Multiple Sclerosis (MS) Support Group

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AggieSort 08/29/2016

Hello, I am a 38 year old woman who has been struggling with fatigue and odd physical sensations- like burning and heat in my left thigh, and numbness and weakness in my right arm and leg. I also sometimes get a weird, uncomfortable ticking sensation in my mid-stomach.

I am awaiting an MRI, but have heard that a MS diagnosis can sometimes take years. My bloodwork all looks great-i am very healthy aside from this constant fatigue and odd physical sensations.

I am just wondering... for people who have MS diagnosis- is medication something that you always have to be on or is it something that you take only during a flare up? Also if my MRI comes back normal what other things should I be asking my doctor and or neurologist about? Thanks for any advice and or support you can offer... The only other things that make me worry about Ms is that I have a cousin who has it and I had Mono as a teenager and I've heard that sometimes that tends to increase the risk of developing Ms as an adult although I'm not sure if there's any truth to that. I also have had a terrible tolerance to heat.

MsRee 08/30/2016

Sorry you are awaiting answers. Normally after the MRI results are in and your Dr believes it's MS they will follow up with a lumbar puncture and did he check your Vitamin D level? Low vitamin d levels seem to be the common denominator in us. The meds are to help slow the progression down so yes you will forever be on meds although there are a few people who say changing eating habits has proven to help stay off the drugs so it really depends on you as an individual. Best of luck in getting answers soon.

sexysub56 09/01/2016

Sorry for this answer, but MS is forever. And your symptoms are MS symptoms. Ask your neurologist. They are way more qualified than anyone else to diagnose MS and answer questions about neurological questions. So you'll need to be on drugs forever.

Anne8 09/02/2016

Where to start. . .I starting noticing weakness on one side etc right around your age, which is the age range to start noticing your symptoms if you have primary progressive (PPMS) and haven't had a sudden episode like optic neuritis (RRMS people often find out they have it bec of this, it's a sudden problem with your sight). I got diagnosed pretty quickly (within a year) bec I had many 'black holes'- which basically are little black spots on the MRI, scar tissue. Yes, mono def figures into it, although apparently 95% of the population gets exposed to mono (evidenced in antibodies present in the blood). I happened to have a pretty bad case of mono in my 20s. If they decide you have a progressive form (like me) your life-long drug treatment will mostly be muscle relaxants. If RRMS more aggressive, expensive treatments. Pharmaceutical companies LOVE diseases like this one, chronic & presently uncurable! If you aren't on good insurance & are in the US, make sure you get a good plan!
Vit D levels seem to factor in too! I'm from a northern state & there are more cases in places with fewer hours of daylight.

dukelady38 11/26/2016

Just wanted to post in support because I have a similar situation - 38 and having tingling/burning down my neck back and legs - gets worse with exercise and heat - I had an incident of optic neuritis about 10 years ago along with some severe abdominal pain that doctors though was a bad reaction to an antibiotic. I had white spots in my brain then, but have been fine since then with the exception of some tingling when walking after each of my kids were born. This recent bout was worse though, plus fatigue and some other things, so I had MRIs and now have spots on my cervical spine, thoracic spine, and brain - having a spinal tap this week. My neurologist wasn't sure that it's MS (he didn't have the thorasici MRI at the time) and said it's not following the typical relapsing remitting pattern. But he took a lot of blood last time and further tests should help. Kind of up in the air right now which is tough. Don't know what to do it expect! Best of luck to you

GreenPureHealth 12/05/2016

Hello -- I can imagine how scared you must feel! I'm sorry you are experiencing this, but it sounds very similar to my introduction to MS. My first neurologist was a terrible experience - she had me running 180 degrees in the opposite direction of medication. I have been navigating through my MS journey for nearly 20 years now with nutrition as my road map to health. Have you read the book Curing the Incurable by J. Riggs? It was my light and hope during my darkest days. Because of that book I learned what my triggers are and today I am living medication-free. My every-other year MRIs show no new lesions - nutrition has literally saved my life! Are you open to trying what I did to see if your body responds well? To learn what is triggering your exacerbations? I know each of us is different and none of our MS struggles are identical, but I truly believe that the foods we eat can hurt or heal our bodies. I do wish goodness and strength for you. x
(If you want to talk, you can find me on facebook @ GreenPureHealth and we can chat more there.)

dxat59 12/06/2016

By the time I finally got a diagnosis, after a really bad flare, they said I must have had MS for almost 40 years. After being on the daily injections for almost 3 years, I opted to discontinue them and try the Wahl's Protocol diet for MS. I feel so much better, have more energy, strength and rarely if any symptoms. My last MRI showed no signs of MS. If I hadn't taken proof of my diagnosis, they would never have known I have it.

Gentle hugs, Linda

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