You are never too old to be dxed with MS

[Siddy1]

To quixotic1

I read your post with interest.  I would say that you are never too old as I was diagnosed with Secondary Progressive MS just over a year ago at the ripe age of nearly 66 years.. My symptoms  led me to a Neurologist who diagnosed MS almost immediately, He performed numerous tests and based on those results he sent me  to a well respected Neurologist who specializes in MS for a second opinion

The Specialist  reviewed everything and did a thorough physical and psychological exam.

MY TESTS  included:

BLOODWORK to rule out everything but MS.
VER -Virtual Evoked Response (eyes)
SPINAL TAP -  2 oligoconal bands present
MRI - lesions on the brain which had shown up on previous years MRI's but which were thought to be TIA's at the time.
VER - normal
FULL BLOODWORK -  normal  - Slight elevation of protein. Every known possibility,  including but not limited to Lyme Disease,  ruled out.
and
EMG's inconclusive but not 100% normal
.
TREATMENT
Solumedrol for 5 days - not effective for me

DIAGNOSIS - Secondary Progressive MS

PROGNOSIS - Nobody knows for certain but likely to end up in a wheelchair OR symptoms could disappear.  After nearly 2 years of slightly progressing symptoms I don't think the latter is likely to happen but I can always hope.  Dr. recommended REBIF which I declined.

MY OWN TREATMENT:
Have taken LDN Low Dose Naltrexone  4 mg reduced to 3 mg for ONE YEAR..  No improvement whatsoever. LDN is supposed to boost the immune system while REBIF does the opposite. Two schools of thought here in MY OPINION ONLY. Boosting the immune system can also speed up the myelin deterioration process/progress.  Suppressing the immune system  could also impair the  repair process  -  so you pay your money and take your choice..

My only symptoms are cut and dried - left arm and hand weakness with  left leg heavy, clumsy and dragging.  These are the same symptons that sent me  originally to my Primary/Neurologist in a less severe form..  I trip a lot resulting in two major emergencies. No other remarkable symptoms.

PROGNOSIS - Nobody knows for certain but likely to end up in a wheelchair OR symptoms could disappear.  After nearly 2 years of slightly progressing symptoms I don't think the latter is likely to happen but I can always hope.

Absolutely no family history.
Physical Therapy does not help me
Solumedrol/Steroids did not help me

So really in the blink of an eye I have gone from being  very active to being  housebound.

I think I may be one of the lucky ones in that my symptoms manifested themselves late in life.   It is thought that stress and body trauma play a big part in MS and it is interesting to note that I had a hip replacement one year before all this and when I came out of surgery I was unable to lift my left arm or leg prompting speculation  of a TIA.  This went away within a day or so and I was able to get up.  When later discussing this and my dx of MS with my Orthopedic surgeon (on a yearly follow up visit) he concurred that it was apparent that the hip replacement trauma most likely triggered my MS.  He asked me "knowing this now, would you still have had the hip surgery?" to which I replied "yes".

My Physical therapist was not surprised at all because he had recently had a patient that had a major car accident and severe trauma.  Apparently he was perfectly healthy before the accident but not long afterwards was dxed with MS.

So what does that say?  There are many websites linking trauma to MS and autoimmune diseases.  I was wondering if any readers have also suffered major trauma and were subsequently dxed with MS.

[Quixotic1]

Hi, Siddy, I'm sorry I left you waiting for a response.  Mainly I wanted you to describe exactly what you did so that others could see another way that MS presents and gets missed, then diagnosed.  New people to the forum keep saying they find it really helpful to hear what others have gone through.

I thought your story was very interesting, especially the "polio" incident.  I don't know what I think.  It was near enough to the era of the huge epidemic, and the incidence of polio didn't really plummet until the Sabin vaccine.

What I am thinking about doing - and I would like your opinion - is to do another post on "Getting a Diagnosis of MS" and have all of us who are diagnosed to copy and put our stories down. (Sherma, you, T-lynn, me , karzme, maybe some of the MSer's who post regularly on the other forum).  I did it back in late May and it's pretty far off the main page.  But I think we should do it periodically so newbies can see it.  So many people have said that reading the whole individual journey made them feel that this site is more personal and not just a bunch of disjointed questions and answers.  It makes this site more approachable.

