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Is it "benign ms" --very scared
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Is it "benign ms" --very scared

I am a 43 year old female with MS like symptoms since I was 21. I had MRI's taken when I was around 23 and also a spinal tap.  Everything was normal.  (My first neuro thought i may have a babinski reflex one time, but upon another exam by an ms specialist at Columbia presbyterian, he did not find the same) And then 3 years ago, I went to an MS Specialist at St. Barnabus hospital in Livingston, NJ.  They have the best MRI's there.  And I had contrast with the MRI's of the brain and spine.  They were normal. No lesions.  My symptoms first started at age with the bladder--i had a bladder infection which went away with meds, but then about 1 -2 months later, i had the feeling like I had to go all the time.  That symptom has waxed and wanned throughout the years, but has gotten better then it used to be. I may have had hesitancy once or twice over the years. I also had an episode that might have been optic nueritis when i was 23 or 24.  It was right after I had the chicken pox.  The eye dr. never said it was optic neuritis, but my vision was cloudy in one eye.  After a few days, it cleared up.  I have gotten it checked since to see if there is any way they can tell if I had optic neuritis and the dr. said there is no signs of it.  The nerve appears normal.  Then I believe i may have horner's disease-one pupil is smaller than the other, and the eyelid is a tiny bit dented in--not really noticible to others.  I also have tingling, have had burning sensations, and the tip of one toe seems to be a little numb most of the time.  I also have other times when different areas of my leg feel like they might be a little numb.  It always goes away though and doesnt last that long.  My feet and hands also fall asleep easily.  Other vision problems include when i am suddenly woken up from a deep sleep, my vision is distorted ( it is almost like a fuzzy tv screen), and this only happens if its dark, and it happened years ago a several times, then just again a few weeks ago.  On occasion I feel dizzy when I stand up, i have a little muscle twitching here and there.  The only cognitive issues (and it may not even be anything) is sometimes I go to do something and then forget what i was going to do, but this is usually when I am distracted at work or busy cooking dinner.  Also, my pcp said i have hyper-reflexes.
In your professional opinion, do you think i have ms or benign ms if there is such a thing.  I know you cannot diagnos over the internet, but i would just like your professional opinion.  I am very anxious and dont know if i could handle an ms diagnosis.  I also worry about my children getting it.  They are girls, 13 and 15.  Thank you very much dr.
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16 Comments Post a Comment
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620048_tn?1358021835
Hi there,   I couldnt read your whole post, it needs to be broken down into smaller sentences or paragraphs, it just easier to read.

I really dont think there is "benign" MS ..I just don't get it..just my opinion.

But others will chip in too and tell you there opinion..

be well,

meg
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338416_tn?1260996698
Hey, no doctors here - (except Quix!) - but we know a little bit about how MS presents.

At this point it's hard to say whether your symptoms are neurological, or caused by something else.  Vision problems can be related to high blood pressure or low blood sugar, as can the dizziness.  I have low blood pressure and often feel dizzy when I stand up.  

And there is no such thing as benign MS - it's a classification that's made after death, when the full course of the disease can be seen.  
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572651_tn?1333939396
Greetings and welcome to the MS forum.  Your user name - bornworrier - says a lot, doesn't it?  Some of us just can't help but worry about the unknown.  Before I go further, we are not a medical doctor site- this is a patient run forum so all of the advice here is from what we know from our experiences and not what we have learned in med school.  EXCEPT for Quix, who is a retired pediatrician, who has MS herself.   No that this disclaimer is done, let us get on with your questions.

some of your symptoms could be explained by MS but they could also be caused by other things.  

Chicken pox is a part of the herpes virus family - viruses can cause long-lasting symptoms such as tingling or the eye pain.

Bladder problems, for women, can come and go.  Usually when it is because of a neurological cause such as MS they stay more than go.  From what you describe, you hesitancy/urgency happen rarely.  Women who has had children tend to have more problems with the pelvic floor muscles that control the whole process - you might want to try some Kegel exercises and see if that helps.

Dizzy when going to a standing position from sitting sounds to me like a blood  pressure problem.  Hypostatic pressure occurs when your BP drops when you change position - this is almost always a  temporary problem and the body quickly compensates for the change.

forgetfulness is a common complaint among women of all ages who are juggling job, children, homes and the everyday pressures of stayiing on top of everything.  Try to focus on one thing at at time and see if that helps you to complete tasks.  MS does cause cognitive problems for most of us, but it is not the ocassional forgetfulness.

LOL I am so forgetful I just went to clean something - came back and saw I didn't finish this or hit send.  I started it about an hour ago.

I hope you'll come back and learn more about MS.  The concensus with us is there is no such thing as benign MS - you don't know what this disease is going to do until we are gone from this place.  With MS you don't know what is coming next, if anything.

I sounds like your doctors are at least looking seriously at your concerns, and that is a good thing.

welcome again, Lulu
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Avatar_f_tn
Hi and welcome. There really is no such thing as benign MS or a touch of MS. If you have to 'listen' carefully to your body to feel any abnormalities, then it's very unlikely that MS is happening. It's not a subtle disease.

