New to this forum, afraid with questions
 

Hi All, I'm new to this forum. In February 2011, I had a bout of suspected optic neuritis in my left eye. My vision was blurry in that eye for a few weeks and then it went back to normal. In April 2012, I got numbness and tingling in all four limbs which I still have (7 months on). I had my first MRI last week and here is what the report said:

Multiple increased T2/FLAIR signal intensity lesions are seen in the periventricular and subcortical white matter bilaterally in a distribution consistent with multiple sclerosis. A solitary increased T2 signal lesion is seen in the right side of the pons. No enhancement of these lesions is demonstrated.

I will be making an appointment to see a neurologist next week. I'm really terrified of being diagnosed with MS. My biggest fear is not being able to live a normal life. I have a few questions that maybe folks here can help answer.

1) I understand that the following line in the report is a good sign: "No enhancement of these lesions is demonstrated." Could somebody explain why?

2) Am I going to be able to live a normal life with MS? Will I be able to continue to work at a job that requires a high intellectual ability and performance.

3) Is anyone familiar with Terry Wahls supposedly MS curing diet?

Hello Olive and welcome to NeuroTalk.:)

So sorry for your MSy symptoms.:( I hope you find out soon and in the meantime, take a deep breath and try to keep your stress level down. It only makes things worse than they have to be.

No enhancement usually means that the lesion is not active at the moment and yet you may still be having symptoms.

Living a normal life depends on what direction your disease takes. A mild onset can mean you will be able to carry on as usual, with a few restrictions.

I know absolutely nothing of ANY diet that may be a cure for MS. Be careful out there on the web...charlitons(sp) abound. A well balanced diet with a cutback on saturated fats, is always good for your health, but a cure? NO!

Thanks for joining us.:hug:

Thanks, Sally!
 

Hi Sally,

Thank you for your quick reply. I tried to post a link to Terry Wahl's Ted Talk, but apparently I'm not allowed to do so before having 10 posts. You can find it on YouTube by searching for "Terry Wahl MS Ted Talk." She is a physician and researcher with the most severe form of MS. She claims to have made a complete recovery through a diet which ensures she gets all the nutrients she needs daily without supplements. I'd be curious to know what you and others think of this.

Cheers,

Olive

I think this might be the video you're talking about:

http://www.youtube.com/watch?v=KLjgBLwH3Wc

Yes, thank you for posting!
 

What do people here think of the video?

hi olive and welcome to NT.
i'm glad you found this.

your post brings back memories of my experiences on the road to dx (diagnosis). it also has given me the benefit of almost 12 yrs post dx. in which i have some hingsight now and have gained some wisdom concerning the disease.

i'm RRMS; now PPMS but i'm stable. i still walk with a cane, am independent and drive my car. i'd like to encourage you to take things one day at a time.
no one knows what the future holds, even for healthy people. everyone's MS is different and no one has the same course. while some folks do get very sick many others con't to work, have children and live their lives.

we learn gradually how to make adjustment, like using a cane, but we get thru. this is a great site for info and support. please stick with us for help.

i don't know about the diet and frankly don't believe in "cures" like that; imho. also, if you havn't told anyone at your job don't do it right away. there are consequences to telling so think it thru.

anyway, welcome. hope to hear more from you.
write all your Q's down and try to bring someone with you to the dr appt for a 2nd set of ears.

also, i've learned to start a medical file on myself. get copies of mri's and reports. as you may see other drs down the road they will want these records. always keep your file. also, try keeping a sx (symptom) journal. it will help your dr track your condition on a timeline.

Hello Olive and welcome to our gathering. We can share our experiences and the information we have gathered with you (Thanks SallyC, Kitty and NurseNancy), but as NurseNancy put so well, everyone's MS is different.

Hope that you get some answers soon, but please know that it can also be a long journey to diagnosis; so please try to take one day at a time and let us know how you are making out along the way.
It really does help to share and ask questions of those who have been where you are now....and yes, to even vent if/when it becomes frustrating.

We are here for you :hug:.
With love, Erika

Hi and welcome to NT. We are a great group here, a family. From your initial post it seems like you are a very intelligent person and worry about staying that way and being of use to yourself and the world. As the others have said, MS will take a different course with every single person. It's all according to where the lesions are, other health problems determination, guts, will, etc. As you well know that in life you are continually reasessing the situation, resetting goals, basicall making changes where changes need to be made. In my profession it was the nursing process. Oh how I hated that term in nursing school but learned that it's just something that one does in every situation they come upon.