What do you think?   Quix

[Siddy1]

I just checked in after a while to see if there was any response from you. I answered your questions some time ago but maybe you read the answers and had nothing much to add and if that is the case, just ignore them. They may not be helpful to anyone.

Siddy1

[Siddy1]

Sorry, this is so long winded.

Quote:

"..........That goes to the knowledge that in many/most people the disease is well under way, by the time there are symptoms. I would actually interpret your story a little differently. Instead of saying that the trauma of surgery triggered the MS, I would say that it unmasked it, triggered a more progressive course of a disease that was already present subclinically. If that was not the case then it would seem they would need to give you the diagnosis of Primary Progressive..............."



Hello Quix - thank you for your input.

Indeed, the disease may be 40 years "under way" if I am to believe that my first symptoms were at the age of 21.

When I posted this first message, I left out one important piece of the puzzle not wanting to bore anyone with too much info. However, I realize it is probably important in understanding my particular dx of Secondary Progressive (SPMS).

I am British (not that it makes any difference) and moved over here in the 80's. In a discussion with my Neurologist and going back trying to recall anything of medical significance at a younger age, I recalled an incident that occurred in 1961 (age 21) about 6 months after the birth of my daughter. One morning, with no prior warning I literally could not move to get out of bed. The doctor made a home visit (they did back then) and after examining me he concluded that I had Polio which was one of the most feared and studied diseases of the first half of the 20th Century. Scary stuff!

I cannot recall a lot of details, but I do remember it took about a month or so for me to get back to normal with absolutely no recurrences for 40+ years. I don't even know if I had ever been vaccinated against Polio as a child, or whether the doctor gave me a jab there and then or how and why I recovered. (The Salk vaccine for Polio prevention arrived in 1955) I had totally forgotten about this because to me it was a short term thing and of no real importance.

We know that in some people (I stress that), any major event can trigger the immune system to respond. It could be an infection, a vaccine, stress, body trauma, etc. which may trigger the first episode or subsequent episodes of loss of neurologic functioning in Multiple Sclerosis.

My Neuro believes that this could have been my first signs of MS and in order to make a definite dx of MS they like, wherever possible, to have at least one prior "incident" and ergo, at the age of 21, I initially presented with diffuse weakness after my first childbirth and thereafter remained quiescent for 40 years.


".........Do you mind talking about what your course was like from the first symptoms that you now think were part of the MS? I understand why you declined Rebif if you now have a diagnosis of a progressive-stage disease................."


Fast forward 40 years and apart from my "on and off"  low backache and occasional neck problems in 1998 (which we did not connect and still have not connected to MS), what I call my "real" symptoms started in 2003 at the age of 63 with shoulder pain in my left arm upon lifting it above my head. My Neuro at that time said it was probably bursitis and it would go away. Lucencies shown on x-rays of the bone in my arm were r/o for multiple myeloma and put down to disuse due to pain. I also reported (BPPV) Benign Paroxysmal Positional Vertigo in 2003 which was not too much of a problem as long as I was aware of it and, indeed, my arm did get better for a while. Shortly after my  right THR (right hip) in 5/2004 I felt really good and was walking around the Malls, etc. believing all my leg problems had been due to my hip.  However it was not to last and I began to slow up, my legs began aching and I tired easily. Then in 2005 my left arm presented with a weakness, particularly when typing. Over the next couple of months I could not ignore it especially as my left leg was becoming a problem so I went to my primary care doctor  who immediately concluded that I had a TIAs. We now know this was not correct and that the low load lesions on the yearly  MRI's of my brain  were most likely due to MS diagnosed in 12/05.

You may be wondering why these MRI's were done every year and the answer is that subsequent to my lower back ache and neck problems they were trying to  find a reason for them.
I did research the fact that SPMS has a faster course if diagnosed later in life. However in view of the "polio" scare at the age if 21, all these 45 years later maybe it has not been so progressive and for some people that might  be an encouraging fact, if correct. I personally think my symptoms are here to stay now and will slowly get worse. My second opinion Neuro will not commit himself to predict anything.

