It’s been over 16 months since the stem cell transplant to put my MS in remission. And I’m still in remission.
Those of us in the HSCT family love to see how our hair is growing. I’m no exception I anxiously look forward to seeing pics of another HSCT vet, Lana, who had her transplant maybe 8 months before me as our hair is similar. I’m looking forward to my hair being longer again. It’s growing, and it’s still quite curly, much more so than the wavy hair I had before transplant.
In my last post I mentioned how happy I was to return to work and celebrated my one year “birthday” there. Now I’ve resigned my position and am working out my 30 day notice.
I have shingles. Well not anymore, technically now I have PHN- post herpetic neuralgia. Both are incredibly painful.
The second week of September I had what I thought were muscle spasms in my back- I thought it was an MS symptom of spasticity. So I took some baclofen. Then the spasms stopped but then my back was just hurting. I thought I had a tight muscle so I went for a back massage- the massage therapist said “I don’t feel anything” and I insisted it was there. A couple days later my back hurt so much it took my breath away. I started alternating the heating pad and cold packs for a couple of days without relief. I thought maybe I had a UTI and took a home test- negative….since the area of my back was my kidney I thought maybe it was my kidney. I decided I would go to urgent care the following day, Sept 18th, with a friend. I didn’t sleep well and at 3am I got up to look at my back as I felt I surely had a bruise or something….and that’s when I saw the shingles. I gasped and thought to myself “OMG that looks like shingles!” Working with the elderly I’ve seen them before. Then I remembered I had the heating pad wrapped around me and decided I must have burned myself. I was terrified that I could have shingles as I didn’t want to reactivate my autoimmune system to become overactive again. In the morning my amazing friend Kim took me to urgent care. My urine came back fine- not a kidney issue. I lifted my shirt and showed the nurse practitioner “oh see I also burned myself with a heating pad” and she said “no, you have shingles.” That was not what I wanted to hear.
She said to take a pain reliever. I did that for a couple days but the pain became unbearable- it feels like my skin is on fire and has glass shards sticking out of it and it is sore yet numb at the same time….just clothing touching my skin was unbearable. I had to work from home for a couple weeks. I was taking more than the recommended dose for Aleve- like twice the recommended dose. I called my primary care doc and asked for gabapentin as I knew it worked for me to numb my nerves a bit as I had used it during MS issues. She prescribed 300mg at bedtime. I tried to deal with that for a week in addition to the Aleve and it wasn’t working. I went to see my primary care doctor on Tuesday of this week and she increased the gabapentin to three times a day as well as some lidocaine patches for pain. The increase in gabapenin and the lidocain patches help tremendously. I was able to return to work yesterday- for now.
I had promised myself when I started my job that if I should develop shingles, or anything that could cause my autoimmune system to return to an overactive state that I would quit and find a new occupation. I love what I do. I’ve been working with seniors running assisted living facilities since 2000 which is the majority of my career. But it can be stressful and stress is very much the enemy of MS. When I informed Dr. Burt’s office (Northwestern clinical transplant doc) of the shingles the first question the study nurse asked was “have you been under stress?”
I gave my notice to my boss who has been nothing short of amazing. My last day will be October 24th. I’m not sure what my future holds after that. I enrolled in a course toward my MHA (Master’s in Healthcare Administration) degree and will do that online while I recover and figure out what I can do next.
When I reported to my HSCT 2016 Summer group that I had shingles I was amazed at how many others did too. I checked with the larger HSCT veteran community and some had shingles that cleared up and others get occassional pain while others are still in pain long after the shingles are gone.
I’m sure this is part of the “rollercoaster” we hear about. It’s a painful stop on the ride.
My advice to those going though this is to minimize your stress- at home, at work, in life. Just when you think you’re in the clear….something happens. Or not- we are all different. MS is a “snowflake” disease- no two cases are exactly the same. And no two HSCT cases are exactly the same either.
If you know someone with an autoimmune disease such as Multiple Sclerosis, Scleroderma, Stiff Persons Syndrome, Devic’s, etc…..contact Dr. Richard Burt at Northwestern Memorial Hospital in Chicago or look at clinicaltrials.gov to find a clinical trial.