This Is MS Multiple Sclerosis Knowledge & Support Community

You could find quite a bit of AHSCT information on the facebook pages below. The first is an "open" group comprised primarily of pwMS who had both protocols (non myeloablative and myeloablative) worldwide. The other is a closed group comprised of those who had or will have the non myeloablative procedue with Dr. Burt spanning various autoimmune diseases such as MS, CIDP, Lupus, Crohn's, etc.

Al


https://www.facebook.com/groups/316388125075284/
https://www.facebook.com/groups/3163881 ... 252154010/

^yes!

shucks - you should look into the FB page if you haven't already. there is a lot of good info on Dr Burt and insurance options from people who have gone thru the process.

Asher, I saw you had posted an update a few days ago and to be honest I was a bit nervous to read it. I know you were struggling with your recovery and it's GREAT to see the reported progress! Those results are very impressive and I'm sure they will continue. Keep up the good work.

I was supposed to start treatment with Dr. Burt tomororw but the final baseline testing came back with a low B and T cell count from the Fingolimod I was taking so I need to wait another month. I can't wait to be on your and Georges side of HSCT!

Best,
Kevin

Good luck Kevin! I will lurk the hsct fb page, but. The nature of my job requires that I keep my health stuff close to the vest. Here at least, it is semi anonymous. I have talked to many of you through pm and email, but public forum might cause me some issues. Thanks for all of the advice, and I wil lurk it up.

Thank you Kevin. So glad you are going to get treated! Good news is that your recovery will be speedier as your HSTC is milder, whilst not being less effective, at least so it seems. Wish you good luck, although you will not needed, your in very competent hands. Let us hear how you're doing once you 'get back on your feet' Asher

I just got the news that my insurance pre approved all of the "pre HSCT testing" while not promising anything about the procedure. Even better, NW is allowing me to get most of the list of tests done at home, over 1k miles from chicago, and send the results to them. COuld this be a sign that they will later approve the treatment?

JSH

Three months of silence. I waited to see whether it’s ‘real’ or whether it’s a placebo that is playing tricks on my mind. So let’s take stock of the what’s so: Tomorrow I celebrate 12 months post transplantation, and celebrate it is. I will start from the bottom-line and work my way up:

• I have lived with MS for 14 year so take my word for it; I know what it feels like to have MS and I can tell when the disease is progressing – it sure doesn’t feel that way now! Call it ‘cure’ if you wish, and if you don’t, don’t, but; apart for the accumulated MS disability (attributed to 14 years of MS), I feel like a normal individual who is recovering from chemotherapy.

• Last week my Neurologist and I reviewed the results of my head and spinal cord MRI. Spinal cord is 100% clean, no sign of any disease activity! The brain MRI only reveals an old ‘black hole’ and 2 other old lesions. All the pre HSCT signs of active disease are all but gone.

• On June 11 my vaccination program kicks off to ‘teach my naïve immune system how to defend me against polio and the likes.

12 months post HSCT I can now say that, for the most part, the residual effects of the high dose chemo have faded and that I’m nearly back to the pre HSCT baseline + some improvements. In fact, the improvements I reported in my 9-month report have all persisted. Recall:

• “From a Mental and Cognitive point of view both my Stamina and Agility are unmistakably and unquestionably right back to where they were 10 years ago; an overall sense of well-being and transparency that I haven’t experienced in years. Hardly any mood swings anymore, short-term memory entirely restored and my cognitive acuity & speed are fully back on track. Surprisingly for me, my mental and cognitive capacities no longer diminish coincident with physical fatigue. ONE NEWS UPDATE: LAST WEEK I WAS OFFERED THE OPPORTUNITY TO JOIN A REPUTABLE CONSULTANCY FIRM. I HAVE ACCEPTED THE OFFER EFFECTIVE JUNE 15.

• From a Physical point of view I am still somewhat weak (ALTHOUGH LESS SO AS THE RESIDUAL CHEMO EFFECTS DIMINISH). Never-the-less, there are a few good things going on that are worth reporting:

- Heat intolerance (or tolerance if you like) is entirely 100% resolved
- Vertigo 90% resolved (NOW 100%)
- Bowel movement issues entirely resolved
- Urgency 70% resolved (UP TO ABOUT 80%)
- Optic-neuritis 80% resolved
- Spasms in right leg 90% resolved (NOW 100%)
- Purple foot 80% resolved (NOW NEARLY 100%)
- I sleep well and wake up fresher as compared to pre-HSCT
- 16 hour days with no need for a nap
- Walking range back to pre HSCT (700 meters) (NOW UP TO 1 KILOMETER) without walking aids.
- Speech and swallowing entirely restored
- I can write a whole sentence again and I find it easier to button my shirt
- Finally, I regularly (NOW DAILY) sport on my home trainer and I am (STILL) making impressive progress.”

Finally, some post HSCT reflections:

For people with more advanced MS and accumulated neural damage, HSCT is by no means a quick fix. Neural and motor functions will, at best, slowly and only partially recover. At worst, over time you will only notice that disease and disability progression have been halted. So bottom line, the key words are SLOW, PARTIAL and STOPPING PROGRESSION. Any thing beyond this should not be expected and should be regarded as a bonus; else you setting yourself up for a serious disillusion. Btw, I have been told that such a 'bonus' is not likely to be granted in the first year post HSCT.

Also, do not underestimate the residual effects of chemo. It is not nearly as dangerous as many may believe, but it is by no means a benign procedure and it will certainly put your patients and resilience to the test.

Am I happy I did this? Much more; I am grateful, for every breath I take, for every day I live! For as long as it lasts, MS no longer terrorizes me, and it no longer progressively robs me of my dignity.

Happy to take any questions. Yours, Asher

Way to go Asher. Please keep us posted. I am very grateful for the insight.

Asher,

What great news to hear from you! I'm thrilled to read your positive update regarding your physical and cognitive recovery AND your new consulting opportunity. Best of luck with your position and I wish you continued success.

I have completed HSCT through Dr. Burt in Chicago and returned home to NY last week. After a few strong days, the last several have flared MS symptoms from before and some new ones. Even though my protocol was nonmyeloablative I feel very weak and frustrated. I know it's too early to make determinations and I'm doing my best to be patient.

All the best my friend,

Kevin

Hi Kevin, sounds all to familiar. What you are experiencing is indeed a flareup of SYMPTOMS, and most likely not the underlying and now eradicated MS. Man, post chemo is a bitch. Please, please don't be discouraged, in 3 months you will be over the worst and the sun will most likely start shining for you too. Sending you best wishes and encouragement from across the ocean. Asher

Kevin, congrats, and please keep us up on your recovery.

Great to hear about your progress Asher! I'm curious to know what your EDSS score was prior to treatment and if you had any decrease yet? Thanks.

nice Asher! it's been a long road and still more to go, but it must be so nice to have the bulk of it behind you. all the best!

sean

Asher,

That is awesome news; I am very happy for you and your family. You have come a long way and the 2nd year should hopefully reveal even better improvements. That said let's not lose sight of the fact that you have already achieved goal #1....stop the progression of the MonSter which you obviously have achieved.

My 6-month post HSCT MRI in 2/12 revealed no new or active MS lesions (finally); so far so good.

I wish you all the very best!

Al

Thanks guys!

Not 100% sure yet, but it looks like EDSS is down from 4.5 to 4.0.

Al, your MRI is really cool news, certainly given al the upheaval you had to go through to get the treatment. Congrats!!!