Penultimate day of questions, thank you for all the responses so far!
The previous resources have focused on treatment decisions. Now, we’d like you to think about what other aspects of your life and condition you might want or require support in talking to your doctor? For example:
- Lifestyle and wellbeing (exercise, eating well)
- Accessing support in your area
- Care partner support
Every aspect of your life can affect MS. Stress, heat, diet, rest, family issues, guilt for what you can not do anymore. You have to change your whole mind set. A doctor can get you started but you have to learn what is good for you and do it. I have MS friend that know what they are doing is not good for them and they do it anyway. It is very hard but you must listen to your body.
"you have to learn what is good for you and do it" Which is SOOO True, I can call my doc or basically communicate electronically via My chart, but doctors often belong to a big megalopolis medical community and it isn't lije having the "old fashion" doc of your who kept in touch. So for me I do a lot of reading online, That can be good or not good, If I have a concern I send a message to my doctor, Otherwise I feel I am on my own, The only issue for me is that I tend not to cantact a doctor and if it were a problem I might not contact or let it go to see if the problem resolves and it could be more serious than I thought.
I believe that food is medicine and leading an as active life as we can makes all the difference. I also found that it depends where you get your care determines how the doctor handles talking about these topics. I am very happy that my doctor is not of the old school, “go home and rest”. It does no one any good ms or just living to a ripe old age with health. They also need to handle the topic of menopause for us women with ms of that age. Doctors don’t really get involved with insurance and what they cover, like home care or caregiver support. We have to be our own advocate.
My doctor and I have had some very good discussions regarding diet and exercise. Several clinical trials and studies are going on about the types of food/diet plans that are helpful to MS. He keeps me abreast of those things and I share with him as some of the information I have found. I have secondary progressive multiple sclerosis and I am immobile. My physiatrist lead me to a physical therapist who is helping me “exercise quote. In addition I shared with my doctors what I am doing at home. I have a machine called Ex N’ FLEX. I can strap my feet in and the machine works like petals on a bicycle. It gets my legs moving and my circulation going. By sharing this with my doctors they are able to tell other patients about it. I feel sharing information is a 2 Way street. Obviously the doctors are the ones with the medical expertise but I think it’s important for patients to share with they are doing because it may be of benefit to other patients.
I am a woman, my doctor is a man. When I brought up loss of libido he stammered and changed the subject. Doctors, of all people, we should be able to talk about anything and everything openly!
I am recently diagnosed. I am not real happy with my neurologist. I go to one of the finest clinics in the country so I don't question his expertise. I just am very frustrated that he says I am atypical in that I am 60. He had me document my days for 2 months. At that appt. he never even looked at it. I asked him if he wanted to see it he did not. He simply said to continue on amitriptoline and gabapentin and he would see me in 3 months and scheduled additional MRIs prior to appt. (brain, cervical and thoracic). There is never a conversation around my flares, how I am feeling, suggestions of any sort. I feel like a mouse in a maze. So I was diagnosed in January, after a year of tests, I continue to worsen in my symptoms and don't have a clue where to turn. I have been working on changing my diet following the Wahl's Protocol. When I asked my dr his thoughts on that, he shrugged and said you can try it. I do try to keep moving but likely not as consistent as I should be. But when I am not exhausted and fatigued, I do exercise.
Any input would be greatly appreciated.
Hi bethie2739 I'm really really sorry you are being treated that way. And you shouldn't be!!
If you're not comfortable with your Neuro, change it!! I don't care how good he thinks he is! He doesn't sound like he is putting YOU 1st. You are doing what you're supposed to, he should be also☺️
Be your own advocate!! You deserve the best!🤗💕
Call MSAA Toll-Free Helpline: (800) 532-7667 ext. 154 they can help you!!☺️
J🦈
If your not comfortable with the doctors bedside manner then get rid of him.
At the beginning of my diagnosis process my primary got me in with a top 10 doctor in the city and highest ranked neurologist in the city. His bedside manners were horrible and I had to rely on his medical assistant . To answer my questions. I hold the same medical certification as she does. Her's was more specialized in MS.
