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CLL and MS

I'm Kelly, and I'm a survivor of Chronic Lymphocytic Leukemia

Hi my name is Kelly, I was diagnosed with Multiple Sclerosis 30 years ago and still mobile some times I use a cane during exacerbation. During thanksgiving 2013 I was diagnosed with Cll And I am on the watch and wait treatment?Feeling so fatigued and have a red rash on my neck and chest that itches, can only eat small amounts at a time and have developed chronic pancreintitis, At this time I am not on any treatment and was wondering if anyone else has this combination of MS and Cll? needing to hear about your experience ! No clue what to treat first? Thank so much !

  • Post #1
  • Sat Apr 26, 2014
Hi, I'm David H.

Hi Kelly, I was surprised to see your post about having MS and CLL! Yes, I also have both! Kind of surprising when I found out I had both of course – I developed MS first (was diagnosed in ’06) and then CLL which I have had 1-2 years. You are the first person I know of that has both as well, and I have talked to many doctors in many disciplines. I am taking Tecfidera for the MS, after taking interferons for a long time. My white blood count is still climbing with my CLL, but no direct treatment just yet. Would really appreciate hearing more from you!

  • Post #2
  • Thu May 1, 2014
I'm Kelly, and I'm a survivor of Chronic Lymphocytic Leukemia

So glad you responded ! How are you doing on Tecfedera so far (side effect)I have taken Tysabri infusions but developed the JC Virus antibody so then I tried Rebif and Copaxone.Some daysI feel normal and I Love and live those days to the fullest but the bad days really can be miserable as you know. What kind of MS do you have? It is so scarry to think about the fight in front of me what about you? So nice to know I’m not alone . :) Kelly

  • Post #3
  • Fri May 2, 2014
Hi, I'm David H.

Hi Kelley – just saw your response! Thanks so much for responding again. Please feel free to send me a private message too. Sorry for the delay – I guess I don’t have their system down very well. My CLL is picking up speed so I’m sure they will have to intervene soon. The MS hasn’t changed too much for the worse since I have been taking Tecfidera. I do have hand tremors and some other consistent problems though. Have your doctors talked about when they might begin intervening with the CLL? I agree with living with the good days to the fullest!! They are like a breath of fresh air :) How are things going since you posted?

  • Post #4
  • Sat Jun 7, 2014
Hi, I'm David H.

How can we exchange emails on this system so we can keep up regularly?

  • Post #5
  • Sat Jun 7, 2014
I'm Kelly, and I'm a survivor of Chronic Lymphocytic Leukemia

Send me an email it would be great to share :)
mrsweberworks@hotmail.com hope to hear from you soon.

  • Post #6
  • Mon Jun 9, 2014
Hi, I'm Kelly C

Hi Ladies, I appreciate that you’re now communicating via email but I really hope this notifies you or that you’ll check back in to see this note. I too have RR Multiple Sclerosis, diagnosed in July of 2002. Why am I writing you? Because just two years ago, well into my MS treatment I was diagnosed not with CLL but a form of AML called Acute Promyelocytic Leukemia (APL or APML). I have recieved two years of treatment and I’m in remission-it seems to be a very bright future ahead but lord has it been a very difficult road. There are other things including contracting Pertussis while taking Tysabri that I feel may have added to my circumstances but its too long to share here. I would love to hear how you both are doing and the individual treatments you’ve gone through and challenges leading up to diagnosis and/or remission. Please feel free to send me a note at Kelly.cormier@intermedix.com. We all know that Knowledge is Power as the phrase goes and I have been blessed with an incredible health care team that has helped me put a great deal of this together and came up with a unique and very effective care plan. Really hope to hear from you or anyone else in our unique position!! Best wishes- Kelly from CT

  • Post #7
  • Sat Jun 28, 2014
Hi, I'm Teresa

I was diagnosed in 07 with leukemia cll and still in the watch and wait. I’ve been having problems for about a year and I think it may be ms. I’ve had several people tell me I should get checked.. I have some slurred speech problems, severe depression, dizziness, lose balance while walking and a lot of muscle cramps spasms. My feet and fingers feel either numb, cold, hot or tingling it hard to tell the difference.. I am so uncoordinated a lot too.. strange headaches too.. and always neauseated and very tired, bladder, bowl problems ( can hardly go and not constipated)does any of those symptoms sound familiar with ms and what type of doctor do I go to for that? I had cervical cancer in 1997 (squamous cell carcinoma) very rare type 2% rare. Had hysterectomy and inside scraping and all cancer removed! Thank God!

  • Post #8
  • Mon Sep 1, 2014
Hi, I'm Vanessa F.

I was just diagnosed with ms, I have had cll for almost 3 years and am in remission. Help I don’t know where to start. I have to have a spinal tap in a week any info would be much appreciated

  • Post #9
  • Sat Oct 1, 2016
Hi, I'm Mongoose

Well, hi. I have both MS and CLL also. I wrote a comment, but somehow it went out to lala land. Frustrating, so I will be back. Very refreshing to find others that have this double-whammy.
Dottie

  • Post #10
  • Fri Jan 27, 2017

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