Multiple Sclerosis and Breast Cancer

topless,

"sit in the river" - best way to cool off!!! I love to do that when we camp.

Small world! My grandparents had a small farm in Charlotte, MI when I was young.

Stanzie,

If you Google Dr. Whitaker, you'll find him embroiled in a lot of controversy. Plus, he sells all the supplements that he's advocating, and the organizations that give him testimony have been started by him. Hmmmm. I could only find one clinical trial for LDN, and the results had not been reported. (huh???) Another red flag is that Dr. Whitaker claims an awful lot of maladies are cured by this treatment. Oh, if it were only that easy! It would be wonderful, because it is cheap and readily available. Of course, that may also make it not very profitable for Big Pharma R&D to pursue, which may explain the lack of trials. I guess we should watch and wait? 

maize, 

Wow. You have a lot of apprehensions about a lot of things. Before you delve into any of this, you need to find new doctors. No matter what treatments they advocate for you, if you don't trust them and if you can't communicate with them, your medical care is compromised.

Another thing - you need to get a definite diagnosis. You can't be treated for MS and/or rheumatoid arthritis and/or an "autoimmune disease" casually. If you have had the proper array of tests, they will be able to sort out the different diseases. Some tests are done to eliminate a certain disease, while others show the possibility of a disease. According to the info you have given us, you really haven't "been diagnosed with an autoimmune disease". No matter what it is, BC takes priority, since it potentially is a killer.

A safer form of radiation? Not sure what you are alluding to.

Like Stanzie mentioned, you need to state your BC diagnosis. Is it only DCIS? The type of BC you have will determine the treatment plan recommended. Your docs - hopefully, your NEW docs, should fully explain all the options to you, and together you should make decisions - as a team. 

If you've read the previous posts on this thread, you have seen where we all agree that BC docs and MS docs have knowledge of their own field, but not the other. It takes a lot of advocacy on our part to work through this crazy maze.

Good luck ~ Shar 

Stanzie,

You wrote: "You also have a lot of posts that include links on a variety of subjects - this seems odd.... Sorry but we all have reasons to be careful on these threads."

My posts are in the hopes that they will be helpful to someone.  I research new treatments for BC hoping that there is something that will be helpful.  Why would it be odd to post on different subjects related to BC on a BC forum?  Please explain what it is that we have to be careful about--I'm sorry, but I really don't know what has occurred that makes you feel that "we all have reasons to be careful on these threads". Maybe something has occurred that I am not aware of.

Did something in my post offend you?  I am a just a patient who's trying to get more information about treatments for people who have auto-immune disorders.

I am trying to find out if there are different BC treatments specifically for people who have auto-immune disorders than there are for people who don't have auto-immune disorders.  I also empathize with anyone who has an auto-immune disorder, because I have an auto-immune disorder.  I know that I have an auto-immune disorder, the doctors are sure of that, but the doctors said further testing is needed to be absolutely sure that it is what they think it is, and so, I have to see a specialist to have a complete diagnosis.

Shar,

Thanks for the info.  I was diagnosed with DCIS, but it is grade 3.  Some people have written on this forum that there are safer forms of radiotherapy (shorter course,  internal, etc.)  and also that people who have RA or scleroderma don't do as well with radiation treatments and even in some cases that it is not recommended???  The doctors appear to be certain that I have an auto-immune disease, but it hasn't been definitively diagnosed as rheumatoid arthritis, at least not yet, though all tests so far point to that.  They did do tests for MS.  My impression is this: that they can tell if it is MS from the MRI results?  Is that correct?  As I understand it, there is still the possibility that it may be scleroderma or lupus--I have to get a definitive diagnosis from a specialist and that apparently will involve more testing in the future just to be sure that the original diagnosis is correct.  As it's been written here, some women regret having radiotherapy and I feel sorry and it concerns me since one doctor is pushing me to have conventional radiotherapy ASAP before I will know the final diagnosis re: the auto-immune disease.  People's regrets for having radiotherapy are a concern and what other patients experience is very important, IMO.  I asked about RA on this forum, but no one responded.

I am a bit concerned that what one doctor tells me is the opposite of what two others tell me. I am puzzled as to why one doctor's viewpoint is so different from the others.  I need to feel confident that the doctor who is treating is telling me what the medical community knows about treatments and risks for people with auto-immune disorders because any choices made in the near future could have a long term impact on health. I also believe we can learn from other people's experiences if they tell us what happened.

Since I am new to this and don't know much about BC, I am asking all sorts of questions.  Please bear with me.  This is all new to me.  Until recently, I didn't even really understand what DCIS is. I am also overwhelmed by two diagnoses in such a short time.  If something odd or unusual happened to or about members on this forum,  I don't know about it.  Good luck to you, too!

maize,

Of course you are overwhelmed. Hearing that you have DCIS is bad enough, but then wondering if you have another life-altering disease, just piles on the stress.

