Hi everyone,I haven't been on here in a bit. Things seemed to be going ok until they weren't. I had an ER visit at the end of April, and the neurologist told me to hold ocrevus for now. They weren't sure what was going, the thought was I experienced a complex migraine. I also have been having elevated blood pressure during all of that. I spoke with him today, as my MS symptoms increased, with new symptoms in my left leg, and I thought this might be occurring due to the ocrevus losing its effectiveness as I would be going for an infusion about this time, and am now not. My neurologist doesn't seem to think my symptoms are related to my ms and thinks the arthritis in my neck is causing these symptoms to occur, and I am having a hard time making sense of all of this. The symptoms that are getting worse include mt ms hug getting worse and more painful, and new symptoms in my left leg. I had an emg recently for the left arm and leg, and nothing was found to indicate the neurological symptoms have anything to do with my neck or low back arthritis. He said my pain doctor needs to figure this out, and it isn't the ms. He doesn't think my pain is the result of my ms either. I am so upset and feel like I am not being heard. I am angry, and feel like he is not hearing me. He's having me get new MRIs again, I just had 3 in May with no new findings. I am not sure what to make of any of this. The symptoms I have in my right arm and leg could be neck and lesion related. Some of them would not have anything to do with the arthritis at all. I don't understand what I am supposed to do. He says my blood pressure needs to be more stable or I cannot go back on the ocrevus, he also suggested rituximab. So, the ocrevus has worn off, I am not on any treatment right now, I am concerned that I am getting worse, and all of my concerns are being put off until after I get another set of MRIs, and he thinks my pain doctor is going to be able to address what is going on. If anyone has any thoughts, I would appreciate it.
Upset: Hi everyone,I haven't been on here... - My MSAA Community
Upset
So sorry for your pain & the time to get a proper diagnosis. I have no words of wisdom. Except they are looking at other possibilities & hopefully they are coming soon. In meantime I know my prayers & others will be storming heaven for you.
So sorry for your pain & the time to get a proper diagnosis. I have no words of wisdom. Except they are looking at other possibilities & hopefully they are coming soon. In meantime I know my prayers & others will be storming heaven for you.
Thanks. It is frustrating at this time. I feel like I may have to consider a new neurologist. The problem is he is my 4th. My pain doctor keeps mentioning I should go somewhere better to get things figured out. I'm not sure if this is the right time, but maybe it is. I think a lot of my issues get discounted at times because I have spine lesions, but very little disease in my brain. My last brain mri was without lesions. The ones I did have disappeared. But, I have 2 more in my spine that have been there,, but were only mentioned with my most recent mri. Some research I have found is starting to show that it is not about how many lesions, but where they are and what symptoms they cause. I feel like, if I had a lot of disease activity, they would treat me differently.
You might consider the advice of your pain doctor. Doctors are very cautious about criticizing others in their profession, but the pain doctor is coming close. It sounds like good advice to look for another neuro. My impressions of most neurologists I have encountered is that they are not good detectives, but where MS is concerned, depend on DMT to eliminate symptoms. If a DMT is ineffective, or unable to be prescribed, some neuros lose interest in a patient.
Thanks. I agree with you on this. He has mentioned a hospital in New York he is familiar with. He feels I need to go somewhere where there is a higher incidence of ms to get better guidance and treatment. He feels the doctos in the Midwest may not be as good as other areas might be. He said mayo or Cleveland clinic may be an option also.
I know what you’re feeling about migraines not ms related. My pain clinic got hacked along with 50 others and two hospitals so my pain doctor hasn’t been able to view MRI’s yet. I go in Thursday for review of them and have been taking Nurtec for headaches that has helped and also due Botox injections in my neck and head which has also helped 👍🏼. So prayers are with you that you can get things figured out 🙏👍🏼😉
Thanks for your response. He doesn't seem sure what to do. If I had more going g on in my brain, he would probably care more about it. At least, that is the impression. I have been told my other neuro doctors that I don't have a lot of disease and I should be fine. Research is showing that is not always true, and some with few lesions have more progression. I keep getting worse no matter what med so far. It sucks. He didn't even talk about what I can do for the migraines when they occur.
Just one last thought to rule out arthritis in neck causing issues, see a good conservative orthopedic spine dr. I am riddled with arthritis I know it does cause issues. sometimes a third eye will help, will either rule it out or give a different perspective. also your pain will raise your blood pressure, please tend to that, very important. I think this disease needs knee high private eyes to put everything together.
