requires careful and slow discontinuation should that ever become desirable. I would also be wary of continuing it with a benzodiazepine at the same time. I can see that the lorazepam might be prescribed to cover the period before the Cymbalta could take effect, but these are powerful sedatives that obviously affect breathing, energy, balance, and appetite, among others, and can also be associated with numbness. Thus, they are usually reserved for later stages if at all.

Of course, it can also be true that the numbness is associated with the chemo. She has had three drugs on board that can cause numbness. It takes a lot of anxiety (for which she is taking two medications) to be able to blame falls on it, consistently. So I am skeptical of that theory as are you. But the benzo is certainly associated with them, as is ALS progression.

If your mom was not an anxious person before all this began, I would try to determine when you have video calls with her if she really needs a benzodiazepine, if the numbness is constant or what can trigger it, whether she could benefit from counseling, etc. The family members that are supporting her in China can weigh in on this as well. Sleep, hydration, nutrition, avoiding falls by using whatever mobility device is needed, and getting her BiPAP if indicated, can all help her have a better life.

Best,
Laurie
 

nona

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Laurie, could her dry mouth also be med-related (or anxiety) and not Sjogren's?
 

lgelb

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Sure. But we wouldn't normally dx Sjogren's just from a dry mouth! It's a combination of labs and symptoms/history.
 

nona

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I also question the advice to postpone non-invasive ventilation. Lung function tests should be able to discern functional need vs anxiety induced.
 

wtici

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Laurie, thanks for writing the long post at night!

my mom had lip biopsy and blood test, she mentioned that both test are not normal and I know that the ANA was 320 and down to 160 in the last test probably due to medication. So it was diagnosed that she has Sjogrens. Thanks for chiming in, Nona. I had the same thought as you, thinking the dry mouth is the side effect from Cymbalta when her symptom started.

Laurie, you mentioned benzodiazepines a few times, but she is not taking it. Her daily medication now is Riluzole twice, Cymbalta during the day and Lorazepam at night as sleeping aid. She was taking Azathioprine for her dry mouth for a few days, but discontinued due to the damage to her liver. I don’t remember what she is taking now.

As for your comments on her numbness, are you suggesting that the combined medication could be the trigger or resultant side effect rather than anxiety itself being the cause? She was very anxious during chemotherapy drug treatment which was palpable from her tone when talking to her. Then she stopped it and started taking medication for anxiety, she felt better and slept better for a few days until the leg pain, cramps and numbness started crushing on her. During that period of time, I didn’t hear anxiety, just pain and exhaustion. So I don’t buy the anxiety being the culprit.

Cymbalta is mainly used for depression and anxiety, but can also be used for relieving nerve pains. I just talked to her, she said she doesn’t have pain anymore, could be the work of Cymbalta? Her feet numbness is a little better, which is comforting to hear.

thank you to Regina for suggesting palliative care. I learned that ALS treatment here in US is a multi-discipline holistic approach involving physical therapy as well as other aspects. I thought maybe physical therapy could help her pain, However she was told not to do it as it will cause further damage to the nerves. Maybe it depends on individual conditions. What is the general advice on this?

my mom did all the test for the diagnosis, EMG, lumbar puncture, MRI. I will post them once I have a copy of them.
 

lgelb

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Lorazepam is a benzodiazepine.

I am not suggesting anxiety per se is the entire cause of numbness. I am suggesting that three drugs she has had on board might contribute, or fatigue secondary to poor breathing. Hyperventilation secondary to anxiety can also cause breathing problems and numbness.
 

wtici

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So almost 2 months after my last post, my mom doesn’t have leg pain anymore, but still have numb feet, right foot is slightly better than the left one. She describes it as if she is wearing socks. She has fallen 3 times due to the numbness not allowing her to feel the slight level change.

Her doctor told her that the numbness is peripheral neuropathy, not necessarily related to ALS progression. I looked up peripheral neuropathy, Sjögren’s syndrome and certain chemotherapy medication are among the causes described by Mayo Clinic. She had both as described in my previous post. The current medication for her nerves doesn’t seem to do anything to reduce the numbness, more like tonic supplementI asked her to seek another doctor for alternative treatment, but she thinks the damage is done to the nerves and is not hopeful or motivated to do that.

Has anyone had similar experiences? Is it fair to assume that peripheral neuropathy can speed up ALS progression even if the numbness per se is not ALS symptoms as her doctor stated? What are treatment options for it?

Not being able to return home or bring her here due to Covid and her physical condition, I feel useless to help her other than seeking some advice or support in this forum. I truly appreciate your time and some of you taking great effort to respond!
 

lgelb

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Peripheral neuropathy does not affect nerves the same way that ALS does, but can make it more difficult to move, and therefore could magnify the effects of the damage caused by ALS. There are drugs such as gabapentin that may help, but can interact unfavorably with Cymbalta, if she is still taking that.

Having the right shoes or slippers is important to avoid numbness, pain, and swelling. There are brands that are PN-specific. Daily leg elevation may help reduce edema as well.
 

wtici

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Thanks Laurie!

My husband had acute sciatica 2 weeks ago and went to see a physiatrist today, who happened to prescribed gabapentin for him. I did a quick research about it, most people say it is more effective for managing the pain than numbness. My mom doesn’t have pain anymore, just the numbness. From most of what I read about numbness associated with peripheral neuropathy, sadly, it is unlikely it will get better.

For her, it is probably the best to focus on not falling again.
 
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