Does RRMS always progress to SPMS?

[bornworrier]

I was just wondering if it is at all possible to have a mild case of MS throughout one's lifetime?  I have had mild MS-like symptoms for 22 years now, without any major attacks..and symptoms which include bladder issues (frequency and feeling like I always have to go --this waxes and wanes,

sensory sensations-tingling, burning, very little numbness, pricking, feeling of liquid dripping under skin, vision issues (may have had optic neuritis right after I had the chicken pox), also some other minor vison issues like tons of floaters, weird distortions upon waking from deep sleep (goes away very quickly),

when cold fingers get a little numb quickly, same as with thighs, and when out in the cold i have pain in inner ear,

sometimes cant recall words, but this doesnt happen too often, no sexual desire.

I have not been diagnosed.  Last MRI's were 4 years ago of brain and C_spine and they were normal.  Is it possible to have normal brain and C-spine MRi's after having MS symptoms for 18 years? I also had normal MRI's years ago of brain and T-spine and normal spinal tap.

I believe I have MS because what else could it be after all these years?  All symptoms are MS symptoms, I am lucky they have all been mild.  The worst being the bladder.  It was my first symptom.    I have never had any problems walking, I can still work out fine at the gym doing strength training and eliptical machine.  My biceps and hamstrings seem like they may be somewhat weak as I am doing the exercises.

I am doing the OMS diet---Dr. George Jenelik.  If you would like to check it out the website is www.overcomingmultiplesclerosis.org.  I believe in this diet.  George JEnelik has MS, his mother had it too, and he has gone through all of the medical research and ;literature has come up with this diet plan-or lifestyle change that worked for him.  He has been on it for 10 years with no more progression and no symptoms of MS!!  There is proof in the works of Dr. Swank that a diet low in saturated fat works to stop the progression of MS.  

Anyway,  what I have found about the progression of RRMS is that it usually does progress to SPMS.  Does anyone have anymore information on this?  

Thanks for your help and taking the time to read my post.  

[bornworrier]

Im with you./..thats exactly what we need..stories of hope.. maybe I should start a thread about that...no negativity allowed!!

[bornworrier]

Just one thing I wanted to say about Julies comments.

Jenelik updated Swanks diet.  Swank died before alot of new research came out...i.e., how Omega-3's are important to MS patients, etc.  So the basics are much the same as Swank...and now it is even better so there is more of a chance of doing well while following it.  Oh, Dr. Swanks findings were published in a very prestigious medical publication....not sure off the top of my head what it was...maybe the lancelot..???

Also, Jenelik says that there is alot of evidence in the medical literature that lifestyle changes can modify the course of the disease.  I think that is very believable...
There are diets that help cancer...and look what diet did for President Clinton?? (no meat, no dairy, mind you...)  He is not promoting miracles here...just taking what has already been shown in scientific studies, put it all together and developed this program.

He also does MS retreats for patients in Australia. He is a very well respected Dr. there.  He has been on tv, and quoted in many publications.

I am just looking for hope here...hope that in 10, 20 years from now...Ill still be ok...thats it..bottom line...i just want to be ok.  Like all of us do. And now I have found something that may do just that.....enable me to be ok years from now...

[Tingles29]

I'm pretty sure the people that reversed their condition isn't losing sleep on if anyone believes that a diet can help.  All the research in the world don't mean much of anything to me.  If it did I would have never seen a holistic doctor and been HEALED from years of misery and pain with EBV.  If I listened and drawn conclusions from research then I would have just had to live with the symptons and the chronic fatigue that the medical doctors told me to get used to.  Bob maybe it's all coincidences that the people that feel better just so happened to be faithful to the diet or maybe it was GOD.  What's the research say about prayer healing disease? I'm pretty sure medical publications don't say that miracles happen through the healing power of God either but I certaintly believe they do.  So am I supposed to believe and listen to everything the doctors say?  If people want to beleive and have hope of slowing down progression or even reversing it then more power to them.  Alot of the stories I've heard of success, the people weren't even selling anything. So not everyone is selling scams out there. Some just want to share their experiences.   Just because it's 2011 and their is no scientific data in the" precious" medical journals that correlate any improvements between diet and disease doesn't necessarily mean that's the truth. I'm stepping away for some time because reading these pessimistic comments aren't helping me out at all and just stressing me out.  I need stories of hope! Good luck everyone!

[jujuminx]

Yes, feels like liquid dropping on my skin.  Always fools me and I look down.

I had lower left side abdominal discomfort on and off for about a year before dx.  Lots of tests run (CAT scans, colonoscopy, etc) with nothing found.  Have small cysts on both ovaries so they are thinking that it was from that.  Unfortunately my GP gave me Leviquin antibiotic when she thought perhaps it was an intestinal infection. Leviquin is NOT recommended for people with autoimmune diseases. I stopped taking it when I started to have tendon pain.  I am thinking maybe the discomfort is MS related?  Have to be careful about assuming all aches and pains are MS related but should also look at the possibility. Haven't had the discomfort in a several months so I am not pursuing it any further at the moment.

My doctor doesn't believe that there are mild cases of MS, just slower progressing ones than others.  He thinks I have a slower progressing one but he also said that only time will tell if that is true or not. He was very, very optimistic and said there wasn't any reason for me not to be as well.

