18 months post HSCT…more twists on the roller coaster of recovery

FIRST…if your’e seeing this on Facebook please read and not just like my new pic!¬† ūüôā¬† yes, my hair is growing!¬† Still no haircut- yet.¬† I am curious how long it is straight but I think it would look weird.

It’s been a year and a half since transplant.¬† I’m so tired of hearing about “the roller coaster” and reminding people in the clinical trial about it myself….I’m ready for this ride to come to a halt.

18 months post 2

I was prepared for some challenges and ups and downs….but I thought they’d all be MS related.¬† It never occurred to me that I’d encounter other health issues.¬† And the MS is still really good!¬† I have started taking antivert (for vertigo) and baclofen (for spasticity) again but I’m okay with that.¬† Those were early symptoms, particularly the vertigo, so I will likely always have that to deal with.¬† HSCT doesn’t promise to reverse symptoms, only to halt progression.¬† But I’ve been VERY lucky and most of my symptoms are significantly improved or completely reversed.¬† I do worry about my level of fatigue and cognitive issues- I forget a LOT.¬† “Cog fog” is a real thing and I’m afraid that being off of a DMD for awhile in preparation for transplant may have been problematic.¬† I was without a neurologist for a short time since I had to fire the old one who didn’t agree with transplant and was waiting to get in to see the new one.¬† He did put me on steroid infusions but I’m afraid it may not have been soon enough.¬† I liked to blame it on “chemo brain” but I’m not sure that I can still say that all this time later.¬† I’m hopeful it will improve.¬† Somehow.

I’ve been to a number of doctors lately.¬† I’ve been hanging out at Rush way too much. I am glad to have quality healthcare nearby….makes ubering much more affordable and is even cheaper than parking too. Within the past month I’ve seen 4 different doctors and I have appointments to meet 3 more.

In October, I went to my PCP because I had some strange rust like bleeding and I’m in menopause.¬† My doc did a pap smear (which turned out normal) and she could see it internally.¬† She sent me for pelvic and abdominal ultrasounds and said she’d give me a referral to a gynecologist to follow up depending on what my results showed.¬† My results showed that my uterine lining is too thick.¬† So I was referred to an oncologist who specializes in gynecology.¬† When I got off the elevator I saw the word “Cancer” everywhere and I’m thinking, “how could I have cancer when I had chemo?”¬† Well hopefully I don’t.

rush cancer center

The oncologist was going to take a sample from my uterus but she didn’t dilate me and said my uterus was “closed.”¬† Well, duh.¬† She tried to take a sample from outside but it came back as just tissue nothing could be read from it.¬† The oncologist said to stop taking the bio-identical hormone because maybe my body is trying to have a period and see if that’s all it is.¬† So I’m waiting.¬† Unfortunately I’m having hot flashes at night so I don’t think that’s it.¬† I have another pelvic ultrasound scheduled for the end of this month to see if the lining is still thick or has gone down and then another followup appointment after that with a regular gynecologist to talk about next steps.

Then a few weeks ago I saw my PCP again because my knee has been hurting to the point that at times I can’t bear weight on it or I’m limping.¬† I’m not sure what happened.¬† It’s been puffy a couple of months- I remember showing it to the nurse at work and not remembering what happened to it.¬† Being clumsy and forgetful isn’t a great combo.¬† I assumed I banged it on the desk or something.¬† So it got to a point where icing it and heating it really wasn’t doing anything so I saw my PCP and she gave me a gel to put on in for pain.¬† I had an x-ray done and it just says “joint effusion” which just means fluid.¬† So next step is with sports medicine doc a week from Monday. I’m using a cane again.¬† And a knee brace. Blah.

At the same time, my positional vertigo seemed to be back as I rolled over on my left side in bed and the room was spinning.¬† So I went back to my ENT but by the time I finally got in the BPPV had subsided it was just general vertigo.¬† But I still wanted to talk about the cracking and fullness in my ears that’s been going on since last year after transplant.¬† I had gone swimming, when it was allowed, but since July of last year I’ve had crackling in my ears and antihistamines have been very slow at working. It’s gradually improving but it’s still maddening at times.¬† A friend in my group has the same thing and I was hoping she found a solution but not yet.

rush ENT

The PA at the ENT confirmed BPPV somehow resolved itself but gave me orders to see an audiologist for hearing and balance testing and a referral for allergy testing.¬† Yesterday I went to the audiologist for a hearing test and a balance test.¬† I couldn’t take any antivert or antihistamines in preparation for three days.¬† So that was a challenge.¬† My hearing was normal which I expected.¬† I haven’t heard anything about the balance testing yet but don’t expect to for a bit.¬† I won’t get into the allergist until next month.

