A long, long month

[Marco]

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:

• 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!

[frosty123]

So sorry Marco

I have always read with gratitude your informative and upbeat posts and am sorry to hear of your current curve balls.

Having your Dad placed in hospice care, being stressed physically then add in the emotional pre-grieving process and you have an overwhelming situation.

If I may presume to share a few thoughts regarding having a loved one on hospice care (it has been my passion and career for 28 years) I humbly suggest;

Take advantage of your hospice team. There are 5 disciplines waiting, willing and available to you and your family.

I recommend families choose a hospice that is either affiliated or has an in-patient unit available for symptom management and/or respite care.

When friends offer to help, let them. Let them feed you, drive you, do your laundry, cut your grass, pick up groceries, etc. Invite them in to the process.

Pace yourself. Hospice admission/time to death can be a sprint or a marathon. Spell caregivers, eat, get fresh air. In the words of one of my very favorite authors Anne Lamott "Practice radical self care".

Know this, if your Dad needs you at his bedside in his final moments you will be there. I know this might be difficult to accept but it is true. Even when dad becomes unresponsive (we rarely, if ever, use the word unconscious) he will still be choosing his time. Some people like having loved ones there, others will wait for them to leave so they can sleep away privately. On this note know that the phone held to dads ear to say goodbye can be extremely comforting to all should distance, obligations, travel not allow in person visits.

Most of our loved ones will wait for permission from those that love them that it is ok for them to go. It is the final gift we can offer them. It can help release them.

If your Dad is ever in pain please call nurse at any time, day or night. Palliative care is there to make the process as free from physical pain as possible. Dying is hard enough work. There is nothing redemptive or helpful about pain at this challenging time.

Be at peace. It is about a lifetime of love....may those be your memories.

Maggi H

[Seasha]

Ah Marco - I was wondering where you've been and have missed your informative posts.
Curve ball is right and I'm sorry for all the difficulties you've recently been through...especially the news about your dad. I lost my SIL a year ago. She was in Hospice at the end and the amount of support by the palliative team was amazing. They were the most compassionate and caring people I have ever known.

Please take care of yourself. I'll be sending prayers for you and your family.
We are grateful for the wisdom and strengths you always share with us

[kelm10]

Godspeed

Marco,

You are like me. No matter how crappy life is for us, we have to look at the positive.

Many prayers for peace in all your struggles. Love that you are here for us to share your knowledge and Love.

As you well know, reach out to us when you need us.

[Boymom123]

So so sorry

Marco I am new here but I have read many of your past posts. I am so sorry for all you are going through and especially about your dad. I pray you find peace and the your MS decides to just take a nice long vacation and not bother you for a while.

[JerryD]

Sorry that you have had a rough time. I've been wondering about you. Missed you and I was getting a little concerned. Glad to hear that you are a 'curve ball hitter' ! Your posts are always appreciated. Keep cool !

[Marco]

Thanks everyone for the support!

I think I have figured out the acid reflux-related choking. It seems that Biotin was the problem. I stopped taking it today and the difference was apparent. I'm going to give it a few more days, but it does seem to be the culprit.


I hope you all are well and again thank you!!!

[pennstater]

Marco,
So glad you are back. Always scary when a big contributor is quiet. Look forward to your posts when you have more time.

Sorry to hear of your rough month, but am glad to hear you may have figured out a problem with biotin. Hope you have another option.

As for LTD, I feel your pain. My lawyer already warned me they will try to shut off payments early next year. I was fortunate to have small private LTD as well. What a difference. They have been paying for a year, reviewed all files, and determined they owe me for prior time off on relapses. I didn't know this or ask them to review, but they did. So telling all my healthy relatives and friends, get whatever policy you can afford thru them!


Prayers for your father, your family, and yourself. Mom was on hospices care last year briefly. They truly are angels.

Take care.

[REG53]

Marco, I am sorry you had such a rough month. I hope stopping the Biotin takes care of your choking. I am also sorry about your dad. I will say a prayer for you and your family.

Think you for the advice you gave and I also enjoy your post and glad you are back.

[hunterd]

((( Marco ))) my thoughts and prayers are with you.

[Marco]

Brief update

• My father is still alive. He has such a will to live it's amazing.
• A 98 year old friend died yesterday. He was like the grandfather everyone wishes they could have. He too fought like a champ to live for every remaining second.
• Stopping the Biotin did not resolve the acid reflux. Neither did the medications prescribed so the periodic choking continues.. They want me to continue the medications for another 2 months to see if the situation resolves. The growth on the vocal cord remains and will be removed and biopsied if it's still there on my next visit.
• I see a surgeon on the 6th to discuss my back issues.
• It's hot ... painfully hot. I am again becoming a prison in this house because it's simply too hot even with cooling vests.