Thanks. I do have arthritic changes throughout my spine. I know some of my pain is from that, and some is not. Sometimes the pain caused by the lesions and my arthritis can crossover. Its not always easy to say which one is causing the problems. I do know there are some things that the arthritis doesn't usually cause. Even those, my neuro is saying its not ms. I have the ms hug. I developed that before diagnosis. That symptom is particularly bad at this time, and he feels it is unrelated. I find it difficult as all of these symptoms got worse once the ocrevus started to wear off. I know the meds help decrease inflammation, which can help arthritis too. But for him to say none of it I ms related is so frustrating.
Sometimes I think they are just as flabbergasted as we are. Glad to hear you are researching MS on your own we can only be our own best advocate when we look for ourselves. I know it's hard but you have to relax & calm yourself down so your blood pressure will stabilize before you can get any where, I am praying for you as well as others are here on the forum. God bless & keep you always Mary
It sounds like you and your doctors are dealing with a lot. I would suggest to be patient. However if you don’t feel comfortable with the care that you are receiving, then let your doctor know. Sending you positive thoughts, Jhayespt 🙏
Thanks. I agree with you. This is my 4th neuro and my previous ones stopped listening, so I left them. I am upset when my concerns are dismissed, and, in my experience, sometimes they don't care. My last neuro before this one did not want to see what was going on with my balance, and I had to make him look. I ended up having this figured out, and I have balance issues along with sensory ataxia. I am considering going elsewhere if this dimissiveness continues. I dislike doing this because I have to go through meeting a new one over again, and then trying to determine if I can trust what they say and do.
I understand, Jhayespt , because on one hand, you don’t want to start all over again, but on the other hand, you don’t want to arrest your care either. Life is too precious to just waste. 🙏🙏🙏
Definitely. Its a hard thing to decide to do, and then hope things will be better with someone else. Thank you
I feel for you. One of the most frustrating things is to have more than one disease that can cause the same symptoms. It’s difficult for the medical professionals to sort these things out sometimes and aggravating for us. I have Hashimoto’s in addition to M.S. Both can cause heat sensitivity for example. No one has a way to figure out what is causing it…maybe both! I just have to treat both diseases as best as I can. And as you’ve discovered, the location of lesions are important rather than the number of them . Sometimes location of your lesions can help rule out if a symptom is caused by M.S. or something else. Have you asked your doctor why he doesn’t believe M.S. is causing your pain? The answer to that might help you figure out your next steps.
Try to reduce your stress and anxiety as much as possible to bring down your blood pressure. Easier said than done, I know! Over the years of having M.S., I found what works for me most of the time. Maybe focus on finding those things for now plus finding what non-medication treatments might help with the pain.
Thank you for sharing. It is hard getting answers, especially if you have more than one condition that can cause similar symptoms. I have hashimotos as well, along with raynaud's. Sometimes the symptoms that go along with those conditions can be so similar to ms symptoms. Its difficult for the doctors to figure out which one is doing it, and there may not be an answer. The hard part for me is the not knowing, and I have had to come to terms with that, not always easy to do. I need to start doing some meditation. I also need to exercise more regularly again. The fatigue has been getting in my way a lot, and, probably feeling depressed about all of this. I will end up seeing my neuro again this coming Monday, an appointment I already had scheduled ( had a video visit this week due to the increased symptoms) just to go over thst again, but to address some other things that there wasn't time to discuss on video. I hope I can get clarification on it all, but we will see.
I'm sorry you're experiencing this but they don't like your blood pressure to be high if you're on Ocrevus. I have a lesion on my cervical spine as well as degenerative disc disease in the same area. They were honest and said they couldn't tell if it was the MS or the disc that was causing the pain in my arm. I went to the pain clinic and they gave meds and therapy that didn't really help. The only thing that did was stretching my neck muscles, my yoga teacher helped me stretch the small muscles in my neck and it would alleviate the pain. Now 3 years later I can see it was the MS because I no longer have much pain but much less sensation in that arm.
Thanks, I figured that had to be the case, but I was unable to find anything about that when I tried to research it. I definitely have some symptoms that could be from arthritic changes and the ms. Some of them, the arthritic changes would not cause unless there was some type of spinal cord or nerve impingement going on, which there isn't at this point. I stretch often, and it does not help my pain, but it reduces the tension. Same goes for massage. I may consider other alternative options, as I just found out about an Integrative medical clinic that incorporates many different treatment options. Maybe that is the route I need to take at this point.
You sound like you are going through a bunch of crap. Good for you for holding in there. It's one of the hardest things to do, I find. Dealing with what is and isn't the ms and what new items they may discover on our way. Good on you for holding strong. You have every right to be upset but just keep moving forward.
