I'm New Here, But Not to MS: I am a 5... - My MSAA Community

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I'm New Here, But Not to MS


I am a 59 year old, diagnosed with MS in August 2014, but now have realized that symptoms have been there since the 90's. My 5 year-older brother also has MS and my 2 year older brother has CMT, which is related. I had thoroughly researched MS when my brother was diagnosed, so I already knew a lot about it when I was diagnosed.

I have chosen the option of no medication treatment. I take a lot of herbals that were recommended for MS. However, I also have a ruptured disc in my back, bulging discs in my neck, GERD, IBS, left ventricle diastolic dysfunction, and had Lyme Disease. I was just diagnosed with cataracts and glaucoma, and have nerve damage in the left eye confirmed.

My left side is the most affected by the MS. I have no muscle tone left on that side, as well as vision and hearing changes on the left side. The brain seems to be most affected. My memory is now very poor when it use to be excellent. I had a genius level IQ, but now feel like an idiot much of the time. Headaches are more frequent, lots of eye, vision, balance and cognitive are increasing.

I get cramps in my legs and feet a lot now. I know that MS effects everyone differently, but I would love to share and hear from others who experience the same major symptoms that I do. The first symptom to really make me wonder if I had MS, was difficulty retaining my balance. I fell a few times, sometimes just getting dressed. I now have to sit down to put on pants, shorts, underwear, etc.

Thanks in advance to anyone who cares to respond.

27 Replies

Hi RemLind and welcome!😊 Sounds like you have been through the gauntlet a time or two. I'm so sorry. I have problems with leg cramps and rls. I'm hoping the last rounds of steroids might take care of it.

We have a couple people here that have chosen no dmt. I just can't remember who they are. Ugh 😅 I'm sure they will show up soon.

Jes 🌠

I began symptoms (left side numbness and pain, from head to toes, droopy left side of face) in July 1977. Over the years the left side stuff has persisted (except the droopy face) and added, feeling wet on left buttock, feeling of water dripping down left leg, fatigue, blurry vision and lately muscle cramps all over (I am sure that I have forgotten some things).

I have never taken DMT's but I have been lucky, I guess. Not sure what I would do if I lost vision or the ability to walk. Guess that I have been lucky. We can only hope that continues RemLind .

Welcome to the chat group but not to MS.

RemLind in reply to Morllyn

I use to feel like someone poured warm water in my ear on one side. Now I feel bugs biting me and there are none, or feel one walking on me that isn't there. Not a major problem, but sure is nerve racking!

bavery207 in reply to Morllyn

Morllyn thank you so much for mentioning that one side of your face is droopy. I have noticed that very thing recently and was worried about a stroke on top of my MS. I will still mention this to my Dr. but I feel much better knowing some one else is experiencing the same thing!

52mags in reply to Morllyn

Hi morliyn you lost me on that one although I did not like taking the baclofen I think over the last 30 years if I had not got it I would probably have jumped off a bridge or something I can put up with most pain but that is one I am not prepared too your strong 💪

RemLind welcome. I was diagnosed nearly 7 years ago, I am 61, live in the uk, I have PPMS, never been offered any treatment. Like Jesmcd2 i too have Rls, apparently they are related. I have balance issues, fatigued, weakness in my right side, headaches, the list continues, but I have my faith, this site and a supportive family. I like to laugh, smile and I know I have to fight. So be encouraged that you are not alone in this strange adventure that all of us on here encounter everyday. We can all relate to each other, blessings Jimeka 🦋 🌈 👋

I am 58 and was diagnosed in August of 2014 also.I had symptoms for several years but didn't make any connection until I couldn't hardly walk. My doctor said you have some bulging disc's and sent me to physical therapy. It didn't help and the therapist said there is more going on. I was glad someone was finally listening. Then I was sent to a neurologist. He didn't think I had MS either,because I had no vision problems, until he finally did the spinal tap. I knew before him. I have had no vision problems but my problems are on the left side. I drag my left leg and can't lift it at all. I have to use a walker now or a wheelchair if it involves very much walking. I have trouble doing anything because I get so weak so quickly. I am taking Copaxone but I am still getting worse. Now my right leg is being affected. My balance is really bad and I have fallen several times. What herbs are you taking? I would like to know. Maybe it would help me. Anything is worth trying. I have bladder and colon issues but have learned what to do for that. Other than MS I have always been pretty healthy. This has been a real adjustment for me and my husband. My legs and arms/hands as well as energy are my biggest problems. I am starting to have slight problems with my memory or cognition. I ask my doctor about steroids but all he said was it won't helpbut didn't say why.I asked what type of MS I had but he said doesn't matter all MS. It is very frustrating.