Re: footdrop. I have footdrop   and could trip over a grout line easily, and have done so. My Orthopedic Surgeon who recent did emergency surgery  on my left foot (whole other story after tripping) is making me a left shoe insert which will force my foot upwards to eliminate further accidents. I have avoided the brace so far.

Re: "symptoms being more motor than sensory"  -  I think so. Slight dizziness and  odd sensations in my left leg on occasions with burning, numbness and swelling none of which I feel are nearly as important to me as being able to use my left arm and leg properly. The left sided weakness comes and goes in varying degrees from more or less effective to useless,  and clumsy to clumsier.  

As an irony, it is hard to ignore the fact that I was closely associated with my best (girl) friend who was diagnosed at age  50 with MS after years of symptoms  and a former long time fiancée back in U.K. who was diagnosed at the age of 35.

Siddy1

[Quixotic1]

Wow, interesting.  You really explain well how the diagnosing doc has to put the puzzle together.  However, I inferred from your story that your first firm diagnosis was just over a year ago with SPMS.  But you had at least 4 years of abnormal and changing MRI's.  Were those MRI's ignored?  Could a diagnosis have been made earlier?  Ahhh, I just reread your post.  The lesions were written off as microangiopathy (small blood vessel disease) and your first symptoms were following your total hip.  Are those lesions now felt to be part of the MS?

That goes to the knowledge that in many/most people the disease is well under way, by the time there are symptoms.  I would actually interpret your story a little differently.  Instead of saying that the trauma of surgery triggered the MS, I would say that it unmasked it, triggered a more progressive course of a disease that was already present subclinically.  If that was not the case then it would seem they would need to give you the diagnosis of Primary Progressive.

Do you mind talking about what your course was like from the first symptoms that you now think were part of the MS? I understand why you declined Rebif if you now have a diagnosis of a progressive-stage disease.

It's too bad that PT couldn't help.  I was lucky to have an incredibly intuitive PT who spent a lot of time analyzing my gait.  I was off-balance, lunging and lurching about, and it was so tiring.  The therapy did not regain any strength, but she did have me fitted with an AFO.  Even though I have full and strong dorsiflexion of my right ankle, I still persistently dragged the foot, as if I had foot-drop.  She was able to see that I had a "functional foot-drop".  When I walked the spasticity in my right leg is dominant and "pulls" the right toe down despite my efforts to dorsiflect.  Once I had the brace, then she taught me a new cadence in which I pop my right knee flexion earlier in the stride.  I can now walk short distances with a much cleaner gait and less effort.  She was so skilled at changing minute parts of my gait for the better.

So what I benefited from was the gait training, not so much the strength training.

Yeah, when I looked at the list of tests initially done for myelopathy, I was just a little unsettled at the test for syphillis and for HIV. (Huh?  Me?)

Thanks for joining us.  One of the things we fight against here are the neurologists who do not see the art of diagnosis, but rather treat it as a cookbook.  As you read, I had been a pediatrician and never had reason to study MS carefully, so I was pretty ignorant.  My "evil neuro" is very highly regarded in this city and made it clear - absolutely clear - that MS was out of the picture.  I was depressed already and not up to "advocating for myself," so I believed him.  Only later when I continued to lose function in other parts did I learn that he had merely brushed me off.  Then I came to my own defense.

When it comes to putting together a neurologic diagnosis we must all be our own best advocates.  Has your MS neuro mentioned something that I have read - that late onset MS often has a faster course to disability, especially motor?  I notice that your problems, from what you said, are more motor than sensory.  Again, hi!  and welcome to this forum.  It is very new, but I'm hoping it will become a great source of info, debunking and guidance for people.

Quix

[Siddy1]

My spinal fluid was sent to two different top labs for complete testing of everything including Lyme Disease, HIV and syphyllis (standard tests even at my age). One came back negative for MS and one came back positive so you can't rely on them totally. The Neurosurgeon has to put all these things together.  He looks at results from the MRI's, the VER, the Bloodwork and the EMG's, together with the Spinal fluid and makes  an educated guess based on his experience because there is not one sure and positive test for MS. .

A 2002 MRI showed variability and some resolution of lesions.  My MRI's in  2003, 2004, 2005 revealed atypical T2 signal changes more consistent with MS demyelinating and axonal processes than ischemia (TIA's or mini strokes).