Thank you. Hopefully I will get more answers. Its hard though, as I am realizing not every problem will have a definitive answer or solution
I’m frustrated for you. For people like us, with a lot going on in several parts of our bodies, the challenges of just daily life are overwhelming. In my dreams, I have a health care team that knows me as an individual and communicates with each other. But that’s a dream. Reality is if I want to keep living I have to research and advocate for myself and take copies of everything to every appointment. Back to you. I’ve actually experienced similar problems. Route of mine ended up being under treated pain. Was on 3 meds for hypertension and was still averaging 175/115. Pain doc said I shouldn’t be in that much pain. Neuro said it wasn’t ms flare. Cardiology said needed to get pain under control. Still don’t know why it occurred. As soon as my pain was under control my b/p became normal with just 1 med at lowest dose. It has now happened 3 times. No idea why. None of the specialists know what it is. We are unique individuals who need unique care. Keeping you in my prayers and hoping today is a good day.
It would be great if our doctors spoke with each and collaborated more to provide the best care. It is a challenge to do that, but, If possible, would be great. I have read a lot, especially since I have other health problems along with the ms. I will write things down, though not as much as I should, so I can go over my symptoms and triggers, if I can pinpoint any. My pain is usually better than this, and most often manageable with my meds. I have tried massage with improvement in muscle tension, but no significant change in pain. Exercise ends up being the same. I rarely have pain-free days anymore. I have had steroids in the past, steroid injections in the back and neck with minimal change. Its crappy when those don't even help. Today is a better day. Thank you for sharing and for the advice.
I rarely comment, never reply again. There is something about you. I care about your journey and the others writing here. “When the system fails you, you create your own system.” I’ve been trying that approach since the “opiod crisis” started and my pain medication was forcibly tapered. I followed the rules and slowly tapered and slowly my body broke down. Spent thousands on other drugs ordered that insurance didn’t cover and didn’t work. My decline was blamed on worsening ms. I felt like I was dying. I felt like medically, they just wanted me to go away and pass me to the next specialist. Then I found the right pain management doctor who slowly got me back to the dose that works for me and was able to taper off all the extra meds prescribed for problems that arose from the tapering. Unfortunately, the sustained hypertension caused permanent heart damage. I’m happy and I’m alive. Acupuncture helped me. Massage hurts me. My theory is if it’s not going to harm me, I’ll try it. Oddly, using a singing bowl truly relaxes me. Best advice I received when newly diagnosed was “Keep Moving”. This is my prayer for you. That you find a really good compassionate doctor that treats you as an individual. You got this. Amen!
Thanks for sharing. My pain specialist has been so helpful to me, often more than the neurologists I have worked with. I see him next week and will see what else he can do to help. I had an emg recently for the left arm and leg, no nerve issues there, which likely means my symptoms in the left are ms related. I am planning to ask for an emg on the right to see if its the same or not. The more I learn, the more I am able to also help myself and ask for what I feel is needed to figure things out. So far, my primary and pain specialist will usually work with me on those things, which has been great. I see my rheumatologist today, maybe she will have some info or insight that might help. I think I need to be retested for some of the ms mimics, the tests were negative before, maybe it will be different now. Thanks again. I feel less alone with everyone's insights and experiences.
I am so sorry you're going through all of this, especially not feeling well and not having your concerns heard! Maybe you might want to consider taking all of past and most current MRI's to a new Neurologist/MS Specialist Sometimes we can encounter a physician who is not a good match for our health journey. The best my friend and feel better soon. Blessings. NeeC
I agree. I am going to see my pain specialist next week. I will ask him about a referral then. I am on my fourth neuro so far. I dislike having to consider switching, but, I may have to.
Wow! I have read all of the posts after your post, and the only thing I can add except do you have my complete sympathy… I do understand where you’re coming from and the frustration that you feel… I am with the others and the fact that if your pain specialist is recommending a different neurologist I would consider that… But is anybody treating your blood pressure? I realize that pain increases your blood pressure, but are you taking a little something for your blood pressure right while your blood pressure is up? If not, then may be a visit to your primary care could get you started with something like that I will add my prayers in there for you… Do not give up there as a solution. 🙏🏼 are you doing any sort of exercises right now? The thing that’s helped my pain more than anything has been going to the water classes to get some gentle movement in. I have lesions and my brain, cervical spine and thoracic spine, several bulging discs and a medley of other exciting things, but truly, the gentle water classes have helped more than anything.
