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Chemo for MS?
Today in my neurologist office he went over and over and over and reviewed and reviewed and reviewed my recent MRI and then he showed me a picture of the head and where the lesions were around sort of above my ear and said they are where Ms lesions would be I have been going to him for over 10 years and having MRIs every year as at age 55 I had some kind of a small stroke and the MRI and spinal tap show several lesions more in the brain only a couple in the spinal tap but no real other symptoms I was complaining of. So now 10 years later I see him today and he's really really reviewing my history and my most recent MRI. He shows me where the lesions are around my ear and says do I want to start chemo. I don't know why you ask me that and I was so dumb struck I didn't even ask him why would you ask me that. So here I am at home oh I'm sorry I forgot one thing he also asked me if maybe if I wanted to do a spinal tap to I guess verify it better. Then we started talking about symptoms end I guess I rationalize a lot of things that happen to me and now that I'm sitting at home thinking I guess I should have told him things like I was diagnosed with wet macular degeneration last year and lost the sight in one of my eyes. I am so nearsighted that I really didn't notice my vision was going I just kept thinking that I needed to get new glasses and when I was finally able to do that 2 years down the road it was discovered that I had lost Vision in the left eye. Well I just don't want this to go on and on I just my main question is why would he ask me if I wanted to have chemo because I associate chemo with cancer not with MS. Could you give me some questions I need to ask my doctor and also it was decided I would see him in 6 months or less something happened and he told me to contact him if anything changed and when I asked him well what do you mean by anything what should I be looking for you just said any little change. So here I am at home wondering if I was going to overthink this or as usual rationalize every little ache and pain in under sink this I have spoken with my husband and he says he doesn't notice any big changes in me other than I can't go up the stairs normally I have to take them one at a time now cuz I don't have the strength to lift my legs properly and the other thing that recently happened was I pulled the hamstring in my left bottom below my bottom I guess it is and I didn't do anything stressful to cause this. I have been walking for over a year building up from a half mile to almost 3 miles a day I don't run I don't push I just walk so I don't know how I pulled my hamstring fat is it concerned and of course it's a muscle to right. So if anyone can answer my question about the chemo and some suggestions about questions I need to ask my doctor I appreciate it thank you.
Hi. I think the problem is that you're misunderstanding the terminology used in MS. For instance, at one point you say 'spinal tap' when I'm pretty sure you mean spinal cord. And by lesions 'near your ear' you may mean in your brain but close to where your ear mechanism starts in the brain. And so on.
It would be helpful if you quoted here the exact words written under Impressions in the all the radiology reports that accompany your MRI images. If you don't have these you can easily request them at the MRI center.
Meanwhile, please do get in to see your neurologist. Take a written list of questions but make it brief.. Ask what parts of the blood tests, physical exam and MRI led him to conclude you have MS. Ask him to show you the lesions on the MRI images. Finally, ask him why he used the word 'chemo' at this point, when it's your understanding that there are many MS treatment choices that cannot be considered chemo. He may have a good reason for this choice, but if so, he hasn't explained it to you.
Many neuros hurry their patients along, but that doesn't mean you're not entitled to answers, and a written list will allow this to happen fairly quickly. If possible, take someone else to your appointment to be another set of ears for you as you learn more about this situation. Don't make any commitments to treatment at this point, as it's still a learning session.
After this, think over what you've learned, and feel free to ask here again. You may or may not have confidence in this particular doctor, and you may well want a second opinion, especially from a neuro who truly specializes in MS. There are a lot of neurological diseases out there, and every neuro cannot be up to date on all of them.
If you are satisfied you have MS, I urge you to read up on it. Go to good web sites such as that of the National MS Society. Also well-regarded research organizations, universities, hospitals, etc. Avoid general chat sites since they can't be relied on for accurate info, and avoid anyplace with something to sell. Usually these are .com sites.
Finally, assuming you do have MS and are fully briefed about treatment options, choose your doctor and winnow down the list of medications to a few possibilities to be discussed with the doctor. Also, the National MS Society often presents programs for the newly diagnosed. Get in touch with your local chapter for information on this and other support.
Hope this has helped.
ess
It would be helpful if you quoted here the exact words written under Impressions in the all the radiology reports that accompany your MRI images. If you don't have these you can easily request them at the MRI center.
Meanwhile, please do get in to see your neurologist. Take a written list of questions but make it brief.. Ask what parts of the blood tests, physical exam and MRI led him to conclude you have MS. Ask him to show you the lesions on the MRI images. Finally, ask him why he used the word 'chemo' at this point, when it's your understanding that there are many MS treatment choices that cannot be considered chemo. He may have a good reason for this choice, but if so, he hasn't explained it to you.