I could use a break, but not sure that would look like. Maybe my friend would let me spend 2-3 hours in the restaurants walk-in freezer!!!

So yes, circumstances are not perfect and I can relate to all of you going through your own struggles. All that said, my goal is to make the most of today and appreciate all of my blessings. Like always, I wish you all well and have high hopes for our community.

[hunterd]

Marco, the saying goes, "when it rains it pours.", Pouring would be a sprinkle for you. You have all of my thoughts and prayers.

[MSLazarus]

About that choking thing....

I don't know if this will help but about two years ago I developed swallowing and breathing problems. It felt as if I could not even get water down my throat which felt constricted. It was quite painful when it happened.
That was often enough so that I lost a lot of weight.

After loads of tests..some of which were the same you had...there were no clear results. My neuro came to the conclusion that I had reached months before. Esophagus was having spasms.
My weight loss has mostly stabilized but these spasms are now part of the whole ball of MS symptoms I have.

Lots of people here really appreciate you. That is nice. Best wishes.

[bree2013]

Hi Marco -- So sorry you've been having to deal with so much more than usual.

Before I even considered seeing a neurologist, difficulty swallowing and choking / coughing attacks were some of my symptoms. Like MSLazarus I too lost weight because I was actually afraid to eat -- didn't want to have to go through all that. Also, I would get what I describe as "fluttering" and I actually used this term with the doctors. At first I described it as fluttering in my chest & then it felt like my throat, but then in hindsight I realized it was my esophagus spasming. I too was referred to an ENT and did the whole gammit of testing and found out no acid reflux but prescribed Nexium in case it would help (which it didn't)

My hope for you is that it goes away like mine did (hopefully soon). Mine went away after some months (can't remember) and before I started a DMD. After I was diagnosed I realized that issue, along with the many other strange things going on for quite some time, were part of a flare.

Marco, I've always appreciated your participation on this board, and it's nice to see you've joined the many other wonderful MSWorld volunteers.

All the best,
Bree

[Marco]

Marco, the saying goes, "when it rains it pours.", Pouring would be a sprinkle for you.

Brief update:

• I'm am STILL flushing from the Tecfidera even though my last does was July 5th. The flushing has gotten better, but it hasn't fully resolved. Fortunately, temperatures are dropping into the mid to low 90s now so that is a vast improvement.

• The ENT decided to change medications and the new one is working much better. This Thursday I am having a special physician-administered barium swallow. I then follow up with the ENT next Tuesday to set a surgery date. The growth on my left vocal cord will finally come out and be biopsied (at least that is what they are telling me).
• The VA has me set for a multi-hour cardiovascular monitoring session tomorrow to determine if I can go on Gilenya. If the cardiologist approves they will be admitting me into a local hospital for my first dose of Gilenya followed up by a 24-hour monitoring period. I know average people have a 6-hour monitoring period, but I'm special!
• The spine doctor decided I would be a good candidate for spine surgery at L4/L5/S1 so we scheduled for August 27th. August 17th, tooth pain signaled a problem. I had an expedited root canal on August 18th to try and clear the infection before surgery. In addition to part 1 of the root canal they put me on an antibiotic. Surgery (discetomy/spinal decompression) went well and they removed a number of bone spurs, cleaned up the area and repaired to discs. Unfortunately, there has been no symptom relief from the surgery and the leg pain persists.
• My next decision may be whether to try a spinal neuro stimulator to address the leg pain or to go back to pain management and get doped up. If nothing else, the neuro stimulator could be the next step into my conversion into the 6 million dollar implanted man.
• The tooth flared back up about 2 weeks ago and they put me on another round of antibiotics. The antibiotics caused a bout of thrush. After gong to the doctor for the thrush I ended up with an eye infection. All of this increased my stress level leading to a HSV oral outbreak. After a week of thrush wash, it still isn't controlled so I am waiting to hear back from the doctor. I guess I could start a round of valacyclovir, but my heart isn't in it. Three infections rolling at one time is enough for me.

• Wednesday I have round 2 of the root canal and hopefully this mess will be over.
• The capper was yesterday morning while getting ready for church. I'm not sure how it happened by I caught my thumbnail on something and separated about a 3rd of it from my finger. So I'm scurrying out the door with blood pouring, bandage material in hand and the thought that despite everything, I am still blessed.

Besides the medical madness, even more things are happening in other areas of life, but that is a story for another day. LOL!!! Hang in there --- it gets better (I hope!).