Work.¬† I seem to have confused a lot of people with my Linked In update.¬† Am I working?¬† Barely.¬† I’m consulting for someone for pharmacogenetic testing for senior citizens.¬† I obviously have a strong interest in precision medicine since transplant and I think it’s fascinating that your DNA can tell you and your doctor which medications work for you and your genes.¬† ¬†Like, I always knew Tylenol didn’t work for me but Aleve does and now I can prove it.¬† Since I’m consulting I can work as little or as much as I can tolerate.¬† It’s also good to have a placeholder in my resume.¬† I’m also taking one course at a time toward my MHA….5 more classes and a capstone and I’ll be done.¬† I wish I could do more….but right now I just can’t.

I have faith that in another year….hopefully less…..I’ll be great.¬† But for now I’m just going to do what I can and continue to focus on my health.

Sadly, one of the patients in the trial recently passed.¬† HSCT is a very serious process and Dr. Burt warned me, as all his patients, at every appointment before the transplant “you could die from this.”¬† And a few have and it’s very sad.¬† But other medical complications do happen and a weakened immune system makes us vulnerable during transplant.

This blog entry is dedicated to Carol.  May her memory be a blessing.

Thank you to my friends and family for their continued support.  It means everything.

Love,

Ellie

16 months post HSCT (+495 days)

oct 14 2017 pic

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.

shingles

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.

One year stem cell birthday!

 

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Today is my ONE YEAR stem cell birthday!!!

What a year it’s been!

A year ago today I was at Northwestern Room 1676 receiving my new stem cells back.

What a year it’s been!

I’d have to look back at my past year of blogs to even begin to list all of the changes. ¬†I’ve been able to discontinue most of my medication. ¬†I’m hoping I’ll soon be able to taper off of my last two symptom medications- baclofen, for spasticity, and antivert, for vertigo. ¬†I can already tell that both symptoms are improving but I’m not ready to go off the meds entirely. ¬†I may never be able to. ¬†Despite being in permanent remission, which is really the goal of this, my lesions are still on my brain and spine.

I also still have some crackling in my ears….almost a year ago I had a respiratory infection. ¬†I had some fluid in my ears and although it’s supposed to be gone….it’s been a crazy slow recovery. ¬†I started taking allegra again and it’s helping. ¬†But it’s still there. And it’s annoying. ¬†But it’s a small price to pay…that, and the menopause, the hypothyroid, all of it. ¬†I’d do it all over again.

The most significant improvement? ¬†I’m back to work….and all that goes with that. ¬†I’m driving again. ¬†I’m walking well. ¬†My bladder is fine. ¬†As I told one of my employees today “I don’t have the disabled Barbie accessories anymore!” ¬†No more walker, no more shower chair, no cane, no incontinence products….most pills are gone. ¬†Amazing.

I’m still tired. ¬†I’m working from home on Wednesdays. ¬†I was hoping that I would only have to do that in May but it’s going to continue through this month and maybe beyond. I started working part-time in April. ¬†I’m very very lucky to work for an owner who was willing to work with my recovery.

Today I was surprised with a card from one of my senior residents (a retired nurse) and cards and flowers from my management team.

I’m so grateful that I was able to return to my field of work…..I’m an Executive Director of an Assisted Living community in a nearby Chicago suburb.

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Members of our summer transplant group are getting together next week for a dinner while they are in town for their annual check-ups. ¬†I’m looking forward to seeing other HSCT vets from our group! ¬†My stemmie sister Daniela will be there too!

Last month I had dinner with Nadine when she was in town for her 4 year HSCT checkup!

ellie and nadine

If you haven’t seen her video…you must. ¬†It’s incredibly motivating. ¬†She was in a nursing home before HSCT and she is now walking and living her life.

Next I continue to improve and hope the rollercoaster allows me to continue recover peacefully.

Thank you everyone for your support the past year. ¬†It’s meant the world.

Ellie

Please share this information with anyone suffering from autoimmune diseases including Multiple Sclerosis, Scleroderma, Devic’s, Stiff Person Syndrome….and probably more that I’m not remembering right now. ¬†HSCT is only available in clinical trials in the US. ¬†However clinics in other countries may be able to help for a significant cost.