I'm confused about your doctor situation. Which type of docs are you seeing? A GP may recognize a certain autoimmune disorder, but a specialist is really needed to confirm the diagnosis. These diseases can be sneaky and mimic other maladies. The presenting symptoms can be those that are common in many diseases. Sometimes it is just a process of elimination before the specialist can give you a definite diagnosis. In my own experience with MS diagnosis, I presented with very common MS symptoms, but went through MRI, lumbar puncture (spinal tap), and an extensive neurological exam before my neurologist called it MS.  

The MRI shows abnormalities of the brain and spinal cord. In MS, it will show MS plaques or lesions, but even then, the neuroradiologist called it "evidence of demyelinating disease". There are other demyelinating diseases, although less common than MS.

These autoimmune diseases are life-changers, and should never be taken lightly. They tend to be chronic and their medications/treatments usually long-term. And then when you throw in a diagnosis of BC (or DCIS, in your case), your medical care needs to be coordinated with all your caregivers, because your medications/treatments can conflict with each other, interfering with efficacy or even causing harm. With my MS and BC diagnoses, I had to stop MS immune-therapy due to upcoming BC chemotherapy, and post BC treatment, I had to change to a different MS therapy altogether. What a mess! However, I worked with my neurologist, medical oncologist and a research neuroimmunologist to come up with the best plan for me. Will I have problems in the future from all this??? No one really knows - this is uncharted territory - but I have faith in these docs and their expertise. If you don't trust your doctors, you will never feel at ease with their recommendations.

Again, I am confused with your doctor-related conflicts. Are you unhappy with the one doc, or do you distrust them all? Has anyone referred you to a specialist? Are you under the care of an oncologist - in your case, a radiation oncologist? They should be able to address your radiation-related fears. If not, get a second opinion. Maybe you should have a friend/family member go with you to your appointments. It is so easy to 'glass over' when listening to doctor-speak, especially when the diagnosis is frightening.

Just how serious are your possible-autoimmune disorder symptoms? Are they disabling or merely troubling? If they don't pose a threat at this time, treating your DCIS is number one to your docs. Did you have surgery for DCIS? Radiation seems to be the standard protocol, following surgery. Of course, you have to decide if this is what you want - but you need to listen to the reasons for/against radiation therapy before you decide. A good RO should explain this to you. 

You say you are new to all this, but then you second-guess or even "suppose" that this doc will say this or that. Do you have a medical or healthcare background that makes you believe they aren't giving you the right info, or is it all hearsay from 'researching' the internet? There is a lot of information out there, but it is not all correct, and certainly a lot of it is outdated. It really does help to hear about other's experiences with the same problems, but you must realize that everyone is different, and their results may not be your results. Similar maybe, but not usually identical. 

maize, I had the same reaction to your original post as Stanzie did. In looking at your previous posts, I, too, noticed that you link to a lot of different sources on a lot of topics. In checking these links, I found some of them to be really old, and others to be merely expressed opinions. You state that you "like to research new treatments", but do you really feel that you are qualified to make those judgements at this time? Maybe you should get a little experience under your belt, eh?  I think we also wonder if someone is pushing their own personal agenda with so many outside links. It's understandable that you are scared and grasping at straws, but you must also understand that we all want answers...but answers that have been carefully researched, tested and peer-review documented. 

Welcome to the group. Hopefully you will find the support and encouragement that you need to make your way on this crazy journey, without fear and too much frustration. 

First step...find a doc you can believe in!

Take care ~ Shar 

The bickering was surprising to me as well. It may not be intended that way, but that's how it reads on some threads. I guess some people must try to take advantage for their own gain causing suspicion. I haven't been here long enough for that. Don't be too discouraged if you feel misunderstood.



I remember how distressing getting diagnosed with MS was and then BC distressing, but different maybe due to maturity or being used to chronic illness. I feel for you going through both at once. It must be overwhelming. Hang on there.

I am a British mum, aged 54, diagnosed with breast cancer last year and relapsing remitting MS 24 years ago. My mother, sister and brother had BC but I was told it was not 'familial'. I could not find much help in England and have read your posts with interest! I have found the only way to get through this horrible time is with an enormous sense of humour. (www.everythingsgonetitsup.blogspot.com) I have hidden the MS from the rest of the world for the last two decades but now I'm bald, with a stick and one breast missing, I'm not sure how much longer I can hide either condition. Could Fatigue be caused by either BC or MS or is possible to have both? Can anyone help? Thanks!

I agree yes with MS there is fatigue and with BC especially going through treatments and perhaps a bit of depression(?) fatigue again. I have used provigil and it is certainly a life saver but I found once I no longer had estrogen that it wasn't enough so my Doc put me on Adderall. It helps me more with the fatigue and being able to move but provigil helped more cognatively, I think, kind of cleared out the cob webs at the same time helping with the fatigue. Since the Adderall is the type of med that the presc. has to be mailed every month and my Doc's office isn't good about checking messages I have the provigil to help me through or when I need more cognative help... hope this makes sense.