Many neuros hurry their patients along, but that doesn't mean you're not entitled to answers, and a written list will allow this to happen fairly quickly. If possible, take someone else to your appointment to be another set of ears for you as you learn more about this situation. Don't make any commitments to treatment at this point, as it's still a learning session.
After this, think over what you've learned, and feel free to ask here again. You may or may not have confidence in this particular doctor, and you may well want a second opinion, especially from a neuro who truly specializes in MS. There are a lot of neurological diseases out there, and every neuro cannot be up to date on all of them.
If you are satisfied you have MS, I urge you to read up on it. Go to good web sites such as that of the National MS Society. Also well-regarded research organizations, universities, hospitals, etc. Avoid general chat sites since they can't be relied on for accurate info, and avoid anyplace with something to sell. Usually these are .com sites.
Finally, assuming you do have MS and are fully briefed about treatment options, choose your doctor and winnow down the list of medications to a few possibilities to be discussed with the doctor. Also, the National MS Society often presents programs for the newly diagnosed. Get in touch with your local chapter for information on this and other support.
Hope this has helped.
ess
You present a great deal of information. To me much of does not go together. Forinstance spinal taps do not show lesions. Also MS lesions do not exist outside of the central nervous system, like by your ears. As others have urged, you need to have a very plain speakig conversation with your neurologist. If he or she is mentioning spinal tap lesions and MS lesions near your ear I would urge you to find a new neurologist, quickly.
As to chemo, as others have also mentioned, there are MS drugs that can be considered chemo. Most of them have ben approved for the treatment of MS. One in particular has not, Rituxan or rituximab. It is approved as chemotherapy for non-Hodgkins Lymphoma, a kind of cancer. It has been used for the treatment of MS for years with success, but it is considered an "off label" use of the drug.
I have been getting Rituxan for 2 years with no ill effects and my MS has not significantly advanced.
Please have a slow, understandable conversation with your neurologist.
Kyle
As to chemo, as others have also mentioned, there are MS drugs that can be considered chemo. Most of them have ben approved for the treatment of MS. One in particular has not, Rituxan or rituximab. It is approved as chemotherapy for non-Hodgkins Lymphoma, a kind of cancer. It has been used for the treatment of MS for years with success, but it is considered an "off label" use of the drug.
I have been getting Rituxan for 2 years with no ill effects and my MS has not significantly advanced.
Please have a slow, understandable conversation with your neurologist.
Kyle
My regular neuro and the one in Boston both referred to mitoxantrone as chemo.
COMMUNITY LEADER
I should probably point out that I obviously cant count :D that should of read
"There are '5' chemo related treatments prescribed for MS"
(1) Alemtuzumab (Lemtrada),
(2) Azathioprine (Imuran),
(3) Cyclophosphamide (Endoxana),
(4) Methotrexate (Maxtrex)
(5) Mitoxantrone (Novantrone)
......"the other '4' are generally prescribed after being on other DMD's that have failed"
Cheers.......JJ
"There are '5' chemo related treatments prescribed for MS"
(1) Alemtuzumab (Lemtrada),
(2) Azathioprine (Imuran),
(3) Cyclophosphamide (Endoxana),
(4) Methotrexate (Maxtrex)
(5) Mitoxantrone (Novantrone)
......"the other '4' are generally prescribed after being on other DMD's that have failed"
Cheers.......JJ
COMMUNITY LEADER
HI and welcome to our little MS community,
I would highly recommend you contact your neuro within the next few days, either by email or phone, as it is very important for your mental health to have clarification on if you have actually been officially diagnosed with MS or not!
I actually found it difficult to follow your post, in all these years i've never heard of this type of situation happening before, to me it' would be highly unusual for neurologists to ask MS patients if they "want to start Chemo" when MS treatments are typically referred to as disease modifying drugs (DMD's) or disease modifying therapies/treatments (DMT's) (see below list of MS DMD's)
http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-The-MS-Disease-Modifying-Medications.pdf
There are 4 chemo related treatments prescribed for MS Alemtuzumab (Lemtrada), Azathioprine (Imuran), Cyclophosphamide (Endoxana), Methotrexate (Maxtrex) and Mitoxantrone (Novantrone). As far as i'm aware only Alemtuzumab (Lemtrada) is a 'first line treatment' for MS, the other 3 are generally prescribed after being on other DMD's that have failed, with Avonex® (interferon beta-1a), Betaseron® (interferon beta-1b) and Copaxone® (glatiramer acetate) still being the more common named DMD's mentioned by neuro's to start off with......
Visual issues are very common in MS but macular degeneration is not actually caused by neurological conditions like MS, the common visual condition associated with MS are Optic Neuritis, Diplopia, Nystagmus so it might be worth double checking what visual issue you have if MS is probable, just in case your MD diagnosis is inaccurate.