Why would I give up the best doctor in the city? Thankfully he retired forcing me to find someone else.
I much happier with my new doctor than I was with him.
My experience is similar. I was diagnosed at 70, eight years ago. At my last neuro visit I was seen first by a young man not yet with his MD degree and then had five minutes with the neurologist supervising him. The doctor in training was curious and the other clearly not. Everything I attempted to say, the fear I tried to share, was apparently ignored. My next appointment is next April. I see no need to go back to someone who communicated that she had more important things to do than to listen to a 78 year old woman trying to tell her that she is slowly declining. I wish there were a way to do something radical to get their attention. If you come up with a plan, let me know!
Hi Bettie, I was with a neurologist for about 12 years. He was okay and b/c my MS is rather mild I didn't see him often except for once a year. Can't say he had much of a bedside matter, so to speak, but he said the medication was working and I think he had a point. On the other hand he did not feel I needed an MRI after the first two in the beginning. I do a lot of reading and although I saw his point I wash't so sure.Then after 12 yrs he said okay. The MRI was not changed but he wasn't sure and wanted me to see an MS specialist. That is when I left him and started seeing the specialist. I felt I could talk with her more easily and I have had a couple MRI's since which are negative. Although I can't say the original neurologist was not good, I see a big difference with the specialist. Not having any MRI's for 11 yrs did not allow the new neurologist to have a history to look at-therein lied the problem. At least I have been OK but I think an MRI now and then is important.
MS really is a snowflake disease; every patient is affected differently, with the rate of disease progression varying. As such, specific needs differ among the MS patient population. A good healthcare provider should take those differences into consideration when providing/recommending care for individual patients.
In the US, some healthcare (drugs, physical/occupational therapy visits, and other ancillary support services) can be dictated by a patient's health insurance provider. A good MS doctor should be informed of these policies/limitations and work around them.
In addition to discussions about potential DMDs, MS Neurologists should be supportive of healthy lifestyle choices, including nutrition, exercise/movement and even positive mindset. Even if these physicians can't provide these services themselves, offering links to resources that MS patients and their caregivers could access would be very helpful.
Very well said!
HelenHU Communication is key. I encourage everyone to find a doctor that they are comfortable with. I cannot emphasize that point enough. My doctor is in a practice that belongs to a network. If she cannot address my concern, she refers me to a specialist that can. I love my medical team! 
carolek572 There are vast differences in health care that vary by region. Resources (including recommendations) are more abundant in large metropolitan areas.
I agree, goatgal and wish that it wasn't that way. I am happy that I live in an area, Boston, where the health care is world renown.
Indeed it is! But moving from a familiar region to one unfamiliar is difficult for anyone, but to move as an elder or with increasing disability, it becomes almost impossible without enormous support and resources.
What slays me is the apparently universal MD knowledge than older people don't get MS. That is such a pisser I just can't believe that level of ignorance. I have asked what prevents an older person from having or developing MS? No answer because they don't know. I asked if there were dementias like MS? No, they all have said though dementias are always listed as the differential. I was particularly interested in their response to relapsing SS. No answer. I don't listen to that ignorance any more.That is exactly what the first neurologist told me. I emphasized to her that my history was redolent with flares followed by loss of function. She just couldn't hear it. That went on for years with one doc or another. It was only when I couldn't walk that this new VA doc began listening. Then he reevaluated my record including my MRIs.
The outcome would probably have been the same i.e. SPMS, but perhaps I could have gotten some help especially with the fatigue and the clumsiness, spasms, incoordination, fatigue --did I mention that already? Maybe I could have gotten early retirement for a handicap and been in better shape now than I am now.
One can't help wondering how many diseases women (especially) and men get as they age that might really be MS but no one is looking. There is incredible variation in courses and timing of everything having to do with MS and much too much overlap with other degenerating CNS and PNS diseases.