Here are the links for Dr. Burt’s clinical trials:

Multiple Sclerosis link:

https://www.clinicaltrials.gov/ct2/show/NCT00273364?term=multiple+sclerosis+stem+cell&state1=NA%3AUS%3AIL&rank=1

Scleroderma trial link:

https://www.clinicaltrials.gov/ct2/show/NCT01445821?term=stem+cell+chicago&recr=Open&state1=NA%3AUS%3AIL&rank=23

Stiff Person’s Syndrome trial link:

https://www.clinicaltrials.gov/ct2/show/NCT02282514?term=stem+cell&state1=NA%3AUS%3AIL&rank=1

Devic’s Trial Link:

https://www.clinicaltrials.gov/ct2/show/NCT00787722?term=stem+cell+chicago&recr=Open&state1=NA%3AUS%3AIL&rank=21

 

 

 

10 month update (+309 days post HSCT)

 

hsct10mo

I’m happy to¬†report I’m back to work! ¬†I’ve been an administrator/executive director of assisted living facilities for the elderly for the majority of my career. ¬†I didn’t think I would be able to do this type of work again. ¬†But I am very fortunate to be working for an owner who allowed me to start part-time for the month of April. ¬†I’ll start full time in May and I have permission to work from home one day a week if I need to still transition into full time.

My current health status is improving. ¬†The vertigo has cleared up and I’m back to baseline. ¬†I’m always a little dizzy and take antivert twice a day. ¬†And I’m really tired. ¬†I haven’t been to the gym and I’ve gained more weight. ¬†The integrative medicine doc tested my adrenal glands and I got the results back last night. ¬†I have adrenal fatigue and he said to order adren-plus and to take 2 a day. ¬†Hopefully that helps.

I returned to Northwestern yesterday and today for my one year visit! ¬†I’m early actually since transplant was 6/6/16 but my COBRA insurance ends this month and I’m not sure what my new insurance will cover. ¬†The MRIs of my brain and C-spine both show REMISSION! I already suspected this but it’s always a relief to hear!

mri10mo

My blood work also came back totally in-range! ¬†I did the walk, the peg test, the cognitive math test, and I felt better doing all of them than I had during either of the previous testings. ¬†I also hopped on one foot again which I couldn’t do before HSCT for some reason. ¬†The study neurologist suggested I try green tea capsules to improve my energy level so I may try that. ¬†Both he and Dr. Burt were happy with my progress- I am too!

Our HSCT summer 2016 group has become known as the “summer minions.” ¬†Our facebook group leader had a great idea to make bracelets! ¬†We are like a little family and I’m so grateful to have these men and women on my team!

 

Sadly, we recently lost a member of our group.  He did not pass from HSCT but rather from a separate medical procedure.  We are all devastated and wish his family strength.

This blog entry is dedicated to David.

 

9 months (almost) post HSCT update (day +264)

Happy to report I FINALLY feel pretty good!

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It’s been a long road and a crazy roller coaster ride.

When I last updated 2 months ago I talked about being diagnosed with hypothyroid- the nature-throid TOTALLY cleared up my hip and joint pain!

I’ve also been going great with the bio-identical hormone, I take it BID (twice a day) with the acyclovir that I’m still on. ¬†No menopause issues here anymore.

I had some really bad vertigo occur early this month….I rolled over in bed and it felt like tidal wave was knocking me over. ¬†I tried to sleep it off and couldn’t so I fumbled my way into the kitchen to grab to anti-vert to try to stop it. ¬†When I went into the bathroom I had to grab the towel bar to keep myself from falling because it felt like my condo was tilting as if on a ship. ¬†I went to an ENT and he diagnosed it at BPPV- Benign paroxysmal positional vertigo. ¬†This was a relief because I was afraid I was having a relapse! ¬†The treatment was very simple it’s called the Epley Maneuver which involves tapping on the bone behind your ear by P/T professional while in different positions. ¬†His nurse actually did it and it only took one treatment and it was cleared up. ¬†I’ll still go back to see the ENT doc in a few weeks for a follow up. ¬†I had to go back on diazepam in addition to the antivert and was taking max doses of both…..but am now off diazepam and taking half max dose now which is 25mg of antivert BID.

Then there was the dental issue. ¬†After HSCT I lost a filling and I thought “no big deal I’ll get it replaced at my next visit…” well, it was a big deal. ¬†Apparently the tooth got infected and decay/infection spread to the next tooth and I had to get on antibiotics immediately and then a week or so later TWO root canals! ¬†So let that be a lesson to those of you going thru HSCT- take care of your teeth and if you lose a filling get it fixed. ¬†Immediately.

I also decided to send a few strands of hair in for an allergy test. ¬†I figure I want to get everything solved at once. ¬†The test was from¬† from¬†https://allergytest.co/ (notice it’s not .com, it’s .co.). ¬†They tested against 600 food items and provided a report for those I have sensitivities to. ¬†They also tested against non-food items (I forget how many, like 300).