I asked him about diet when first dx.  He said nothing definitive and left it up to me to decide if I wanted to follow a certain way of eating.  He did recommend that I stay away from sites that offer MS cures but gave me a lot of literature on official MS sites. Says there is a lot of misinformation and it would serve me well to not get caught up in it.

I am sure you know that Dr McDougall's diet is different from Dr Swanks? And Dr Jenelik's diet is yet again different from McDougalls and Dr Swanks? McDougall actually claims that diet can cure MS. To me this is a huge red flag on so many levels. Doesn't it set off any alarms for you? Can't tell you how many times I have heard the line that something is a cure but the big drug companies don't want the word to get out due to a negative finanical impact (ie, have been hearing that for decades with cancer treatments).

I have found that relaxing and living in the moment and not being overly focused on my disease has in fact helped lessen my sx.  Getting overly fixated on any one thing (including diet) brings me stress.  I do my best, I eat well, I take care of myself and I let the future unfold. Come what may, I am not missing a moment due to fear.

Blessings,  Julie

[bornworrier]

I am not saying the OMS website is proof..what I am saying is that on the website there are links to medical literature that supports the lifestyle changes suggested by Professor Jenelik and others like him.   Again, he is a medical doctor, he has gone through the literature that non doctors like you or myself cannot interpret as well as he can.

He is not a quack--he HAS MS!!! and Terry Wahl is not a quack--another doctor with MS..have you seen her video....?  She hosted a conference to the medical community explaining her condition and what she did to change it.  

Im sorry you dont believe, I really am.  There have not been studies done because non one will fund them.  The drug companies sure wont as they only fund drug studies.  Dr. MacDougall is conducting a study now, and you can read about it on his website that will prove once and for all that diet does work in fighting MS symptoms.  

Julie--

Thanks for answering...dpo the liquid sensations feel like water dripping under your skin.?? I did have MRIs of the brain and have vision issues, so I dont know why nothing showed up...I also have tingling in my head, and other strange sensations from time to time.  my bladder starting bothering me a month or so after I had my first and only bladder infection.  It was never the same after that.  Maybe the anti-biotics had something to do with it..who knows.  

The tips of my fingers get a little numb also when I am cold.  And my thighs get numb kind of quickly when out in cold weather.  

Im glad your MS is so mild..and I wish you all the best.  I hope it stays that way...what does your dr. say about that???  

Take care.

[jujuminx]

My first episode was late in 1992.  Woke with tingling and numbness on the outside of my left lower side (from hip down to foot).  Didn't effect my gait. No pain what so ever. Went to the dr then neurologist.  Lots of bloodwork, neuro tests, MRI of the head (w and w/o contrast). All came back normal. Sx eventually faded in about 8 weeks.

Second episode in 2000. Woke with similar sx. Again went to dr and neurologist.  Same tests, all normal.  Sx faded w/in 8 weeks.

Third episode April 2010. Woke with tingling, hot sensations and minor numbness on left side. Delayed going to dr this time. As time went on sensations increased.  Also feeling of liquid on left side and some burning sensations.  Back also hurt alittle and so did neck.  Eventually went to dr and neuro.  All same tests normal, sx beginning to fade. Took trip out of country to central american country during the summer where air conditioning  isn't a norm. Numbness/tingling/pricking returned but on right side. When I got home went to neuro.

At this point I finally had had enough and had pretty much dx myself. Figured if dr knew what he was doing he would order the tests I knew he needed to order to dx. He did full work up and found minicule deficiency in right foot reflex (but w/in normal range), all other assessments completely normal. He ordered MRI's (all head and all w/and w/o contrast) from 1992 to present to be compared to see if any changes. And ordered spinal MRI (cervical and T) w and w/o contrast (this was the first time this was ever ordered). Said would do LP if MRI negative.

Spinal showed 3 to 5 lesions (some old, some active). He said he could do LP if I wanted but MRI was enough to make dx.  I declined the LP. He did order bloodwork to ck my D levels which turned out to be low.  W/in 10 days of dx (August 23, 2010) I was on copaxone.

Numbness is gone but I ocassionally get tingling, burning, prickling and liquid sensations on my arms or leg. Have some issues with numb fingers every now and again especially in cold weather. No vision issues but no lesions found in my brain. Since sx for me in lower body it was no wonder lesions found in my spine not brain. Duh.

I started the special diet before my dx so I could feel like I was doing something before I got the official dx.  And while I totally understand why you believe what you believe and have made the choice you have made, the truth is there is nothing out there right now that stops the progression of MS. You will find a lot of testimonials and some medical reports on diets but from what I have read the test subjects come from a very, very small pool and the results are subjective.

That being said, I strongly believe in the power of the mind and I also feel that if you feel this is helping you (and it most likely is both emotionally and physically due to the whole foods approach), then you should continue with it.  I am making the same choice.  Please try and understand that there are people here who have an official dx of MS, have done a lot of research, and are making a different choice based on what they believe.  Give them the same respect that you are asking for.

None of us want our disease to progress. But all of us live with the knowledge that our disease may progress and that our future is unknown.  My dx has been a blessing in so many ways.  If I could chose not to have MS I would chose not to have MS but since I don't have that choice I am learning to use the fact that I have it to enrich my life. There is a reason for everything.

Welcome to the board and keep posting.  Hope you continue to have thick skin as some subjects are touchier than others.

Blessings, Julie