Diagnosed in September 2014 (2 years ago). Following DMT therapy with Copaxone (20 mg injection on a daily basis). My symptoms (fatigue, foot drop, balance problems) and MRI (only 2 lessions in the spine - brain is clear) show it is MS, but I am not 100% sure if it is so, or if it is a MS mimic desease.
I am looking for additional tests to verify if it RRMS (as my neurologist insists).
I have similar symptoms, and similar dx brain being clear but have a few lesions, but Ive had 2 attacks 7 years apart. The other thing besides MRI, is to look at your CSF panel an how much banding/ antibodies exist in your cerebral spinal fluid. That can be a big tell. I've also read in the literature that there are microlesions that they can't image with MRI, that are beginning to tell a clearer story of MS-research in progress.
I think it is always good to get a second opinion, which I'm working on now. The group here suggested finding a neurologist at a MS center, which is who I am following up with.
Best wishes to you, DeeAma
Hi DeeAma
Thanks for your email. Yes I have tested my CSF. There were about 10 oligoclonal bands in the fluid. I suppose this means inflammation in spinal cord. The microlesions issue is very interesting. Do you know any internet page on that.
Best regards
Manos
ncbi.nlm.nih.gov/pmc/articl...
One article about these microlesions: "Cerebral Microinfarcts: The Invisible Lesions" published in the: Lancet Neurol. 2012 March ; 11(3): 272–282. doi:10.1016/S1474-4422(11)70307-6.
Have you had a Spinal tap? I was diagnosed in March 2015 after my Dr recommended me to a neurologist due to extreme fatigue and full left side numbness. It started just with my foot and my Dr thought it was from my back surgery I had in December 2011. When the numbness and tingling kept creeping up my Dr knew it wasn't my back. I had a brain MRI which showed lesions and a Spinal tap with a ton of blood work which showed the ms profile. I have since learned that the mri only catches a certain part of the brain matter, but lesions can be on the other part (can't remember if it's grey matter or white matter). I didn't have an mri of my spine with contrast to see if there are lesions there too. I tried Copaxone 3 times a week for 6 months but ended up with welts, bruising, and extremely painful. Tried gilenya but was put in the hospital from elevated liver enzymes and elevated lipase levels (pancreas levels). I am now on tecfidera. I'm on my 2nd week and have only had side effects twice. Good luck and I would get a second opinion especially if the dr doesn't do a Spinal tap before officially diagnosing you. Good luck
Hi all, have been attending educational seminars on MS. 2 nights ago ms neurologist at Scripps La Jolla here in So Calif advised SPINAL TAP no longer used to determine MS.
Wishing u well.
My neuro wanted to do a spinal tap but I totally refused. I am terrified to have anything touch my brain or spinal cord.
Hi
Thanks for your email. Yes I have tested my CSF. There were about 10 oligoclonal bands in the fluid. I suppose this means inflammation in spinal cord.
Good lack with the selection of the right medication
Manos
Actually, at the Consortium of MS Centers each of the last two years there were presenters that urged practitioners to return to the basics such as spinal tap to determine if relapsing (inflammatory) form of MS or progressive. It appears that even in folks who think they have progressive forms of MS may have elevated IGg levels and O-bands in spinal fluid indicating that myelin is being destroyed and there is an active disease process going on. Other tests used to rule out MS would include evoked potentials (visual , auditory or brain stem, sensatomatory) and EMG.
One other thing I would like to propose is that the early introduction of a DMT (Disease Modifying Therapy) such as Copaxone could have quieted the MS so that there were no enhancing (active) lesions on this MRI
Hi SherieMSCN
Thank you for your msg.
In my case, the spinal fluid showed oligoclonal bands and there were two lessions in spinal cord on the MRIs.
Since the CENTRAL nerve has problems is there any reason to check for perpheral nerves problems with an EMG test?
Manos
Your doing great! Keep up the the good work and hope,with gods help and friends support every day you'll be thankful for all that you have
My neurologist ordered a spinal tap to confirm his suspicions from the MRIs. He didn't want to put me on a DMT w/o that confirmation. I recently switched to a new neurologist who specializes in the treatment of MS and he ran blood work to rule out Lyme disease, which was negative. I was diagnosed 2-1/2 years ago and have been using the Avonex pen once a week with great results. The side effects are pretty unpleasant, but I've learned how to avoid those or at least minimize them. I'd say it's working really well for me as I've only had 2 relapses, both brought on by stress, and the latest MRI revealed no new or active lesions. I wish you well in finding the right treatment.
Welcome, Manos. Make sure that you get tested for NMO, given that your lesions are on your cord and your brain is clear. I have lesions in both places, but more in my cord.
Manos From all you have posted, it sounds like you do have MS and that it was caught early and has been kept in check with the Copaxone. You are very fortunate. At this stage of MS many folks question whether or not they actually have the disease as between relapses they feel so good and quite normal. It is, however, essential that you stay the course with your medication to avoid more flares and a ramping up of disease activity. Without medication, damage can happen without you knowing it so you are doing the right thing staying with meds.
CherieMSCN Thank you Cherie for your advise, that I actually follow already (continue Copaxone DMT therapy), but I am continuasly looking for possible missdiagnosis, since fortunately up to now I have never had even a CIS (isolated syndrome).
On the other hand the forum is full of wrong diagnosis events of many people.
I would recommend a new book published in May 2016 : Common Pitfalls in Multiple Sclerosis and CNS Demyelinating Diseases, by B. Mark Keegan. See bit.ly/2cYViyL
Anyway many thanks for your encouraging email.
Manos
Tips on living with MS
Living with MS is hard...
Working with MS
Daily life living with MS
Dealing with MS for 25+ years