I genuinely think there might be some confusion as to what your neuro was telling you.....generally IF someone is diagnosed with MS, their neuro will advice the newly diagnosed MSer of which DMD he/she recommends but the patient gets some choice in which first line DMD they start off on, and to give the patient time to decide, the follow up appointment is usually weeks to a few months.
Generally IF someone is initially suspected of having MS, neuro's will schedule appointments in 6 months to a year, with the advice to contact if anything changes or happens in the mean time, it's the 'wait and see' approach when there isn't enough diagnostic evidence to diagnose.
Hope that helps........JJ
I would highly recommend you contact your neuro within the next few days, either by email or phone, as it is very important for your mental health to have clarification on if you have actually been officially diagnosed with MS or not!
I actually found it difficult to follow your post, in all these years i've never heard of this type of situation happening before, to me it' would be highly unusual for neurologists to ask MS patients if they "want to start Chemo" when MS treatments are typically referred to as disease modifying drugs (DMD's) or disease modifying therapies/treatments (DMT's) (see below list of MS DMD's)
http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-The-MS-Disease-Modifying-Medications.pdf
There are 4 chemo related treatments prescribed for MS Alemtuzumab (Lemtrada), Azathioprine (Imuran), Cyclophosphamide (Endoxana), Methotrexate (Maxtrex) and Mitoxantrone (Novantrone). As far as i'm aware only Alemtuzumab (Lemtrada) is a 'first line treatment' for MS, the other 3 are generally prescribed after being on other DMD's that have failed, with Avonex® (interferon beta-1a), Betaseron® (interferon beta-1b) and Copaxone® (glatiramer acetate) still being the more common named DMD's mentioned by neuro's to start off with......
Visual issues are very common in MS but macular degeneration is not actually caused by neurological conditions like MS, the common visual condition associated with MS are Optic Neuritis, Diplopia, Nystagmus so it might be worth double checking what visual issue you have if MS is probable, just in case your MD diagnosis is inaccurate.
I genuinely think there might be some confusion as to what your neuro was telling you.....generally IF someone is diagnosed with MS, their neuro will advice the newly diagnosed MSer of which DMD he/she recommends but the patient gets some choice in which first line DMD they start off on, and to give the patient time to decide, the follow up appointment is usually weeks to a few months.
Generally IF someone is initially suspected of having MS, neuro's will schedule appointments in 6 months to a year, with the advice to contact if anything changes or happens in the mean time, it's the 'wait and see' approach when there isn't enough diagnostic evidence to diagnose.
Hope that helps........JJ
2 Comments
I agree with JJ. I've never heard of a neurologist using the word "Chemo", even if that's what the drug technically is. It's just not the wording they use if they're interested in effectively communicating with their patients and not causing undue panic. That would be a black mark in my book regarding this neuro.
*I should specify I meant in the context of MS.
I could not read your thread because I like many MSers can't read big blocks of print.
Rituxan is a great drug. I have at least a dozen friends who are on or have been on it. They liked that they did not have to come in every month for infusions like Tysabri. It has done well with their MS.
Most of them tolerated it well. It is chemo but it is not like the chemos I am on for ovarian cancer You do not lose your hair and Rituxan usually has few side effects. Rituxan has been in use a long time. They do not know the long term effects of many of the new drugs.
You might be afraid of IVs which is actually plastic. They use a needle to thread it. They are not so bad when you get used to them.
Of all the DMDs Tecfidera, Gilenya, Aubagio, etc it is Rituxan that I would do.
Alex
Rituxan is a great drug. I have at least a dozen friends who are on or have been on it. They liked that they did not have to come in every month for infusions like Tysabri. It has done well with their MS.
Most of them tolerated it well. It is chemo but it is not like the chemos I am on for ovarian cancer You do not lose your hair and Rituxan usually has few side effects. Rituxan has been in use a long time. They do not know the long term effects of many of the new drugs.
You might be afraid of IVs which is actually plastic. They use a needle to thread it. They are not so bad when you get used to them.
Of all the DMDs Tecfidera, Gilenya, Aubagio, etc it is Rituxan that I would do.
Alex
I have many friends on Rituxan and they love it. Lesser infusions then Tysabri. If I progress I will happily go on Rituxan. Yes it a chemo drug but not like the chemo drugs I am on for cancer. It is one of the oldest drugs for MS .It is all a benefit/risk formula.
Could you please divide up your text next time. People with MS often have trouble with large blocks of type.
You can have progression with or with out symptoms. Neurologists go by the MRI. Your walking also has a lot to do with it.
Alex
Could you please divide up your text next time. People with MS often have trouble with large blocks of type.
You can have progression with or with out symptoms. Neurologists go by the MRI. Your walking also has a lot to do with it.
Alex
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