The most interesting information though, was what was lacking in my system.  They provide a nutritional deficiency report testing my hair sample to 80 nutrients.  I was deficient in 4:

Ascorbic Acid (Vitamin C!!!)
Assists: Atherosclerosis, Cancer, High blood pressure, High cholesterol, Infections
Supports: Adrenal gland, Circulatory system, Gums, Immune system
Sources: Asparagus, Avocado, Broccoli, Cantaloupe melon, Citrus fruit, Grapefruit, Kale, Lemon, Mango, Mustard
greens, Onion, Orange, Papaya, Persimmon, Pineapple, Radish, Spinach, Strawberries, Swiss chard,
Tomato, Watercress

Omega 6 fatty acids
Assists: Acne, Allergies, Breast cancer, Diabetes, Eczema, Heart disease, High blood pressure, Obesity,
Osteoporosis, PMS, Psoriasis, Rheumatoid arthritis
Supports: Heart disorders, Skeletal system
Sources: Blackcurrants, Brazil nuts, Corn, Flax seeds, Safflower oil, Sesame seeds, Sunflower oil, Sunflower seeds,
Tahini

Pantothenic Acid (B5)
Assists: Anxiety, Depression, Osteoarthritis, Rheumatoid arthritis, Stress
Supports: Adrenal gland, Gastrointestinal tract, Immune system
Sources: Beans, Beef, Blackstrap molasses, Buckwheat, Button mushroom, Cantaloupe, Chicken, Dates, Eggs, Goats
milk, Honeydew melon, Jerusalem Artichoke, Orange, Parsnip, Peanuts, Pork, Potato, Raspberries, Sea
vegetables, Strawberries, Sweet potato, Tomato, Turnips, Watermelon, Winter squash, Yogurt

Phenylalanine (Amino Acid- this made a HUGE DIFFERENCE!!)
Assists: Depression, Parkinson’s, Vitiligo
Supports: Brain
Sources: Beef, Eggs, Fish, Milk, Pork, Poultry, Tofu, Yogurt

Proanthocyanidins
Assists: Atherosclerosis, Heart disease, Free radicals, Inflammation
Supports: Circulatory system
Sources: Blueberries, Blackberries, Cherries, Grapes

I’ve been adding one supplement a week. ¬†I haven’t yet added the B5 or Proanthocyanidins yet. ¬†But the Phenylalanine is amazing….I have more energy, no food cravings an little appetite. ¬†It’s helped me focus and get things done. ¬† ¬†I’m so glad I took this test to figure out what was lacking in my system because it truly makes a huge difference in how my body functions by adding the supplements.

I’m back at the gym a few times a week and walking my dog more. ¬†The weather was beautiful for a couple of days in Chicago it actually reached 70 a couple days ago- in FEBRUARY. ¬†I took my dog on a long walk around the neighborhood. ¬†This is my dog Zoe and you can see the Chicago skyline in the background:

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For those of you who are fans of Chicago Fire and Chicago PD we passed those sites on our walk too. ¬†They are very close together and I realized there is a closed off street separating the two buildings which makes me wonder why they don’t keep the film crew trucks there instead of blocking the street….oh well. ¬†It’s like living on a film set in my neighborhood sometimes.

This is the station where they film Chicago PD (just the outside I don’t think they film inside)

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And this is the Fire Station where they film Chicago Fire (and also my polling place):

blog022317chicagofire

So….next steps for me in March are to follow up with the ENT doc, follow up with my neurologist for a RETURN TO WORK letter! ¬†Yes, I plan on returning to work soon! And I follow up with my integrative medicine doc to see how my thyroid is doing. ¬†He had me come in for labs once since our initial visit and increased my dose of nature-throid as my thyroid was still hypo (slow).

In April I’ll be going to see Dr. Burt for my one year visit so I’ll be posting about that in April. ¬†My one year birthday is actually 6/6/16 but my insurance coverage under COBRA ends at the end of April so I’m going in early.

For those of you considering HSCT- read as much as you can about it, and if your medication has failed you try it if you can. ¬†It’s only available in the US in Clinical Trial but you can seek treatment in other countries. ¬†It’s 100% worth getting your life back.

