The past several weeks have been tiring and hectic. I post a lot about new treatments and try to remain positive, but I do struggle like the rest of you. Here's a brief recap of the recent past:
Over the past 2 weeks, I have had 7 choking episodes. This is completely abnormal for me and it definitely got my attention. I notified my neurologist what was going on in case this was MS-related dysphagia or similar symptom potentially indicating a flare up. I was at my doctor’s office at 7:30 am the day after Memorial Day.
· A physical exam was conducted without any abnormal findings.
· A barium swallow was ordered and it came back normal.
· I was then referred to an ENT for examination.
The ENT found a growth on my left vocal cord, but did not believe it was related to my choking episodes. He believes the growth is not cancerous, but deferred action on the growth for 30 days. At that time, if the vocal cord growth remains it will be surgically removed and biopsied.
After completing the examination, he believes the choking episodes are being caused by acid reflux. The theory is that when acid backs up my vocal cords close off to protect my airway and it’s like I am choking/suffocating. He prescribed two different medications to try and control the suspected acid and I go back in 30 days for a reevaluation. I am glad there seems to be a reasonable and treatable reason for my choking episodes.
During this time, my neurologist ordered MRIs to determine if any lesion activity could be detected. My T&C spine MRIs came back unchanged. The brain MRI showed a new lesion; the first new lesion detected since starting Tecfidera in 2013. It would also be easy to get upset about the new lesion, but one lesion in over 2 years is something for me to celebrate.
On top of all of my medical issues; my dad is in hospice, the long-term disability company is trying to cancel my benefits, the VA is causing excessive grief, I’ve slept 3 hours in 2 days, after the Texas flooding summer is finally here and I am melting, and a slew of other issues are going on.
Despite everything, I am feeling blessed. I had a nice dinner with my wife and she’s here next to me. I could get upset about all the troubles, but the reality is we’re making it through them all. I can still say God is good and put all of these issues in the “temporary” category.
I hope this is a reminder to pay attention to your symptoms and make note of new ones. Keep your medical teams in the loop. Don’t assume everything is MS-related, but don’t rule it out either. Most importantly remember that life is precious and fleeting so focus on the important stuff. I am very grateful for MSWorld and the wonderful members that make this difficult journey that much easier. I wish you all well!
- I finally finished my last therapy session from my January wreck. The doctor believes I will have long-term problems with my right ankle as 4+ months of therapy did not resolve the issue.
- I am being treated for seborrheic dermatitis. This is another life long condition with flare ups and hopefully long remissions. The dermatologist said it’s caused by a wonky immune system just like Parkinson’s patients get. I get to add that to my abnormal 2103 MRI that was similar to Parkinson's patients.
- While my baclofen pump resolved the vast majority of my spasticity my right leg pain remains unresolved. I am going for additional testing as this is looking like sciatica.
- I am having horrible paresthesias where I feel like I am in a cold sweat. Cymbalta is not touching them. I bloat on Gabapentin and Lyrica and put on 30 lbs in 3 months ... I am still trying to lose the last few pounds from the last time I was on these meds.
Over the past 2 weeks, I have had 7 choking episodes. This is completely abnormal for me and it definitely got my attention. I notified my neurologist what was going on in case this was MS-related dysphagia or similar symptom potentially indicating a flare up. I was at my doctor’s office at 7:30 am the day after Memorial Day.
· A physical exam was conducted without any abnormal findings.
· A barium swallow was ordered and it came back normal.
· I was then referred to an ENT for examination.
The ENT found a growth on my left vocal cord, but did not believe it was related to my choking episodes. He believes the growth is not cancerous, but deferred action on the growth for 30 days. At that time, if the vocal cord growth remains it will be surgically removed and biopsied.
After completing the examination, he believes the choking episodes are being caused by acid reflux. The theory is that when acid backs up my vocal cords close off to protect my airway and it’s like I am choking/suffocating. He prescribed two different medications to try and control the suspected acid and I go back in 30 days for a reevaluation. I am glad there seems to be a reasonable and treatable reason for my choking episodes.
During this time, my neurologist ordered MRIs to determine if any lesion activity could be detected. My T&C spine MRIs came back unchanged. The brain MRI showed a new lesion; the first new lesion detected since starting Tecfidera in 2013. It would also be easy to get upset about the new lesion, but one lesion in over 2 years is something for me to celebrate.
On top of all of my medical issues; my dad is in hospice, the long-term disability company is trying to cancel my benefits, the VA is causing excessive grief, I’ve slept 3 hours in 2 days, after the Texas flooding summer is finally here and I am melting, and a slew of other issues are going on.
Despite everything, I am feeling blessed. I had a nice dinner with my wife and she’s here next to me. I could get upset about all the troubles, but the reality is we’re making it through them all. I can still say God is good and put all of these issues in the “temporary” category.
I hope this is a reminder to pay attention to your symptoms and make note of new ones. Keep your medical teams in the loop. Don’t assume everything is MS-related, but don’t rule it out either. Most importantly remember that life is precious and fleeting so focus on the important stuff. I am very grateful for MSWorld and the wonderful members that make this difficult journey that much easier. I wish you all well!
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