I was a cardiac nurse before MS. It was my life, my passion. I worked for several years after my diagnosis but eventually had to quit. There are many here who work full time, learn how to adapt so they can work. There are full time Moms, and who can not say that a full time Mom is the hardest job ever. Get the info you need, asess it, take a plan of action, be willing to reasess and replan and move on. You have to make this YOUR journey

Forgot to add, I still drive on my own, travel, go shopping, go to the Y and do some of the things I used to do and have learned how to do some different things to take the place of what I can no longer do.

Hi Olive

Nice to meet you - but for all the wrong reasons.

I agree totally with everything that others have said. Sal was right in saying that there are a lot of charlatans out there who promise the world and deliver nothing but an empty promise, and often a reduced bank balance.

As you have probably heard, MS is usually unpredictable, and no two cases are the same. We all present and progress differently.

I am eleven years in, still walking (sure, not so fast, or as elegantly as before, but still on two legs...), still working four days a week as a business studies teacher, mum of two (who were only young when I was diagnosed) - one is now at university, and the other is in her last year of junior high school), I have been married to the same wonderful man for 22 years and we have lots more to come.

My point is, MS is not an ending, it is a readjustment. It is a time to reassess, find your strengths, ditch whatever weaknesses you can afford to lose and move forward.

Non-enhancing lesions mean that they are not currently active (no inflamation is happening right now). That is a good thing.

IF you are diagnosed with MS, it is not good, but there are many worse things we could have, and yes, it is possible to live a happy and full life for a long time. None of us know what is around our corners - sure MS could become seriously disabling, but so could lots of other things that may happen to us.

I hope you get the answers you need - sometimes I think not knowing is the hardest part.

Regards

Lyn

Hi Olive -

Welcome to the board. MS is not very predictable.

It started with ON for me too. January 1988. I was working at a nuke plant then. And I gotta go to the morning daily operations meeting in 10 minutes. We got a Soyuz launch this week and subsequent docking with the international space station. I still work. I even still walk normal. Can't run, but I'm also getting old...

Tom

Welcome to NT...it's a great place for all of us to share, cry, vent, laugh and just try to get on with daily life.

NurseNancy gave you the right advice-don't say anything at work yet!! Keep a symptom journal and a list of questions for your neuro, and try to bring someone with you. The info can be overwhelming and you might forget what he/she says. Or take a recording device.

This disease is such an individual disease-treats everyone special;) none of us has exactly the same symptoms, or degree of advancement. All I can say is take in information with moderation; try not to become obsessed about it. Just note what's going on and live your life-cause you only have this moment...

I have never heard of a diet that cures MS, just can lessen the symptomology and progression. There is a lecture on youtube about "minding your mitochondria" that touts massive amounts of kale. Haven't had the courage to eat it yet:rolleyes:
The Swank diet has been around for a few decades, I think. It's pretty strict, but has it's fans.
I believe in a diet of moderation, exercise, rest, and trying to stay active. Occasionally I will have a pity party, but when I realize I'm the only participant, I close it down and get on with life.

Keep us up to date please. Make sure you feel comfortable with your doctor. I've been through three and now am so happy with my neuro-it makes a difference if you feel listened to!!

and the last bit of advice-you are not alone in this...we're here, we're soldiers in this fight, right along side of you...:hug:

Hi Olive,

I'm so sorry that you have to deal with this and that we have to welcome you to the forum. I think you will find this place a life saver. People are gracious and kind and have lots of great information. Never be afraid to ask a question :)

I can only repeat what many others have said. Everyone's course of MS is different so the best thing you can do for yourself (and maybe the hardest) is not to compare yourself to other people. The number of lesions you have does not necessarily correlate with how mild or bad your MS is or will be. In other words, you can have TONS of lesions on your brain and few to no symptoms or just one visible lesion and many problems.

So I can only give you some hope that there are people out there with mild MS. I also got optic neuritis in one eye as my first symptom. So far I have not had a relapse since diagnosis (I have been on Tysabri for about 4+ years). I walk normally (my balance can be a little bit off but no one notices except when I get bruises!). I can exercise at the gym. I can stay up really late. I can go out with my friends. I can drink alcohol. I can do many things. And I still work full time.

The only thing that slows me down is the heat -- one thing that many MS patients have in common is an intolerance to hot weather, hot showers, hot tubs etc. I get really fatigued and my brain gets foggy and slow when the temperature is high (like 90 degrees or hotter)--my vision gets a little blurry too. But if I get out of the heat and stay cool all of that disappears.

I really understand your fears about being able to continue in a job that requires high intellectual ability and performance. I'm not sure what you do for work but I was deathly afraid I would lose all cognitive function and not be able to do my job. That is still probably my worst anxiety about this disease. I'm a professor, and have published books and articles and given lectures presenting my research in front of large crowds of people. So my work is really my brain and my brain is my work. I need to have sharp faculties to speak in public, teach, and especially to write. So far (knock on wood) I have not been terribly slowed down by any physical symptoms of MS, only by emotional adjustment like anxiety!!