My best advice to you is to do your best to relax, and especially, not to convey your worries to your children. Life happens, and if we're going to have MS then we do. It will certainly let us know. Meanwhile, don't miss the great many positives you have going for you.

ess
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Avatar_f_tn
thanks for your response.  It is in your opinions that there is no such thing as benign ms, but there have been reports on it, one from the mayo clinic that disputes your beliefs.  You should not give any "medical" opinions like that if you are not professionals.  I understand your viewpoints however.  I thought I was posting on the Expert forum...how do i post on there? I do want a dr's opinion.

Thanks so much.
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Avatar_f_tn
my bladder problem was bad for the first 3 to five years,but hen after i had my kids it subsided.  It does still flare up though.  sometimes bothering me for maybe a few days or a week, and usually at night when im in bed ready to go to sleep, it always feels like i have to go.  It is mainly urgency and i feel it in the urethra area.
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Avatar_f_tn
Well, there are lots of things to comment on here.

First, and probably most important to you, the Expert Forum on MS has been inactive for a long time. There is currently no doctor answering posts there, and we have not heard that that will change anytime soon. There is an Expert Neurology Forum, if you'd like to look there, but you will not get a response from an MS specialist.

As to what the Mayo Clinic has to say, you should know that they are way out of the mainstream when it comes to MS. They have established their own criteria which are in severe conflict with those of other well-respected MS organizations. See MScare.org for mainstream expert info.

We give no opinions here as medical professionals, which we are not. But we have seen and known too many patients who were told their MS was mild, benign, or some similar word, and they later had terrible symptoms which 'possibly' could have been avoided had proper treatment been started. There are no guarantees, but most of us prefer to go with the odds.

ess

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Avatar_f_tn
I should also add that 'benign' is in the eye of the beholder, not the sufferer. Many doctors have used that term because the patient can still walk, or maybe doesn't have severe cognitive difficulties.

Easy for them to say. They should try one day in the shoes of these people. The effect on their lives is far from benign.

However, hardly discernable oddities are not likely to be MS, benign or otherwise. That's why I think worrying is not the right idea.

ess
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338416_tn?1260996698
I think if you want the opinion of a doctor, you should probably ask your doctor!
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Avatar_f_tn
what did you mean by saying that "hardly discernable oddities are not likely to be MS--benign or otherwise....?"  are you saying you dont think my symptoms sound like MS???  Just curious.

If essdipity or anyone else can help, id appreciate it.

I havent gone back to the dr. because im scared, and i dont want to have any more MRI's.  Ive had enough MRI's and catscans --enough radiation exposure--Also, if i have no lessions and only mild symptoms would they still want me to go on the medicaiton ?? how could you even know if it was working, ...???  I know im babbling here--but i have worried about this for so many years.......thanks.
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572651_tn?1333939396
I just was reading the latest isssue of MS Focus, a magazine put out by the Multiplle Sclerosis foundation, and a bit about benign MS popped off the pages at me

from Greg Zarelli, MD
"a number of people with MS have so-called 'benign' MS in which they develop a few lesions that allow the diagnosis to be made, then seem to go into remission with no further disease activity or new lesions.  The Mayo Clinic estimates that about one-third of people with MS will have this form of benign disease."  

That is a huge number of people left waiting to see if their disease ever gets worse. I can't even begin to imagine that many cases being left to see if they stay the same or not.  

our point is you will not know if the course of MS is benign and not going to do any harm to our quality of life, until we die.  The disease is always present, it does not go away.  

MRI's do not involve radiation and pose no lasting risk to the person getting the MRI.  If you have problems with anxiety in the MRI, ask for a mild tranquilizer to help.  

We don't know 100% that our drugs are working - this disease is very MySterious and so are the drugs.  In fact with Copaxone, my drug of choice, they don't even know how it works, it just does.    But we also know that most of us here have chosen to be proactive and try whatever is offered to us. That is a better option than sitting back and waiting for our bodies to fail.

Do go back to your doctor - there are lots of things that scare us but we do it anyway.  If you can't do this, than please find a way to relax and put this worry aside.  Either way, please think of your girls and set a good example for them.  

-Lulu  
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987762_tn?1331031553
I'll be bold and tell you that the symptoms, as you've described them, dont sound like MS to me, and just for the record, I'm basing that mainly because usually with MS, after 20 years even with a mild presentation, you would be expect to have more issues and many that do not go away anymore due to the completed axonal damage.

I also noted that you do not mention anything at all about fatigue or gate issues or heat intollerance or consistent cognitive issues or tremors, all in the top list of sx. What it does sound like to me, are circulation issues, that can explain most of the sx you've mentioned and worth checking out with your family dr. I'm not dismissing any of the things that have been an issue for you, just saying that there are other explanations, which doesn't necessarily add up to MS.

You appear to be suffering with some health anxiety, i appologise if this is a sensetive subject for you, please please dont let this get out of control, life doesn't need to be more difficult so please speak to your family dr about how you are really concerned and do need reasurances and or help. Dont be scared, be brave!! :-)

To answer your q's: If a family member has MS the odds are still only slight that another family member will develope MS (5-10%), many many other diseases have higher odds.