I realize the MS Walk is coming up to raise money for the MS Society. ¬†I am not supporting the MS Society as long as they do not recognize HSCT. ¬†They make it sound very scary and life threatening when in reality nobody in Dr. Burt’s study with MS has died and nearly everyone is in remission and most of us have had a reversal of symptoms and we are all off some or all of our medications! ¬†There is something very strange happening with the National MS Society in the US and Dr. Burt’s trial. ¬†They talk about the others but don’t highlight the amazing success we have RIGHT HERE. ¬†They also do not assist those who are unable to obtain HSCT, who were accepted for the study, with insurance denial fights. ¬†They have promised me that they are putting something together but it sounds like it’s a “do it yourself” type thing which is not the advocacy I’m looking for. ¬†So, while the MS Society does do some good things, they do not recognize that the closest thing to a cure, many call it a cure, as it stops the disease in it’s tracks and reverses symptoms for many…..which are the first two criteria they claim to fund research. ¬†The United States MS Society has NOT funded a clinical trial for HSCT. ¬†Canada has. ¬†American greed and the United States MS Society is no exception.

So….for those of you who walk, thank you, but honestly, it’s not helping as much as you think it is.

A few of us are working on that fight now- stay tuned and I’ll be asking everyone to help with some advocacy on behalf of HSCT patients and those who wish to have HSCT.

Thank you everyone for your support and I’m looking forward to posting my next post in April after my next MRI showing again I’m in remission!

Ellie

 

6+ months post HSCT (Day +199)

elliehaircut2

I finally decided to get my hair colored!  Feels good to recognize myself again!

Since last month’s update a few things have changed….I became more tired and spent 12 hours a day in bed. ¬†I also had more periods of vertigo and not being able to drive….so I haven’t been as active as I should be. ¬†I also spent half of the month away from home while I stayed with my best girlfriend so now that I’m home I’ll make an effort to get back to the gym now. ¬†I have still been having awful joint pain, and my finger and toenails breaking and splitting. ¬†My hands and feet cold at times which actually is handy at night when the rest of me is hot….but my hot flashes have stopped! ¬†I’m hoping they don’t return for awhile. ¬†The other women in my summer HSCT group have also reported that theirs have stopped too.

I still have clicking in my ears from the eustachian tube issue and it’s annoying but it’s very very slowly improving. ¬†I’m just going to hope it continues to slowly improve. ¬†I believe it’s due to the cold I had that lasted several months. ¬†It’s strange dealing with “normal people” colds….when I had (active) MS I rarely caught anything since my body was so busy attacking itself. ¬†I had never had a sinus infection in my life so that was all new to me. ¬†My memory is still a problem which is kind of frustrating but at least I entertain myself finding stuff in weird places, etc. ¬†Gotta laugh.

I went to Northwestern last month for my 6 month checkup.  This involved an MRI of my cervical spine and my brain (on the same exact machine each time!), blood draw, and visits with the consulting neurologist Dr. Balabanov and with Dr. Burt the study physician.

I had never met Dr. Balabanov before as I wasn’t required to see him prior to transplant so I wasn’t expecting to see him this time….but I was told he had an opening that they wanted to fill. ¬†He estimated my EDSS score is now 2.5 which is down 2 points from before transplant! ¬†He said this is typical. ¬†Amazing…the goal of HSCT is to STOP the progression of the disease….improvement of disability is a bonus. ¬†I was able to walk in a straight line for the first time in years, and I can hop on one foot! ¬†I don’t know why, but some of us MS folks are unable to do this…probably related to balance, etc. ¬†But I can suddenly do it now.

Next I went to see Dr. Burt last month for my 6 month check up. ¬†He showed me my MRI results which indicate NO NEW LESIONS!!!! ¬†This indicates remission. ¬†I’m very grateful.

My blood work showed thyroid issues so I followed up with an integrative medicine doc who I saw yesterday and was diagnosed as hypothyroid. ¬†I’m not surprised, I’m actually relieved to finally have this diagnosis as my thyroid has been weird for years but was never “bad enough” to be treated. ¬†It was always a “we’ll watch it….” and now finally more than watching. ¬†Treating. ¬†He prescribed Nature-throid and also set me up with a compounding pharmacy for a bioidentical hormone to address the menopause. ¬†I’ll go back to get more labs in a month and we’ll work to get my levels to where they need to be.

This is a difficult “roller coaster” of recovery but I am slowly improving. ¬†I am having difficulty focusing so I decided to this semester off of school as well. ¬†I’m hoping to work again in a few months and will resume my studies when I’m able. ¬†For now, I’m focused on my health and recovery.

Thank you to friends and family for your support!

5 months post-HSCT (Day 151)

 

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First post-HSCT haircut today! ¬†My hair has been growing in crazy directions I had no idea how many cowlicks my hair had! ¬†I will have to get used to getting regular haircuts. ¬†I think I was like 30% gray before HSCT and now I’m like 70% gray but that’s okay with me- at least for now.

