Having been involved in researching the opinions and experiences of People with Multiple Sclerosis for some years now I have been surprised by the different statistics available. Especially as to how many people suffer from the various sub categories of multiple sclerosis.Also how many people actually have been told that what sort of MS they have.
The aim of this blog is to find out what our readers have been diagnosed with over the years.
It would be great if you could take the poll below and let us know which type of multiple sclerosis you or your loved one have been diagnosed with.
Please use the comments box to share any information you think may be of interest such as change of diagnosis.
To collect as much information as possible it would be great if you could share this poll with everyone you know in the MS community.
Many thanks in advance!
HeatherServais @garyslatter45 like just sucks sometimes. you are not alone
I was diagnosed in Feb ’13 after waking up paralyzed on my right side…2 months after my son was born. I only found out I have tumefactive MS just recently because my neuro told me nothing. The tumefactive lesion was 4cm which caused the right sided paralysis.. Plus I had a few other “normal” lesions. It took about 2 months to recover and pick up my baby finally! Since my last MRI a few month ago, the tumefactive lesion has shrunk but I still have permanent symptoms like numbness and weakness. I also have 3 new lesions. I refused medications because I was and still am breastfeeding and trying to conceive. I will never take steroids or DMDs anyway. I would like to try LDN though. It’s just trying to find a doctor to prescribe it!
Dx PPMS just 5 years ago, things have progressed much more quickly than I ever imagined. Already wheel-chair bound, barely able to stand for transfers, and needing help with almost all simple tasks. It seems like there are sooo many more with RRMS who have meds available to help them. Their symptom descriptions are so different it doesn’t even sound like the same disease!
JanMcHugh
My syptoms wer diagnosed as crion, which they reconed was Chronic reoccurring idiocyncratic optic Neuitos that was 1997, then an inlarged vertabre in my spine was the reason they gave that was in 2004, my hearing went intemitantly just afrter a fall and the fall was blamed n 2007, 2009 I paid to see the right doctor in spire hosp due to having mobility problems, he then refered me to himself the next day in normal hospital and the diagnosis of spms was then made
were your symptoms misdiagnosed like mine for nearly 20 years. First symptom facial pain and paralysis. Diagnosed as Bells Palsy. followed by several problems with balance and loss of movement on left side which I was x rayed for. Said it was nerves in back which were disrupted during Child Birth and will right themselves.
I have had MS since 1987 but was never diagnosed until 2009 it was eventually diagnosed as spms
I have had MS since 1976. That is 38 years most of which time I have had relapse/remitting MS but last week my neurologist confirmed it is now moved on to Secondary Progressive MS.
Optical neuritis lead to an MRI and today, I was officially diagnosed with MS. I was given 3 drugs to research. Tecfidera, Avonex and Rebif. I would like to hear of good and bad experiences with any of these drugs, I’m having a hard time getting facts about them. They all seem hard on the body as well.
I also came across LDN (low dose Naltrexone) its not an approved drug for MS but an “alternative med” I have read wonderful things about it, its safer and has little to no side effects. .Has anyone done any research on or tried LDN??
round2it I had a similar situation. Optical neuritis leading to an mri leading to a MS diagnosis as of today.
I was given 3 drugs to research Tecfidera, Avonex and Rebif. I researched them and am unsure. None of them seem easy on my body. Then I came across something called LDN (low dose naltrexone) It seems a better option for me. Have a look and please share your experience with any meds you go on.
i recently had an MRI done and they saidit is consistent with MS, now im anxiously waiting to see a neurologist and im scared…. im only 25 and i have a daughter………why me?
Its interesting reading about peoples mental health as I struggle with my moods. Im on anti depressants Citalopram 20mg wondering if you or anyone you know can relate?
I wish I know what type I have. I was just diognosed in March. Years of symptoms not knowing what the cause was. After MRI during hospital stay repeat MRI two months later and spinal tap dr said ms meds ASAP. No major relaps just pain vision problems confusion and speech problems. Fatigue has been so bad I thought I has the flu for months. Numbness in arms and legs. Never lasting more than few hours at a time. Mostly when u am tired or stressed or in hot weather I can not function. What type do I have? Is it that important that I know. I am still working part time and alway take my meds.
Although I have been diagnosed with secondary progressive MS I have a blood test soon to see if it is actually Coeliac disease (neurological)
my physical health was good when i was diagnosed 3 years ago 2 years into that diagnosis my mental health went, getting treatment for that but doing chores is draining and i can hardly do anything, shoulod have done the physio at the start then i would not be in the situation i am in now
helena24
Don’t be too hard on yourself. The disease causes fatigue. Extreme, for many. Time and the disease cause this. We need to do our best in the present. But don’t beat up yourself. I have had MS a long time. My guess is that it’s the disease. Ask your Dr. to look at some meds that help with MS fatigue.
RRMS over 20 years…I do lot of different sports and feel great… God Bless You All
Diagnosed initially with a stroke, 10 months later after further MRI and lumbar changed to RRMS, never appeared to remit, symptoms increased and one year on re-diagnosed with SPMS taken off Rebif and now have monthly steroid infusions. Rather late in life for diagnosis as I was 52, so luckier than all those poor kids out there struggling with this beast.
Tracey29 I as well was diagnosed with a stroke at 29 and a year later after my mother had a stroke they retested myself and my two brothers and that is when they found that I had MS. Im now 36 and just had my third child a year ago..Felt amazing while I was pregnant but since then things have been getting really weird and scary:( It is so crazy how all of us have MS but each and everyone of us are different… Good Luck to you and May God continue to Bless You
i take steriod pills to keep my left eye sight and movement in my right side of my body and B12 shots
Never heard of anything except the relapsing/remitting, and the primary and secondary progressive……….
in march of 2013 i came down with optic nuritis they said that it is the first signs of MS i took my secind mri about three weeks ago they said i have leagens and that they are getting worse. They told me the Ms is there but is not active yet. They told me if i start on the medicine that i may not be able to work while on it. To wait till it becomes active to start treatment.. I have no family history of Ms. I have noticed alot of problems since the optic nuritis.
round2it sounds like you need to find another doctor..what kind of medicine would they have put you on and not be able to work?
Was RRMS for over 20 years before this past year when my diagnosis was changed to SPMS. Life is different. Now I feel as if I am having just one constant episode with occasional spikes. With RRMS, after a spike you get to be the same old you again until the next episode. That doesn’t happen anymore. I feel like I have lost major parts of me. And that’s not just my thinking either. My family says my personality has changed. – To sum it up … it is pure hell to have something that messes with your brain and you can’t do a damn thing to stop it.
lchaupt it sure does muck with your head, for the past year anda half mental health has went really down
lchaupt hang in there and may God continue to Bless You!!!
I was re-diagnosed the past Wednesday with SPMS…I was able to see all of the images from past MRIs and I definitely saw where it’s all gone so terribly downhill. The only thing is now, I don’t feel any different than I did when I was diagnosed in 2008, so now I’m just wondering…when is it really going to go downhill fast where I’ll really start to feel/see a change? I really hate this stupid disease.
chantaldawn Have you been taking any form of a DMD or??? Did your neuro give you any idea what he/she felt has allowed things to progress to this extent this fast?