Multiple Sclerosis (MS) - please introduce yourself

Hello @chris462, Welcome to Connect. I'm hoping other members in this discussion with experience using low dose naltrexone (LDN) for MS can share their experience with you. Here are a few articles on MS and LDN.

-- Low-Dose Naltrexone | National Multiple Sclerosis Society: https://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Low-Dose-Naltrexone
-- Can Low-dose Naltrexone Help with MS?: https://www.healthline.com/health/naltrexone-for-MS
-- Can naltrexone help with multiple sclerosis (MS)?: https://www.medicalnewstoday.com/articles/325455

Have you discussed using LDN as a treatment with your doctor?

My neurologist said would not prescribed. Not enough testing. Not a cure for MS.
The DMT (disease modifying therapies) are not a cure either, but if a drug can help your quality of life it's worth a try. I have read they have have a lot of success with LDN. After dealing with MS for 21 years I think it's worth a shot very few side effects. Less than the current DMT I'm on.

My name is Helen and I was diagnosed with RRMS in 1996. Six years ago, I progressed to SPMS. Within the last nine months, my legs have gone from great to terrible. I'm scared of losing the use of my legs. I'm hoping for an appointment at Mayo Clinic to see if there is anything that can be done to help me. I've had serious reactions to all the medications I've tried, so I'm not taking any medication. I'm frustrated and scared. Fingers crossed for an appointment sometime soon.

In the beginning have seen a ent dr.to determine balance.not the case.went to my neurologist to determine dizziness and loss of balance for a long time!! The latest i went to a otolaryngology.she says you hearing loss in the right ear and left ear.A VNG report is abnormal.square wave nystagmus and significant anisotropic positional nostalgia suggests CMS involment.I do have MS,but they say no connection.this has been going on for years! I might note lying down after dizziness it does subside but the next day might get it again. This condition i have is so sporadic,I might not get it again without warning,please help!!!!!!

Hi @kip170 welcome to Mayo Clinic Connect! I am sorry to hear that you are having so many different symptoms. You'll notice I moved your post to a discussion about MS to connect you with other members to determine if there is any correlation between your MS and symptoms you are experiencing.
I'd like to invite @helenlodahl, @chris462, and @laurieb63 back to the conversation.

You might be interested in this article that explains some similar problems.
"Many people with MS experience episodes of dizziness, lightheadedness, vertigo, or feeling off-balance. Find out what causes the sensation and what you can ..." -- Dizziness and Vertigo in Multiple Sclerosis: https://www.healthline.com/health/multiple-sclerosis/dizziness-vertigo

@kip170 How long have you had MS?

I was diagnosed 24 years ago. My MS has been fairly mild up until 6 years ago and then all hell broke loose. My neurologist thinks I'm in the secondary progressive phase of my disease. I have an appointment on July 6th in Scottsdale with the Mayo Clinic. I'm hoping Dr. Wingerchuk can shed some light on my situation and help me get back to being able to walk without problems and being able to do yoga. Thank you for moving my post to the correct location. 🙂

I'M KC

I'M NOT YELLING I'M TYPING IN ALL CAPS TO SEE BETTER.

HERE IS MY BRIEF JOURNEY TO DIAGNOSIS- OPTIC NEURITIS AT 22 YRS, MENIERE'S DISEASE/HEARING LOSS 34 YRS
SEVERE BALANCE ISSUES WITH VERTIGO 44YRS, DIAGNOSED MULTIPLE SCLEROSIS AGE 44 - 2007- 20 YEARS AFTER FIRST SYMPTOM

I HAVE TAKEN COPAXONE, AVONEX AND NOW GILENYA- FAILED THE FIRST TWO AND AM STILL ON GILENYA SINCE 2011.
NO NEW LESIONS SINCE GILENYA BUT STILL FEEL LIKE I'M GOING DOWNHILL. I TAKE OTHER MEDS FOR SPASTICITY, BALANCE, AND NERVE PAIN.
I CAN WALK MOST OF THE TIME BUT NEVER FAST AND NOT ALL OF THE TIME, CAN SEE WELL ENOUGH TO USE THE COMPUTER MOST OF THE TIME BUT NOT ALL OF THE TIME, CAN HOLD A CONVERSATION MOST OF THE TIME BUT NOT ALL OF THE TIME, ETC.

I HAVE BEEN TOLD THIS DISEASE BURNS ITSELF OUT SOMEWHAT AS A PERSON AGES. I WONDER IF THAT IS TRUE. I'M FRIGHTENED TO TAKE THESE MEDS FOREVER DUE TO OTHER THINGS THAT START BECOMING MORE COMMON AS A PERSON AGES LIKE CANCER, INFECTIONS, AND JUST A WEAKER IMMUNE SYSTEM IN GENERAL DUE TO AGE. WILL MY BODY BE ABLE TO FIGHT THESE OFF WHILE TAKING A DISEASE-MODIFYING DRUG? I DON'T THINK THERE IS AN ANSWER.

WHAT A JOURNEY BUT AT LEAST I'M HERE TO TAKE IT.

I was diagnosed with Meniere's Disease 10 years before my MS diagnosis. My symptoms were vertigo and hearing loss one-sided that fluctuated. They say MS probably doesn't have anything to do with my Meniere's. I don't know if I believe that. Vertigo is so hard to deal with. I take meclizine for vertigo. Have they talked about Meniere's or benign positional vertigo? I'm sorry you are going through this.

Hello. I was diagnosed with MS in 1999. I am now 70 yrs old. Up until August 2021 I was doing Copaxone injections (20 years). After all this time I've been doing very well, my doctor is amazed and pleased. I am one of the lucky ones I guess. I am now off MS injections and still doing well. In 2018 I was diagnosed with Parkinson's. So far the only visible symptom I have is a resting tremor in my left hand, very annoying. I am taking carbidopa/levodopa 3 times a day for that. A big thing that worries me is the possibility of developing dementia, as I am already forgetful about stuff. Even though I know that's normal for my age, it still worries me. So once in a while I do some online cognitive tests to help me feel better.

I an 56 year old female. I was diagnosed in 1995 with PPMS. My symptoms at onset were bladder/bowels disfunction, right foot drop, rigidity, spasms, numbness on right side, heat intolerance, depth perception issues, periodically alopecia areata. The past 27 years have been a progression of the same symptoms. In the past year and a half however, things have dramatically changed. I developed bradycardia with no other heart issues, tightness across the chest (MS hug ?), body temperature very seldom 98 degrees (typically between 96.7 and 97.), migraines, dizzy every time I lay flat or get up out of bed. I can walk around without issue but when I stand in one place to do dishes, I get tightness in chest, palpitations, hot feeling, sweaty clammy, if I stand long enough I get vertigo and one time I lost consciousness. The fatigue is now sometimes so extreme. I have been to cardiology and my neurologist. My next appointment is with endocrinology. So far, it is appearing to be MSA. I am devastated and terrified. Is there anyone else experiencing this too?