I went to my neurologist on 11/1. ¬†He was impressed with my improved leg strength and balance. ¬†I could walk the straight line with my arms flailing but i didn’t stumble or hold on to anything which is a major accomplishment. ¬†He also noticed my hands are still a bit weak but much stronger.

He was also glad I was able to D/C so many meds. ¬†The only symptom meds I’m on now are baclofen and antivert for spasticity and vertigo respectively. ¬†I decided to d/c ritalin even though I’m still tired because the estroven I’ve been taking has something in it for energy and I was feeling weird. ¬†I also D/C vitamin B12 because I was getting this strange disappearing rash and I was listening to the tv show The Doctors and they were talking about how too much B12 can cause a rash or other issues so I thought I’d stop it and see what happened and sure enough it stopped. ¬†I’m still taking vitamin D.

My 6 month follow up appointment with Northwestern is the 3rd week of this month. ¬†I’ll get another MRI done and meet with Dr. Burt and hopefully hear no new lesions! ¬†I’m feeling better everyday so I’m expecting to hear remission. ¬†I heard from others on the facebook page that they’re no longer giving out EDSS scores (expanded disablity scale score). ¬†So I looked up the scales on my own to try to score myself just to see my progress. ¬†Pre-HSCT I was 4.5. ¬†I beleive I am now at 2.5 which is pretty remarkable improvement.

For those of you looking for the forms here’s what I found:

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/10-2-3-29-EDSS_Form.pdf

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/10-2-3-30-Functional_Systems_Kurtzke_Form.pdf

I’ve started to gain more energy and started going back to the gym! ¬†It feels really good to strengthen my muscles. ¬†I’m doing some cardio too but I get tired and dizzy so I’m only doing 30 min cardio and 15-20 min strength training.

weights

As for how I’m feeling now….I’m still very tired. ¬†I beleive that the meds I was taking for the everlasting respiratory infection were making me tired so I stopped those as it’s almost cleared up. ¬†I have cracking in my ears from clogged eustachian tubes but it’s slowly improving so I’m going to give it more time. ¬†I also have this weird texture sensitivity to fabrics, especially at night, so I’m constantly applying lotion to my hands/feet and arms/legs. ¬†My neuro doesn’t know what that’s about. ¬†It’s not as frequent as it was but it’s uncomfortable and just weird. ¬†My joints are still cracking and hurting….this week I couldn’t straighten my arms as my elbows were painful. ¬†They are much better now but still hurt. I try to keep moving as much as I can but it’s very hard when you’re stiff and hurting and exhausted. ¬†So I pace myself. ¬†I’m slowly better everyday so I’m grateful for that. ¬† My memory needs improvement and I’m hoping that will improve.

I’m still having menopause symptoms…..I’ve started taking estroven that I bought at costco and it’s helped a lot. ¬†I’m having less than half the hot flashes that I was. ¬†I’ll be going to see a functional medicine doc next month for a bioidentical hormone and thyroid help. ¬†For now I’m mostly uncomfortable at night but I bought this cooling pillow at costco and it does help. ¬†The instructions say to air it out a few days before using it and I agree…..it’s also a little hard at first but it softens with time. ¬†At first I was still getting hot and would turn it over to the other side which is also cool.

cooling-pillow

So….I’m still on the “roller coaster” which I will be for awhile, but I wish I was functioning better and faster as I’m anxious to return to work.

Lastly….it’s been fun to see others in the Chicago HSCT pages celebrate the Cubs Victory as they now consider Chicago their 2nd home. ¬†I’ve never been a sports fan but as a Chicagoan I’m proud of them….and I’ll always remember 2016 was the year the Cubs won the world series because it was also the year I won with HSCT.

Tuesday is election day…..please vote for candidates that support regnerative medicine and affordable access to healthcare.

Thanks everyone for your support!

El

Month 4 post HSCT Day +123

ellie-oct-7-pic

I have lots of gray hair! I’m 4 months out from transplant. ¬†I’ve been resting at home and wrapping up a couple of courses toward my master’s degree.

I decided to drop my next course because I’m very tired and have trouble concentrating. ¬†I actually had to get a 6-week extension on one of my courses because it’s been a challenge for me.

My cold has improved quite a bit but I still have sinus issues….I can hear crackling in my ears which seems to be a eustachian tube issue. ¬†It’s getting better everyday so I think this last medication, allegra, seems to be doing the trick. ¬†This is my fourth round of meds to clear this up. I’m thinking it will be gone by next month…let’s hope so!