Where to begin. Exercise is probably at the top of the list. Finding exercises that are tailored for people with limited mobility can be a challenge.
Another would be resources that deal with specific aspects of MS that many of us deal with like the different ways to manage spasticity or the best AFOs that can help with drop foot. So many of these these tips we have to glean across the web or forums and the more this information can be centralized the better.
A newly opened Gait Clinic was recently featured in the Richmond Times Dispatch. It is designed to help those recovering from amputation and joint replacement. No mention was made in the feature about neurological problems but wouldn't it be wonderful if there were MS clinics to address gait and balance issues? I intend to call the clinic next week to see if I would be eligible for their specialized services. If what I learn is helpful, I will share it here.
I agree! When I was diagnosed in 2013 I lived in Germany and they have a group of rehab clinics (Kliniken Schmieder) that deal with all neurological disorders (not just MS). They covered everything from nutrition and DMTs, to exercise, flexibility, occupational therapy and more. And for people with advanced problems with mobility they offered individualized care. My German health insurance covered almost everything and I was there 6 weeks. I so wish the US had something like that. I would go back in a heartbeat if I could afford it out of pocket because I know Aetna would never pay for it.
I don't want to go anywhere else. I want our country to get better for patients' needs,
Corran731 The model of health care used in many other countries is more patient oriented than the US model. Medicare is better than nothing but it is hardly enlightened; for example, covers diagnostic MRIs but not follow up every six months, does not cover a complete blood panel if a patient is not hospitalized even though a physician suspects sepsis. There are probably more examples but I have personal experience with these two. Thanks to a previous employer's financial error and a union contract, I have retained lifetime benefits with private insurance so I am well taken care of (the policy is generous to a fault), but others are not so fortunate.
My neurologist has done a pretty good job at recommending other health care professionals such as PT and and OT. This wasn't what I really needed.
My needs were psychological based. She couldn't reccomend anyone that specialized in MS. She couldn't reccomend anyone. I found a psychologist on my own who really knew anything about MS. She was somewhat helpful with my depression and could not rap her arms around my fears or anxiety. After 5 months of counseling I figured she wasn't going to be of anymore help. In the meantime I found this site and I get more out of it than what I did with therapy.
I am a cancer survivor and I see my oncologist once year for follow up. One of her goals during the cancer treatment was to help me feel better on the MS side as well. A full dose of steroids make a huge difference on how I feel. Her thoughts on that was wondering if my adrenal gland was functioning properly and ordered the test. I feel in range but at the very low end of proper.
I just had scene her last week and she provided a list of health care based psychologist. If she has that, then so should my neurologist.
This site has taken the care partner aspect of things.
I’m so grateful for this forum for the emotional support and for the information presented here. It’s unfortunate that my neurologist’s office has given me no information about physical therapy or where I can find local services if I need them. My PCP NP has been the one who discusses diet, physical therapy and exercise, and talk to me about resources the need arises. Most information I have is what I’ve searched for myself. That’s a daunting task when energy levels are low or cognitive fog sets in.
So far I’ve needed my MD to check a vitamin D level more often, permission/advice for family planning (two separate times with different DMTs and both using fertility treatments), and advice about a marathon. Most of the other lifestyle things I don’t discuss because I don’t need her help/permission/advice with, like meditation, nutrition, etc.
I am pretty independent and on my own for the most part when it comes to medicine. But emotionally it would be nice if someone, if not the doctor but her nurse or PA, could check in once every few months just to say hello and check in. That doesn't seem to happen much these days. Everyone online, anyways, talks about the team approach. I don't see that as a reality. If there is a problem, a doctor my consult with others, but otherwise, is there a team? I don't think so. I do my own research and I like sites like this to hear what others say and to find out what is new with MS
Yes to the three areas mentioned plus counselors who specialize in families or people with a chronic illness.
What would make a difference to me in my circumstances would be to think that anyone on my care team cared. I take care of myself, I know myself, I don't go to extremes...but when MS is known to foster depression, it would be helpful if those who purport to treat this disease would be better listeners, ask genuine questions, and broaden their perspective.