Thanks. My primary is addressing the blood pressure. It has been a bit higher recently when I am at the doctor, and when I have more pain or am upset, it is high. Once I deal with those 2 things, it is typically fine. I stretch a lot and have begun to use my exercise bike again. I was a physical therapist, so I try to keep up my activity when I can. Having the knowledge base has helped me treat myself, but also how to deal with health care system issues since, previously, I have some background in the good and the bad that goes along with it. I did have therapy for my balance and ataxia, unfortunately, it did not improve, but it also did not get worse, which is good. I have considered water based exercise, it could help my balance, and can certainly help pain. I know some therapy clinics in my area that do water therapy, which I may try.
I just wanted to make sure somebody was addressing your blood pressure and not just trying to tell you well you need to get it down… I was a CT Tech for many years so I have helped others negotiate the healthcare system as well as myself and close family and friends. After MS finally forced me to retire I did PT for gait training, balance and endurance for about 4 months until they built me up as far as they could.. I faithfully did my at home exercises and walked as much as possible but felt like I was in a downward spiral. That’s when I went out on my own and joined a local gym that offered plenty of aqua classes.. I started slowly but built myself up to doing at least 3 per week.. there is no fear of falling or becoming unbalanced in the water and I actually feel enabled instead of disabled.. plus all of the classes use a variety of water “ weights” for extra resistance and according to Fitbit one of the three classes that i faithfully do I get a smoking cardio workout.. much more than I could’ve managed on land. When I had to return to the same physical therapy center after 18 months away my primary physical therapist was amazed with how much stronger that I was than when I was there previously.. I am not eligible at this point for Medicare, but there are quite a few supplements that have “silver sneakers” built-in to them and often you can go to many local gyms for free for the greatly reduced price and I will tell you even when I have to pay almost full price, it’s a lot cheaper than copayments with my insurance.
That's great that you were able to improve with the water exercise. People often discount it as not being as good as land based exercise, but I have seen patients improve so much when their pain or other medical conditions would not allow them to do land based activity. I will need to see what places around here have pools, and cost. I used to love swimming also. If I could even swim, I think that could be very helpful. Thanks you for sharing your experience.
Hi, I too am sorry that you are going through this tough time. I know that I often tend to blame everything on MS or the side effect of DMT's. I think maybe the neurologist is suggesting to make sure nothing else is going on with you. I am always referred to another specialist in whatever particular area I am having issues. As it turns out I have an adrenal tumor that has been causing problems. Never would have I suspected such a thing. Keep track of symptoms and what might be triggering them. Seek other professionals. The funny thing is with me, my neurologist believed me but not that it was MS. My problem was getting the other docs to believe me and figure out the problem, YOU ARE NOT CRAZY OR MAKING THINGS UP! Keep pushing ahead and take one day at a time. Good luck and if you feel like your neuro is not compatible with you get another. We pay them for services so we can fire them if it's not to our liking.
Thank you for your reply and advice. I am in a position right now where I don't yet have answers for some of what is going on. When I don't know, it creates uneasiness and I then try hunting for answers, but I do talk with my doctors. My pain specialist and primary have been great. If I think I need a test or a referral, I ask and they often agree and get it done. O have some others that I just see for monitoring, and they can often be helpful, even if they are not the ones treating the other issues I have. The upsetting part is the neurologists I have had. I have never had an issue with being taken seriously with most of my other providers, the neurologists have been the more difficult ones to get my concerns addressed.
Have you been tested for neuromyelitis optica? It is one of the MS mimics and can cause quite a few symptoms similar to those you have.
I hate that you are not being heard. Have you outright told the doctor that he makes you feel that way?
Please try to relax. Stress can do horrible things to your body.
Good luck.
I'm so sorry for what you're going through. I'm praying you feel better.
Leslie
I am very sorry that you are experiencing this issue. One thing I have learned is that not every symptom is related to ms. I’m very careful to avoid associating everything with it. For me, this has helped a lot! I have come to realize that I have back issues which are not related to ms, but my primary care doctor wanted to assume they were. Thankfully I pushed on and got some solid answers from my pain doctor. I’m hoping that you will find answers and relief! 🤗
Thanks. I have to say that my pain doctor has been more helpful than the neuro at times. He really tries to figure out what problem is present, not assuming the cause until he can say with more certainty what the cause is. Sometimes the cause could be more than 1 condition, sometimes not.
I'm sorry for your troubles and I hope everything gets straightened out
I'm sorry for your troubles and I hope everything gets straightened out
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