Dotty, just remember at the least the bald part isn't permanant - can't wait to look at the blog you listed - humor always helps! 

Stanzy,



Is Adderall like Ritalin? I will talk to my neuro about trying it as I have no ovaries and will be on Arimidex once I'm healed. Had to stop estrogen replacement with BC dx.

im going to take a chance, and say yes, i thought this was a thread SPECIFIC to bc  and MS; there are other threads about OTHER auto immune diseases. ive been dxed with fibro, as well, but i kinda discount it. i think it s part/parcel to MS..

  i was here in the beg, but since i don't believe in taking any auto immune supressants now. per my neuro; i read (you now stanzie) but i don't post often. i've acommadated ms for 24 years, but never underestimate this darn sneaky disease...........3jaysmom

Hi Stanzie,

Isn't it crazy that the only way we can tell if Copaxone, or any other MS tx is working, is when we have an attack on it, or go off of it and then have attacks? When I saw the neuroimmunologist/researcher in June, he said that since I was put on treatment immediately upon dx (2003), that it would be impossible to know if the treatment had held MS at bay, or if I had had it long enough now that I was moving into the next phase, secondary progressive, with the inflammation stage no longer active. (I haven't had a relapse since 2008). He, along with my neuro and myself, think I have had it for a long time, perhaps 20+ years. When I think back, there were a lot of weird signs, but not enough for me to seek medical help. Heck, I didn't know anything about MS way back then!

He told me that I might want to go off of tx in the future, just to see if that may be true. Right now, I don't want to take that chance, especially since I have insurance, but that may be my course of action in the future, when my Hubby retires. Hmmmm.

3jays - haven't heard from you in a long while - hello, again! You know it...this disease is sneaky crazy!!! 

Waiting...and waiting...and waiting for Fall and cool weather ~ Shar 

3jaysmom,



I never thought about the immune suppressing drugs with respect to the BC. We do need to hope the MS remains stable don't we? Oh wow....I have been on both Avonex and Copaxone in the past but nothing now. Hmmm. I average one attack per year requiring steroids but neuro said I won't go back on ABC drugs unless 2 attacks in 6 month period. But....he said that before BC. Oh my.



What did PT say about mobility getting worse? It's worse because all they focused on was exercise and not getting overheated?

Beckers,

The "usual" course of MS is 1st the inflammatory stage where relapses occur and active lesions/plaques can be seen on the CNS. The year I was diagnosed, I had many attacks and the brain/spinal cord lesions that were active would 'light up' on MRI. These were active areas of inflammation. I would have new lesions and new symptoms, but also had some lesions get better - a little bit of healing, but not completely. Sometimes the nervous system can reroute messages, so sometimes it seems that symptoms can improve.

As you move along the course of the disease, eventually the active period subsides, and the existing lesions no longer light up, because inflammation has quieted down. Of course, you still have the lingering damage to deal with, and since MS is a progressive disease, disabilities can get worse. The damaged CNS tissue is sclerotic (hardened, scarred) and no longer has the ability to heal or reroute messages, so the affected muscles or other parts become weaker. This is often seen around the 10 year mark, but of course, can vary. I have problems with my left leg. Even though I haven't had an active relapse, my leg is getting worse. The proper messages aren't getting through and now spasticity and weakness are causing me more disability.

The inflammatory stage is usually seen as RRMS (relapsing-remitting) or PPMS (primary progressive). The quieter period is usually seen as SPMS (secondary progressive).

It's amazing how differently we all are affected. Just this small group on this thread shows that. And...who is "usual" ???!!! 

Hope you stay lucky, Rebecca! 

~ Shar (aka Grandma Wobbles) 

Thank you Spica! I'm meeting with my new neuro next week so Thinking about the MS more this week.

Hi there,



I just met with my new neurologist who wants me to go on Rebiff. I'm scared to death of immune modifying drugs since getting bilateral BC. He says I should be treating the MS. Honestly....I don't want to.



Your thoughts?????

Beckers- You are only 5 weeks out- no give yourself a break and yes the surgery involving the stomach muscles is very difficult to recover from. I had the Lat recon and they told me 6 weeks and it took me much longer to feel even partly "normal". Everyone is different and if you can only go 10 houses then just keep doing the 10 houses till you feel stronger... I had laproscopic surgery back in the 80's and that took a long time to be able to move around normally and that was just a tiny incision. You are doing fine= just the fact that you are out and moving is great and exactly what you should be doing... I know it is hard not to compare yourself to others but really everyone is just so different and yes I think MS and the fatigue does add another layer.

As for Rebif - I don't know much about it as I am on Copoxone. Any particular reason he liked this med for you? What do you mean by at this point 50% can become progressive??? are you having more symptoms or did more lesions show up on an MRI?