My life style is the same as before my MS diagnosis, except my body does not work so I don't get much done. I do not exercise and my diet is the same as before. I don't look for outside support, that takes time that I don't have. My wife helps a lot (I feel very bad about that) and my children and grandchildren help when they can. They have lives of their own. MS effects me but I try to not let it effect others I care for. I have dealt with the symptoms for as long as I can remember, they have just gotten more intense with age. My interactions with doctors and medication has done more harm than good these last 11 years.
I empathize with what you say except that I don't think my providers have done more harm. I rely on myself so far. Should things get worse, then hopefully the support will be there.
Doctors need to discuss the importance of diet and exercise with their patients and help them get started by providing info on these things.
Our local M.S. Clinic sponsors a vast number of programs, itself, & keeps us informed on other programs & events that may interest us.
I would like to know where I can get support in my area; I did go to a MS support group, but it is a distance and I can't drive.
In order to be well, I have been mindful of what I ate and drank since a teen ager. Being athletic by nature, I was a long distance runner and swimmer most of my life. Being academic by nature, I went to school in my areas of interest and accumulated 500 college credit hours with two terminal degrees and one MSN. It has always been incumbent upon me to decide what was best for my body...it didn't ever take long after I ate or drank inappropriately that my body protested. However,
...where you live can be a life enhancer or life ender. This place in west-central PA is an ender. Aging Services or hospice providers do not like to leave their towns to help elders. And they won't do it. The local hospitals within 30 miles are Class Cs and may do O.K. with ordinary medicine, but not too well with other common things like angioedema. I didn't realize any of this when my late husband and I moved here in 1998 to establish his business. Now it has become such a "poor" area houses are not selling and have not for a number of years. There are no stores. No facilities. No busses, taxies,, etc. Therefore, poor and elderly people are aging in place with no respite. Literally. And the stress is enormous. The numbers of young people who might help have been so reduced by the lack of jobs and industries, they left. My kids and my birth family are thousands of miles away.
If I did not have my friend to help me, I surely would have died and it would have been from neglect. Not necessarily self neglect but societal neglect. I do have my SS income which is decent but has not kept up with the cost of living in any respect.
Dear HelenHU, this place where I live without resources for diseases like MS, heart disease, diabetes, or any disease we can think of, is essentially 100 miles from the nearest large city. Even in that large city there is very little MS supportive activity as far as I can tell and it is too far to go there frequently. People who live and work in that city to not realize we in the boondocks don't have high speed internet, our cell phones are generally not operable, the doctor is 30 to 50+ miles away, even the nearest ambulance is at least 20 miles away.
I read only last night that there is going to be a huge societal crises in about 10 years regarding the huge numbers of newly become elderly in the USA. Many elderly are now homeless in the USA though it is not common knowledge. I just received a sudden increase of my electric bill of $1000. I am so stressed by that I cannot function effectively...I will become homeless if I get more than one of those! The elderly are no longer considered useful (no matter what we really do inreality) and not as important as people who are younger. It is going to become very interesting very soon.
Eating right & exercise is important if you have MS or not but knowing what foods and exercises are good for a person with MS can be confusing. I know there are some foods and exercises that can exacerbate MS. It would be nice to be able to have the doctor give the patient a list of foods that should be avoided and exercises that will help promote muscle strength without causing spasms. Over the past 14 years I have had to find out these things through trial and error.
As far as support in my area, I do not know of any support groups, yet there are several people in my area with MS. I personally would rather use websites such as this one.
Care partner support groups might also be nice or even a website that they can get together and talk about things such as this website does.
Info on available assistive devices and how/where to get them, if any are covered by insurance or if there is a resource that will let you borrow items to see if they help before you buy.
Info on local support groups.
Tips on exercise & eating well considering my health status.
Tips on accessing support in my area.
Latest breaking MS treatment news for my version of MS.
Asking if I have any comorbidies that he/she notices (or hears about from me) and what I should do about them.
