MS Diagnosis

Hi Barbarann,

Welcome to the forum.  I am sorry to hear of your diagnosis and that things are getting worse.  That is indeed the nature of this unfortunately.  Are you not on a progression therapy?  I was diagnosed at 43 about two years ago.  I also had little warning before I was diagnosed.

Love and prayers,

Hi, Barb, it's a frustrating disease for sure!

I've just finally been diagnosed but the symptoms have been around for over 12 yrs... they just didn't get bad enough to get anyone's attention until two years ago... finally dx'd in March (I'm52). Going for an LP next week or early the week after depending on docs schedule.. doc will make a decision on meds after the LP. At the moment, my symptoms are mostly below the waist (numbness, stiffness, balance, spasms, pain, plus vision, eyet tics , migraines, and GI tract issues just to name the basics) and they're mostly just a major nuisance.

The more I've learned, the more I realize I was missing a lot of symptoms prior to the major ones. This forum has been a really great place for me for information and lots of help with all my questions... I just keep asking... and adjusting. Welcome!

Hey Barbarann!

Welcome to the board! I'm so glad u've found us and decided to post! This is a great place...as i'm sure u'll soon see. The people here are wonderful and willing to try to answer u'r questions and help where they can. Please feel free to ask anything u'd like.

Wow...not on a progression therapy huh?? That seems way scary. U'r getting worse and not on any meds?? Does u'r doc give u a reason for not trying any of them? What is it that is diff about u'r situation that makes them feel u don't need to be on one? I'm sorry, lots of questions, but it just seems that fighting this in any way would be far better than sitting back and letting it roll. Numbness and stiffness in u'r legs is actually quite common with ms and given that u'r doc has u on bacflocan seems to indicate that he sees the need to treat the symptoms...so why then doesn't he want to treat the cause?? Best wishes to u on this friend...seems like such a roulette.

Hi Barb!   My name is Barb also, and I was dx last year at the age of 50.  I also did not have much warning prior to an exacerberation/flare.  In retrospect, my only previous symptoms were a partially numb foot and fatigue.  My foot was that way (and still is) for several years and the doctors said it was probably caused by a pinched nerve.  I am only taking a low dose of baclofen in the evening right now, and I do not really notice that it has a noticeable effect on the stiffness in my left leg.  My other symptoms are pain/ siffness in left rib cage, occasional back pain, and burning/tingling pain in left forearm and on the top of my head.  Neurontin seems to lessen the burning/tingling pain.

I am not on amy of the progression therapies either although I tried 3 different ones and had bad reactions to all three. (Long story).  I have been to a ms clinic and they consider my ms to be relatively mild at this point.  I have another MRI at the end of this week and if it shows no active inflamation I will not try any new therapies for at least 6 months.

I am also surprised that your doctor/neuro has not put you on any of the DMD's. There are lots of people in their 50's and 60's who are on these treatments.

Barb

Doctors start taking medications seriously when patients "complain" -- report - -that they can no longer easily perform what doctors call "activities of daily living", or ADL's. That is, when it is challenging for you to: dress yourself, bathe yourself, feed yourself, toilet yourself, cook, do basic housecleaning, walk easily (at least 2 car lengths without support), do your paid job (if you have one), massive fatigue (you sleep 6-8 hours a night but still need to sleep during the day), have sleep disturbances (you DON't sleep 6-8 hours a day)..

A lot of sensory stuff -- numbness, tingling -- can't be found when the doctor examines you. YOU may experience it...but he (she) can't test for it, can't do anyhing to see just how severe it may be. So those sensory things are "self-reporting" -- if YOU complain loudly enough, if you talk about how they impair your ability to get about your normal day, then they're likely to try to find a medication that can help them. Not CURE them, not make them go away entirely...but make them at least manageable for you.

But doctors don't like to prescurbe A LOT of medications...and like to keep the serious stuff (like steroids) for the serious impairments (you can't walk anymore, or your bladder ceases to function) since most of the really serious meds also come with serious side effects.

A lot of what comes with MS is stuff we just "have to live with"..numbness and tingling are at the top of that list. But if it is REALLY challenging, then talk with your doctor about it. Neurotonin seems to help a lot of people, with severe sensory or nerve-related pain.