Things like diet, exercise, and therapy can make a difference but they are not cure-alls. It's just a matter of figuring out what helps you feel better. That might take awhile. In the meantime, try not to panic or beat yourself up.

Please keep us posted. :hug:

First of all......do not get paranoid!!
I say that with love as I got very paranoid after my diagnosis because my Neuro specifically stated that I had a lesion in the cognitive part of my brain and that concerned her.
With that thought in the back of my head, I started questioning every lapse in thought I had and worried endlessly that I was "losing it".

When I went through a bout of fatigue, my doc put me on Provigil (a Ritalin type drug). It woke me up and put my brain on rapid fire! I mean I was processing info like an IBM computer! So I think that tells me I am okay.....if my cognitive was broke it would have remained broke even on the Provigil....:rolleyes:
Now fast forward about 11 years.....I questioned my new Neuro about the lesions in the cognitive part of my brain. His response, "the entire brain is cognitive!...." He knew what I meant but his response made me laugh.

I still walk, talk and can rub my belly and pat my head at the same time. I have days I feel like I have MY M.S. and days I forget I have M.S.......but that is me. For the little things that pop up, I have actually gotten used to them and work around them. I medicate when necessary and go on with life. Unfortunately you are at the scary "what if" part of YOUR process. The longer time goes by you will come to terms with YOUR M.S., and what it stands for in YOUR LIFE. Yes, there will come a day when you even stop telling people you have it. (When I was first diagnosed I told everyone out of sheer shock).
Please hang in there until you get all your answers and know that this is not the end of the world and don't let all the "'well do'ers" tell you horror stories about the John Doe they know that has M.S. and how he is just a head on a pillow.....YIKES. Let that stuff go.
Your job is to stay positive. If you get too freaked out, do what I did and see a councilor. That really helped me put my thoughts together.
Big Hugs Big Hugs Big Hugs

Hello Karilann

I was trying to post a 'thanks' on your reply- because I thought it was a great and really positive one.

For whatever reason, the forum wouldn't let me do it, so here it is - thank you - great post!

Lyn :)

Thank you
 

Hi All,

Thank you for all the supportive messages. I'm still waiting for an appointment with the neurologist, and hopefully will know more once I've seen him.

Out of curiousity, has anyone else here experienced numbness and tingling in all four limbs that's gone on for months and months?

Cheers,

Olive

Hi and welcome to NT, Olive.

Yes, I've got lots of numbness and it continues to progress. Its possible it could be due to something else, but I don't give it much thought anymore. As they say: It is what it is.

Best wishes to you -- come back and give us a report. :hug:

Gosh, I've had "sock toes" (feels like I have wool socks on) for over 7 years. Only diminished a little this past summer...
tingling comes and goes...I just have learned to write it in my symptom journal with dates of onset/remission and move on...

I didn't before being dxd, however...I would constantly think and worry about every symptom and whether or not it was part of what I thought was MS. Now, after several years, I have learned to try to ignore things unless they really bother me.

Appt with Neuro, but not until January
 

Hi All,

I finally have an appointment with the neurologist, but not until January. I wish it was sooner because if I do have MS, I'd like to get on medication as soon as possible to lower the risk of attacks. Is it a concern that I have to wait two months for a first appointment with a neuro?

Cheers,

O.

In my humble opinion, in terms of your sanity, and your peace of mind, the time lag is significant. But realistically, it probably isn't in so important in the grand scheme of things.

This of course all changes, if you have any changes - such as new symptoms or an exacerbation and your disease process is active.

I wish you all the very best - keep a diary of events and symptoms and if anything does change or happen, make sure you call your doctor's office and let them know.

Regards

Lyn

It depends on your Neuro Olive. Some say ASAP for meds, others say wait and see?? I don't think 2 months is too long to wait, unless you are in the middle of a heavy hitter attack of it. Then I would go to the ER and let the ER Neuro see you.:hug::hug:

i don't thing it's too long to wait in terms of the MS. in terms of your sanity......well....

if however, you have any sx's (symptoms) that get worse and stay worse for 48 hrs i would call his office.

try to get busy with some sort of project, like a book, to take your mind off the wait. the holidays will fly and Jan will be here fast. keep us posted.

It's difficult to wait, I know. What is even more frustrating is when you see the neuro & they're not sure-"we'll monitor you"...
Like everyone said, if you get an uptick in symptoms or new serious ones, call the doc and/or head to urgent care or the ER...