Hello
Welcome to the forum. I do hope you can find some help and just empathy here.
I can imagine you are getting prepared to try and wing it without the disease modifying drug you’re on if it’s not doing it’s job.
You perhaps should keep in mind that Ocrevus, together with the other DMDs is designed to reduce the number and severity of relapses. It won’t mend existing nerve damage or completely prevent all symptoms that you’re suffering.
Further to Whammel directing you to the MS Blog, this is what Dr Giovannoni (super MS-ologist) says about going DMD free: MS-Selfie - Risks of no treatment
Obviously it’s your choice as to whether to continue with Ocrevus. If you feel that it’s not working well enough, you could talk to your neurologist about switching to a different (maybe more effective) therapy. You could perhaps phone his/her secretary and ask for a phone appointment with the neurologist?
Otherwise, you may need to get some help with the day to day symptoms you are suffering.
I do feel for you with raging headaches. I’ve had my share of these. Taking aspirin doesn’t sound like it’s taking the buggers seriously. You could ask your GP for Cocodamol, or just a prescription for Codeine, which you can take together with paracetamol to achieve the same effect as Cocodamol. Certainly I’ve always found that’s a better means of ridding yourself of the horrible headaches I’ve suffered.
If you feel the headaches are migraines, you could ask your neurologist for help?
With regard to fatigue, that’s a monster all on its own. Personally I remember figuring out that Modafinil wasn’t working for me. It happened when I unaccountably forgot to take it on a 2 week holiday. I just had a few pills in my handbag. So I eked these out over a few days then found I was feeling no better or worse without them. It’s possible they’re not doing the job for you now either. Severe fatigue that’s not being effectively drugged can on its own cause headaches and probably a worsening of depression or just mood.
You probably do all of this already, but it’s always worth revisiting the management of your fatigue. You could have a go at: https://www.mssociety.org.uk/about-ms/signs-and-symptoms/fatigue/managing-fatigue/online-fatigue-management-course or just reading: Fatigue | MS Trust
If you feel that your mental health is not being effectively managed by your drug treatments, you probably should get some help and advice from the Mental Health team. Perhaps your medication could be changed, or the dosage tinkered with?
Equally, the pain in your legs might be better treated by different medication. If it’s tightness and spasticity that’s causing pain, maybe if you’ve not tried it before, a low dose of Baclofen might help. Or switch from Gabapentin to a different neuropathic pain drug such as Pregabalin might help? Unless you’ve tried either/both before and they don’t help.
Clearly you shouldn’t be changing all your drug treatments at once. Personally, I see the most brilliant neurological rehab specialist who helps with drug treatments and referrals to physiotherapy etc. Maybe if you don’t currently see a physiotherapist, you could ry and get a referral. Maybe even hydrotherapy if that’s available in your area. I used to go to a hydro pool that was lovely, warmer than a swimming pool and the exercises were useful too! Perhaps that’s something you could explore?
I hope some of what I’ve said is useful to you. MS is an absolute git (as I commented to my rehab doctor recently - he agreed!). There are so many dam problems that are just not treated by a disease modifying drug. We have to look at all the ongoing issues in addition to your DMD.
Personally I don’t think that going DMD free is worth the risk. I’ve been unable to take any of the 4 DMDs I’ve tried in my almost 25 years with MS. As a result I’ve had some nasty relapses and am now a full time wheelchair user as well as having pretty bad bowel and bladder problems. (I have a stoma following a colostomy a few years ago, have to do ISC as I can’t empty my bladder at all and am now having to consider an SPC which I don’t really want, but it looks like I’ll have to!)
I really wish I’d been able to take a good DMD. I so wish I wasn’t this bloody disabled. I hope some of what I’ve said is useful to you, or at least gives you some things to think about with regard to your ongoing symptoms.
Please let us know if there’s anything we (ie the forum community as a whole) can do to help.
Sue
Merry Christmas to all 