Thank you everyone for the info.  I will be going to the MS Clinic in two weeks and will talk to my Doctor about medications.  It seems that most ms people have had some previous signs before the first episode.  In my case there was nothing - just numbness in my legs.  I have also had the numbness in my rib cage and the electric shocks up the back of my head but all of these have gone away in about a month.  I was put on steroids a couple of years ago but that only made be sick and the symptons were still there.  I am still working full time but need a walker to get around - balance is not very good.  The one thing that I am thankful for is that I do not have to worry about paying for any medications, tests, etc. (in Canada) even the walker was paid for by the health care - that relieves some stress.   I have just recently gone through breast cancer as well - as if I didn't have enough problems.  Thanks again for all info. 

 

Hi,

I was diagnosed (finally) at age 57, although I had symptoms for the last 20 years but never worsened until just 3- 4 years ago. I'm now 60 and require a cane for assistance in walking.

Over the years of seeing many doctors, they indicated a possiblity of MS to it was all in my head. Don't feel to upset of what you feel the doctor is thinking about you. No one has exactly the same symptoms with MS.

I'm currently taking Betaseron after 2 years on Copaxone.

Good luck to you and keep a positive attitude. Get lots of rest and try Yoga or at least try to stay relatively active.

Regards,

Gary

I went to MS Clinic last week.  The doctor is now questioning whether I have MS or not and has booked me for another MRI.  When I walk my legs get stiffer and more numb to the point that I cannot hardly move.  It feels like my legs are wrapped in cement and my feet are wrapped in foam. She thinks that most MS patients feel better after they walk because the stiffness lessens.  All the previous MRI's have shown very small lesions and the last one (about 6 months ago) did not show any change.  Could this be something else?

Barbann, what your doc is saying about the stiffness is true for me... with my legs the stiffness is like the legs aren't getting the message when I think I want to move, but once I'm up and have begun moving, they finally catch up and the stiffness lessens. It's hard to explain. I feel like I'm frankenstein walking at first or off balance, going to teeter totter... but once I'm moving... then they're listening... it's a message issue. The Nerve conduction Test I had confirmed my nerves to my legs were much smaller than they should be for a woman my age and size, and the messages were delayed... thus the delayed response time.

The perpetual stiffness/heavy legged feeling can also be many other situations like peripheal neuropathy, which my neuro hoped I'd had cos that's very treatable and often healable. Diabetes can cause these problems too. Many many other issues can cause the stiffness. You gotta let the doc work thru the steps...

The key to MS is the "index". Let the doc put the puzzle together... one or two don't make the disease. And please try to avoid reading all the symptoms of MS, it's too easy to plant the stuff in your subconcious and drive your stress levels up worst. Be good to you and patiently wait the docs methods out. As a friend of mine told me, don't wish yourself that slippery slope.

Hoping the best, would love to hear you've got something she can take care of pronto.

Hey Barb,

  I do not get any swelling of my feet.  Usually swelling of the feet or ankles is associated with circulation disorders.  In women, it can be a sign of heart disease.  I would definitely tell your doctor.  Swelling is usually caused by a condition called "pitting edema" and it is typically not a good thing.  It can happen once in a while when you stand for a long time, or during heat spells or if you have ingested a lot of salty foods.  Usually this is short lived however and will resolve itself in a day or two.  If this is lasting longer or if it happens frequently, it can be a sign of a more serious problem. This is my understanding of swollen feet but I am not a doctor.  If I were you, I would let your doc know.

I have had my blood checked several times in the last 6 months (due to breast cancer) and the results came back with no indication of diabetes. I have also had my heart checked for the surgery and everything was ok. The swelling happens every day and will only go away if I sit with my feet up for about 20 minutes. Since I am sitting at my desk most of the day, the swelling usually starts in the morning. It also gets worse when I walk even short distances. I can hardly move once it sets in. Although the numbness is the only symptom that has never gone away, I have still had the electric shock sensation up the back of my head. That lasted for about a month. I also get numbness in my back and part of my torso but that seems to go away after about a month. I would like to think that it is not MS but no one knows for sure.

After my last visit to MS Clinic, I realized that the neuros have been telling me all along that I had Transverse Myelitis.  I always thought it was a symptom of MS and did not question it - not realizing it is a different nerological disorder.  My last MRI showed some new lesions on my spine.  Everything started to make sense once I did a little research on this.  I am still puzzled about whether it will eventually turn into MS.  Right now I do not have any other symptoms except for the numbness and stiffness in my legs.  Has any one had TM that turned into MS.