Benign MS can only be acurately determined, at post mortum! A dx made prior to the scientific evidence is more likely to be inaccurate, and contradicts medical research.

DMD (disease modifiying drugs) are not likely to be rx with out a dx, they are very very expensive and require daily/weekly injections. Minor sx that do not disable or significantly affect your quality of life, are not even likely to get you on any of the drugs that help with individual sx. Its a mute point, DMD's are the only thing that give a person dx with MS a chance to slow down the progression of the disease, there is no cure but the DMD's offer some hope and i'll even say a fighting chance.

Cheers.......JJ
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Avatar_m_tn
I don't have much input on the symptoms and what not, I'm too tired for that :) I just had to comment on the term "benign M.S.".

I just LOVE (sarcasm) the term "benign M.S.". This is the term that my HMO's neurologist used to get them out of paying for my medication for 2 years. By the way, 2 years later I am in a wheelchair, lol. So, there is such a thing as Benign M.S. but for most, it doesn't stay benign.
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Avatar_f_tn
thanks so much for your reply.  I do have fatigue that i forgot to mention.  It comes and goes in waves sometimes.  And usually i do not feel rested after a good nights sleep.  During the past 22 years the fatigue would be worse at times than others, but not disabling or debilitating.  Sometimes at night i get really tired while watching tv and kcant keep my eyes open.  Does this sound anything like the fatigue associated with ms?

Also, the bladder, i forgot to mention it is mostly frequency that i have.  I got a little mixed up with urgency and frequency. its really not the urge to go right away, it is the feeling that i have to go all the time, and sometimes even after voiding it still feels like i have to go.
The pressure sometimes radiates into my legs.  

One other question, is it unlikely that i have ms since my MRI with contrast of both brain and spine after having symptoms for 19 years?  i remember asking my dr. that after this long a time period, wouldnt something have shown up by now?  He said yes, that is correct.

I know I am not brave.  I dont have much family to support me.  I have always worried about my health since all of this started.

THanks for your support and i only wish the best for all of you and hope that your course of the disease is BENIGN--!!!
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987762_tn?1331031553
I think you might have a misunderstanding of Benign MS, with benign MS an individual meets the criteria for MS but they dont live with the symptoms like the other types of MS. In short, it basically means they have lesions from demylation (sp) in their brain and or spine but they dont continue or ever experience the expected symptoms consistent with having MS lesion damage. This is one of the main reasons why benign MS is diagnosed via an autopsie, the patient may not have ever known they had MS but they had significant lesion load for an MS diagnosis.

Living patients, may first experienced symptoms (CIS) but their MRI shows a higher lesion load than CIS, meeting the criteria for MS, they fully recover and may not experience another MS attack/flair/exaserbation of symptoms for 5, 10, 20 years or if ever again. I'm sure someone would explain it better but thats basically what benign MS is.

What you seem to be thinking is that benign MS is when you have a few mild-er MS type of symptoms and over a period of many years no 'MS' lesions ever show up on the MRI's, that would be inconsistent with a dx of benign MS.

MS fatigue IS disabling and debilitating, so no i do not think you have experienced true fatigue, or even MS fatigue. When i am dealing with fatigue, i sleep 18 hour days and still dont have the energy to hold my own body up or chew. With the other question, your dr is right and should be of some reasurance to you but if you are still concerned then please speak to your family doctor about your concerns and anxiety, it will be of help to you, if for nothing else but to have all the known MS mimics looked into again.

Cheers........JJ

PS: Ken is a classic example of why a dx of benign MS for the living is more than likely to be WRONG!

  
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Avatar_f_tn
I again thank you for your post.  My fatigue is more that i feel tired, but not where i cant function and my eyes when i read after a while get tired and i have to close them.  I also sometimes get tired in front of the tv and cant keep my eyes open.  

I guess I was using the wrong term with "benign"  maybe what i want to ask is this..

"Is it possible to have a mild form of ms for your lifetime?  Does relapse/remitting ALWAYS progress?  Does every form of MS always progress?  I guess I am just looking for some POSITIVE things. I am getting so depressed about thinking I have MS, I just am just trying to find something that will make me feel better.  Like maybe it wont be so bad.  Maybe I wont get worse, maybe there is a chance it wont progress........maybe ill keep functioning like i always have....thats all.

My friend's mom has ms.  SHe has had it for over 50 years.  She had bad fatigue and had to sleep while her kids were in school, but no one ever knew she had it back then.  My friend told me she did everything a little bit slow and had trouble writing, she did have an attack  where she went blind for a few days and another where she dragged her foot....now in her seventies, the bladder is getting bad, and the depression.

BUT, she did raise 4 kids, and never needed aid to walk.  She did seem to live a full life.  She complains more about her marriage, then her MS.

Anyway, what i am trying to say is that I am searching for hope.  I dont want to be depressed anymore.....

thanks.

If you have been having ms-like symptoms for over 20 years, with no lessions visible on MRI, does that indicate that you LIKELY will have a mild case throughout your lifetime, (along with other factors such as early age at onset (21), female, mostly sensory symptoms).
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