RemLind in reply to cljones

I was told the same thing about the type of MS. I talked to my older brother (with MS) and he said any neurologist that would tell you that isn't worth a piece ...... You get the point!?

cljones in reply to RemLind

Yes I do. At a local support meeting a doctor said the reason he probably didn't want to say is because if they tell you it is progressive then the insurance might refuse to pay for my medication since there isn't any for primary progressive, which is what I think mine is.

RemLind in reply to cljones

I take flax oil, ginger root, turmeric, magnesium, potassium, cranberry, B12, D3, biotin, folic acid, gelatin, a probiotic, and a multi vitamin/mineral. Not all of those are necessarily for the MS, and there are more for MS I don't take. Here's a link for a list of MS herbals: healthline.com/health/multi...

cljones in reply to RemLind

Thanks I do take some of these but I will check these out. Thanks

pmbevac in reply to RemLind

HI Remlind & welcome to the group. Thanks for the link! If I were to take half of those supplements it would be a meal in itself!

jackiesj in reply to pmbevac

so what is ratio of food to supplement?

pmbevac in reply to jackiesj

Depends on how many calories are in the supplements...

jackiesj in reply to cljones

cjones I am so sorry some of these docs are like this.I have 2 cousins one has passed, same MRI and docs don't believe it.When off my estrogen it goes downhill quick and a new med in development for men and woman with estrogen is in research.It is frustraiting when the doc acts like....oh well.... but I think many just don't know what to do.....best wishes.


I'll add another welcome to this great site!

Welcome. Sorry you are here becauze of Ms but being you do we are glad you found us. I sure understand your balance problems. I have o sit down to dress myself or pick myself up out of the floor. If a police officer wanted me to walk a straight line id be in jail. From the picture I take it you are a NASCAR fan.a Kasey Kane fan is see. Im a NASCAR. Fan from way back. My garage is covered in Dale Earnhardt memorabilia. God bless.


Doubled51 in reply to Doubled51

Earnhardt senior stuff that is. But Im a Dale Jr fan to.

RemLind in reply to Doubled51

Carl Edwards was my favorite, Kasey second, mostly because my daughter named her son Kahne after him. lol A couple years ago we drove from DFW to SE Nebraska. Coming home I had a guy who was following right with me. (I drive kinda fast ;) When I stopped for gas, so did he. We introduced ourselves and I told him I was named after my father, Dale. We took care of our business and when we were ready to go he came over and said to me, "You said your father's name is Dale, that isn't Dale Earnhardt is it?" lol Nice to "meet" you.

Doubled51 in reply to RemLind

Awesome. We just moved a little over 3 weeks ago and of course now that I'm not able to build and work on cars due to ms I finally get the garage I've always wanted. Even though I can't do much I can still deck it out with all my Earnhardt stuff. I've got walls covered in pictures and shelves covered in #3 models. I spent the time I was energetic enough this afternoon putting all my magazines mainly of his accident and death in weather and dust proof bags getting them ready to display around the walls. Haha. I might not be able to build the fast cars I did but I don't have to forget many of the best times of my life. Lol. Good luck with our common affliction. God bless.


Doubled51 in reply to Doubled51

And yes. Carl was a class act. I hated to see him go without a championship but I respect him for the decision he made walking out healthy and rich.


I pray you have the strength to keep fighting. I don't know how I could manage without baclofen for my spasms. Some yoga poses seem to help maintain balance problems.

RemLind in reply to Yooper

All prayers are welcome! I have so many problems with medications and allergies, I'd rather do holistic than drugs. I also know that part of my balance problems are because I usually only eat one meal a day. When I wait until 7pm or later to eat, the blood sugar gets low and dizziness and balance get worse. All prayers are welcomed.

cljones in reply to Yooper

I just started taking that it has only been a week so I am still adjusting to it.

Welcome.I don't take an MS Med and just as I thought more on it its a possible on the JC virus.Over all that may be the one making all this worse.Not being able to have a choice on meds now tips on symptoms that help ME.Each different and ive tried a lot.I need a scooter and my husband refuses to look. will do a post on what helps....hopefully others can also.We understand what works for some wont work for another possibly.

Welcome!Sadly I say this because each day there are many new diagnosed.It is hard to know what we use to do and now can do but grateful we do at all.Each day seems to change my symptoms but the legs cramps sometimes curl of feet weakness memory are pieces of a puzzle for me.Each day I fit a new piece of the puzzle and try to have it work for me.It doesn't always work but I feel at least I'm doing something with MS it isn't doing it with me.I am not on MS regime but pain spasms etc.I suggest everyone ask about the JC virus associate with MS.I do find that makes a difference.Best wishes and a true welcome!

Welcome aboard!

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