Patients Multiple sclerosis
Topic of the discussion
Posted on 7/2/19 4:39 PM
So hi members, I decided to write here after talking with @Lee__R . I am currently not doing good, even dealing with new pains and new symptoms like; joint pains in my wrists and fingers, even pain all through my arms and neck at times. Headaches have returned, still trying to deal with those and a new symptom...nausea?
Not sure if anyone else deals with nausea from any type of motion, wrther it be in a car..pool swimming or anything, but now I am on a medicine called Banophen which is prescribed to me by my neurologist and it makes it so I can tolerate motion but causes me to have crashing fatigue shortly after taking it.
The other problem is I have been dealing with fatigue anyways and also having frequent bathroom visits where I can't seem to empty my bladder each time?? Anyone else going through all this?..
Anyway, I have an appointment on July 24th so will let everyone know then what my Neuro says since he thinks I might have progressed past rrms and I hope not, but the self Rebif injections seem to have stopped working too.
So tired of this..:(
Beginning of the discussion - 7/3/19Not doing so good.. https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/not-doing-so-good-1159
Posted on 7/3/19 3:50 AM
Hi @Emma2190 I am so sorry to hear about this. Is the piercing no longer helping your migraines?
What are you taking to control or manage your pains, especially your joint pains now? What are your doctors thoughts? Are they thinking progressive MS?
I get car sick but only if I am in passenger seat... very strange, but have always experienced this uniquely, so do not attribute it to MS.
The 24th seems far away, but it will be here before you know it!
Posted on 7/3/19 3:51 AM
I hope you can stay positive and try not to worry yourself sick with anxiety and thinking about the possibilities.
Posted on 7/3/19 3:29 PM
@MS_283 The piercing worked for a while but sadly I think if I'm progressing like the doctors think. it's failing now. As for the piercing for anyone who gets it done there is more to the Daith then it just being there, i.e. pulling down on the ring when you are having pains in your head, which is what I do and still try to now.
Yes they do think it has become progressive, but without proper tests likely another MRI since my last one was in 2016, and checking for more lesions their can't be a diagnosis of progressive yet. I do know that the Rebif seems to be failing now after a year and I'm getting tired of injecting myself three times a week anyway. Not only is it a bit painful but it also comes with a lot of side effects.
I'm trying my hardest to stay positive, it's just really hard at this point in my life is all especially trying to find employment and taking care of my kids too with all this going on. I'm not taking any medications for the joint pain or spasticity as of yet. I did take one a long while back that did not agree with me and put me in the ER, so only really doing CBD for pain management and such when I need to, Ibuprofen sometimes but not as much as before after reading the health risks of taking too much or all the time.
Right now it's the humidity that is making things worse, not sure if you know about the negatives that humid or hot weather has on the body when you have MS, but it's not fun and my cooling vest from the ms foundation is not helping since it only lasts about an hour or hour and a half.
Posted on 7/4/19 4:35 AM
@Emma2190 Sorry to hear what you're going through... yes i suffer from nausea as well just like you mentioned, riding in a car, swimming anything will set it off. you're not alone in this.
Posted on 7/4/19 3:34 PM
@looking4 Thank you for telling me, it helps knowing I am not the only one going through the nausea.
Posted on 7/4/19 11:04 PM
@Emma2190 I hope you soon find your answer. I have RRMS, not secondary progressive. Not sure what medications - if any - are different between the stages. you mentioned you are tired of injections, but did you hear about the newer FDA approved medication for MS that can be taken orally? It is called Mavenclad. Some of the risks scare me, but I guess it is something one must weight out the pros and cons of risks and current state of health/well-being.
Have you ever tried Kratom for pain? I would recommend it and would be happy to talk to you more about. You can research about it. If you google Kratom + pain or even Kratom + multiple sclerosis you will find a host of people with great benefits! Here is a blog from someone with MS and Kratom: http://herbotony.blogspot.com/2016/02/my-kratom-experience-using-kratom-to.html and another person with MS and her miracle Kratom https://www.painnewsnetwork.org/stories/2016/9/27/dont-take-away-my-right-to-kratom
Posted on 7/6/19 5:22 AM
@Emma2190 I had horrible vertigo with Rebif. The longer I took it, the worse it got. Maybe that could explain the nausea. It could be that, or you are injecting into scar tissue from previous injections, and are no longer getting the proper dosage you need. Whatever you decide to do, or your doctors decide, make sure you aren't off meds for an extended period of time. My neuro pulled me off my old treatment (Gilenya) be cause my white blood cell count was low, and I've been treatmentless for 3 months now, and have had flare after flare that aren't going away. I've lost feeling in my left arm (my prevailing arm) and my right leg in the past 4 weeks, and they have found new lesions in my brain and spine in that time.
Posted on 7/6/19 7:03 PM
@MS_283 Yes I have heard of it after clicking your links and their trying to make it illegal here, so no I have not tried it as of yet but there are other natural meds like CBD and so on that are legal here at least. @TheMSDad I'm so very sorry to hear of your negatives on Rebif as well and I will try to not be off a med too long for my MS if he does take me off the Rebif. I've actually been without any treatment for a year or longer before the Rebif so I know what you are talking about with the relapses one after another. This is also the first time I have heard from a male having MS, so that also helps to know that it's not stuck on one gender like the old wives tales go.
Do you fall a lot? Experience spasticity in any part of your body and what do you do for it if so? I ask because I deal with it a lot in my left leg and I fell up my stairs recently too right on my wrist. Also I have heard of Gileyna and that it can be dangerous so I haven't tried that med, only been on Aubagio, Copaxone and now Rebif. It feels almost like all the meds fail overtime, I hope not but seems like it.
Hope a cure is found one of these days, but it probably won't be in our time..who knows.
Posted on 7/6/19 9:09 PM
@Emma2190 I am one of the few males.that suffer from MS. I fall A LOT. When I was first diagnosed until they dialed in my anti-spasm meds correctly (currently on Baclofen 10mg 5/day), and now that my right legs has gone numb. After I posted last night, I tried to take a shower and collapsed and had to have my wife help me stand up and help me out of the shower.
The spasms come and go. They used to keep me up all night between my leg and my back causing such intolerable pain that I would wake up with tears in my eyes. Now I am so heavily sedated at night that I can sleep thru most spasms i have, but it has forced my wife and i to sleep in different rooms.
Gilenya is kind of dangerous because it severely lowers tour white blood cell count, making you substantially open to viral infections. With a 5 y/o in pre-K, whenever he came home with the sniffles, i was sure to end up with a full-blown sinus infection, which they eventually pulled me off the drug because of. If you aren't put on something quickly after, it exacerbates your MS. I'm trying to get on Mayzent now for SPMS, but I've been off a treatment for 3 months and I'm losing functions in my limbs week-by-week. No beuno.