Since my last update I’ve had some bloodwork done by my primary care physician (PCP) because I’ve been having a lot of bone pain. ¬†It was bilateral in my shoulders, hips, knees and ankles. ¬†It was hard getting in and out of the car and transferring in general from sit to stand and stand to sit. ¬†Walking was also more difficult as a result. ¬†My doc gave me a referral to a rheumatologist who I will be seeing in a couple weeks. ¬†If she tells me I have fibromyalgia again I will scream! ¬†20 years ago I was told that’s what I had and it turned out to be MS. ¬†Maybe real cases of fibromyalgia exist, I don’t know, but it seems to be that’s a label for “complaining woman disease” when they cant figure out what’s actually wrong with you. ¬†She sent me for blood tests to check my levels for arthritis, thyroid and estrogen/menopause but said to wait until the cold cleared up as that can affect blood tests. ¬†I think it was like 8 weeks of the cold at that point.

In the last week my shoulders and ankles have improved a lot. ¬†My ankles feel like I need to pop them, as they seem very stiff, and at night I find myself doing that in bed. ¬†I somehow popped my right knee so that feels much better but I can’t figure out how to do it again to my left knee! ¬†My shoulders are much better. ¬†When it first started I could barely raise my arms.

I figured I should just get the bloodwork done since my cold is improving so I went on Monday and got my results back a couple days ago. I’m waiting to discuss it with her but in reviewing the tests in mychart it does appear that I am in menopause as a result of chemo. ¬†I was prepared for that as I was warned it was likely to happen at my age as I was 41 at the time. ¬†The blood test also showed that I have some inflammation which I will discuss with the rheumatologist that I was referred to in a couple of weeks. ¬†She didn’t rerun my T4 which was below range but she did do another TSH which improved a little so I don’t know if she will address the thyroid or not. ¬†I’ve been borderline or subclinical on and off for 20 years and it’s never quite bad enough for someone to fix it. ¬†We’ll see what happens.

Everyone in the HSCT community talks about “the rollercoaster.” ¬†This is definitely a rollercoaster. ¬†I liked to think that I was going to be returning to work by now. ¬†That’s not happening. ¬†If I was working I would be calling in sick everyday. ¬†It’s hard for me to get going until almost noon lately. ¬†I’m extremely tired and spend like 12 hours in bed. ¬†I did start taking estroven for menopause symptoms like hot flashes and it’s only been a couple weeks but I can already tell it’s helping as the hot flashes have cut in half. ¬†It’s supposed to help with energy so I’m hoping that starts to improve but I’ll see what my doc recommends.

I see my HSCT friends on the summer board talking about how they’re doing….some are having similar symptoms to me that were in my transplant group, others after me and in the euphoric state of being grateful for the experience and noticing improvements and the great hope that comes with that. ¬†I’m still very grateful and noticing improvements but I also notice the rollercoaster and its unexpected twists and turns. ¬†I’ve accepted that I’m not a superhero and I’m not going to be able to push my recovery to happen faster than it wants to. ¬†So I’m resting and not fighting it.

rollercoaster-hsct

It’s amazing how many people are pursuing HSCT and all of the facebook pages that have popped up and the countries that are accepting US citizens to have it performed there when they are denied here for clinical trial. ¬†It’s also amazing to me how many people are following us. ¬†This blog has been seen by thousands of people in 50 countries! ¬†Some of these countries I have never heard of.

My hope is that HSCT will become more accessible to those who are seeking it from our own country. ¬†The 21st Century Cures Act is an example of some legislature that would make regenerative medicine available faster. ¬†The FDA takes a very long time to approve lifesaving and quality of life procedures. ¬†There are amazing things happening with medicine and regenerative medicine….the blind are having stem cells planted in their eyes to see! ¬†The amount of lives that can be changed is astonishing. ¬†I really hate that others have to wait while they decline. ¬†I’ve been advocating with a friend for the REGROW Act which also strives to make regenerative medicine available sooner but the proposed act has some challenges.

Please use your vote in the upcoming election wisely. ¬†I can’t think of many issues more important than healthcare.

Thanks to everyone for the support!

Ellie

3 months post HSCT Day +92

Today is the 3 month anniversary of my 6/6/16 transplant for MS!

I’m feeling better everyday. ¬†My MS symptoms have improved dramatically. ¬†I’m mostly just very tired, a little dizzy, still some spasticity and get a random “zap” in my toe here and there. ¬†But I’m functioning so much better and it scares me to think of where I would be if I hadn’t gotten HSCT. ¬†It’s hard to get rid of colds though! ¬†I’ve been sick almost the entire time I’ve been home. ¬†One cold lasted a month and this one is at 5 weeks or so. ¬†I’m waiting to hear back from my primarcy care doc to see if it’s time for a new antibiotic. ¬†But I’ll take it over the MS symptoms I was having anyday. ¬†I like walking and being able to hold my bladder!¬† And my shower chair is now outside my shower holding my towel.

I’ve been spending my time doing homework toward my MHA degreeand resting. Somehow I’ve managed to maintain a 4.0 GPA through all this and I’m hoping I can continue!

My hair has started to grow back more and it’s crazy how much gray I have! ¬†My eyebrows are almost normal now and my eyelashes are about half their normal length.

3-months-ellie-outside

I went for my last blood test today….well, last one in the 16 week series…. at Northwestern and thought about how much has changed. ¬†For one thing I DROVE to the hospital which is the first time I’ve driven there! ¬†My friend Denise drove me to my evaluation in November and I had been getting rides or taking uber for everything since then. ¬†In fact, one of my best friend’s, Kim, drove me to walgreens a couple weeks ago and said “do you realize the last time we came here we were buying you a 4-prong cane?” ¬†And we laughed that she wanted me to talk her dad’s walker and I was refusing….until I absolutely needed it.

My dog, Zoe, came home after staying with Kim and her daughter for a few months. ¬†I’m glad to have her back with me and she hasn’t left my side. ¬†She’s sitting in the new bed Kim & Kailey bought for her. ¬†She misses them and gets confused when they leave after they visit!¬† Kim took the walker back when she left and I’m so grateful that I was able to use it for the time that I did it really helped me even though I resented it.¬† Kim is probably one of only a couple people who can talk me into doing things.¬† Love her.

zoe-is-home

I also turned 42 last month! ¬†As someone pointed out to me I had two birthdays this year! My family took me out to dinner in Little Italy. ¬†Here’s a pic of me and my son-

ellie-birthday-pic-with-drew

Next step is my 6 month evaluation….which I was told is optional and I could wait until one year but since I’ve already met my deductible for this year I want to see that MRI with no new lesions!

It’s been a crazy year and I’m so grateful to be on the other side of HSCT and looking forward to continuing to get my life back!

If you know anyone with an autoimmune disease send them to Northwestern or look at clinicaltrials.gov.  People are suffering and deserve to have their lives back too.

Thank you everyone for the love and support!

Ellie

 

Month 2 post HSCT (Day +63)

I can’t believe how fast the time has gone.

The good news is my MS symptoms just keep improving….the left side of my face and inside mouth was numb from a lesion on the transgeminal nerve and that has mostly cleared up…..a tiny part of my lip and tongue are still a little numb. My labs continue to improve and are in the normal and low-normal range and I had them drawn again today so I’ll be interested to see how they are. ¬†I’m still forgetful and a little dizzy but I’m hoping that improves when my cold clears up. ¬†I’m also having trouble concentrating and focusing and I’m taking 2 classes online toward my master’s degree so I kind of pick it up and put it down all day long while doing other things or resting.

My struggle in July and August has been catching colds and not being able to overcome them with my immune system of a newborn. ¬†So I’ve been uncomfortable with sore throat, coughing, congestion, no voice, now hoarse voice, fatigue, all of it. ¬†I did a zpack last week and it did help some but the cold is still here and uncomfortable. ¬†I think I should have waited longer to go swimming after my “first cold” occurred….I think I got water in my ear and it’s done something to get the cold going again. ¬†I’ll ask my transplant nurse this week what to do.

In the grand scheme of things….I’d much rather deal with rebuilding my immune system with a few colds than have an overactive immune system.

I received the medical alert bracelet I ordered today at the suggestion of my stem cell sister Daniela from http://www.stickyj.com. ¬†They have a lot of styles that don’t look too obvious.

medical alert bracelet

My eyelashes and eyebrows are starting to grow back and the hair on my head and body has too but not much on my legs yet which is fine with me! ¬†I ordered false eyelashes and an eyebrow kit with stencils after seeing pics of my stemmie sister Daniela and the others in the group. ¬†I’m not very good at it at all and I’ll need some practice but I had some fun playing with them tonite and added a wig I found at a local shop. ¬†So here are my pics without hair and with hair:

ellie no hairellie brown wig and eyelashes

I’ve been too tired to hang out much on the HSCT facebook pages lately but I hope to catch up soon and see how everyone else is doing!

Thanks everyone for your support!

Ellie