With my Mother's assistance - I could hardly put two words together, my Father thought I was faking, and saw no reason to help - we did manage to obtain an appointment and I was finally seen by a Neurologist at a major New York City Teaching Hospital.
After I lost total control of the complete right side of my body, had Double Vision, Blind Spots in the Central Vision Fields, Vertigo, Incoordination, and lost all Speaking Ability except for one syllable words - I was finally hospitalized for the next three weeks.
This was when I learned that I probably had Multiple Sclerosis; but, beyond having heard of the disease, I had absolutely no idea what MS was.
The doctor explained a little, but forbid me from reading up on the subject. He wanted me to rest and not worry, this made me worry all the more!!
Here I was 30 years old and being treated like a child, kept in the dark about my own health. To say that I was not a happy camper is an understatement.
In retrospect, he was a young doctor a little older than myself, who seemed to actually care, so I trusted his judgement and did my best to stay calm.
Because I was having so many symptoms come and go, over and over again, he wanted to see a full attack cycle and advised against starting any Steroid treatments, which was a great relief to me.
About a week later he told me there was a new therapy trial of Interferon-gamma for MS, which he was involved with and wanted me to enroll in. This involved more testing & interviews, which knocked me right out again.
Then, for no known reason, I started to recover very quickly and began rehabilitation. Within the following two weeks, except for an overpowering fatigue and some Speech problems, I pretty much returned to normal.
This disqualified me for the therapy trial, which I still had mixed feelings about. I figured I could rest at home and finally get to a library, so I was very pleased to be discharged.
I did have to relearn all the normal basic, everyday skills we all take for granted, which was a very slow, frustrating process at first. Gradually my walking and writing abilities returned to normal.
My speaking ability took a lot longer to regain, and my speed of word retrieval finally increased to near normal; but somehow Fatigue, Scanning Speech and the actual mechanics of Word Pronounciation remained a problem - only I seemed to notice these lingering deficits.
Family, friends, and the doctors all said I was completely back to *normal*. Even after I returned to work, no one seemed to notice my constant fight with words and trying to stay awake all day.
1986 ...Five Years Later...
Yes, all the doctors proclaimed!! It has now been five years without an additional attack... why, this means we were wrong!! It must have been a Stroke. It could not have been MS, or if it was, it was a Benign case and I would never have another attack.
Everyone told me that I should stop worrying about it and get on with my life. Duh!!!
Throughout my lifetime, I have always had very, bad nosebleeds; sinus congestion; heat sensitivity and intolerance; fatigue; tingling sensations; headaches; both hands and feet would be cold yet sweat; sudden, very quick body shakes - we called them chills or catching a draft.
My vision always seemed to get "foggy", especially in bright light or direct sunshine; always "lost" my timing and fell, going up the stairs - never going down; generally had poor hand - eye coordination; and was slow in any manual task.
Each of these things was minor in itself, nothing was ever severe enough, for anyone to ever believe there was anything wrong.
The responses I always got ranged from: you must have slept wrong, you are getting older, you sleep too much, and the always constant; "Oh, but you look so well!"
I was so very lucky!! I worked full time from Dec 1981, until July 1992. I managed to do so, by resting all weekend long, walling off family, friends, and the world. I found this enabled me to store enough energy, to carry me through most of the next week and function at work.
Even so, I still required 2 hours of quiet - no conversation at all, and muscle stretching each morning, before I could handle driving to work. I looked so well, no one would believe that I was not. I of course tried twice as hard to be the me people 'saw' and not the one I felt like.
Slowly, little by little, this became ever increasingly harder to achieve - I finally had my first MRI in 86, and the second one in 88. They both showed the same two lesions in the Pons.
The Neurologist explained, "this indicates a possible Benign case of Multiple Sclerosis and because five years have elapsed without the required second exacerbation, you will never have another attack... You should forget about MS and get on with your life."
By March of 1995, my third MRI showed lesions basically throughout the entire Brain. Within every major nerve center, ranging in various sizes from the smaller, barely visible up to 9.0 mm.
I won't cite all the jargon here, but I have it and finally understand it.
The Neurologist was quite happy, having my MS 'proven' by the MRI;
I was in total shock!!!
All the years since 1981's onset and up to 1994, I did not have another attack. Not one exacerbation, at least that is what the doctors had each told me..
Every symptom and strange sensation, I reported to them over the years, had all been discounted and explained away as not being caused by Multiple Sclerosis.
My last neurologist during this time period actually told me not to *bother* him again, unless I had Optic Neuritis, along with whatever symptom I thought I had!!
I had my doubts about this, yet there was little I could do against *professional* medical opinion. So, I continued to make whatever adjustments I needed and lived in secret fear, of having the next attack with the damage it could bring.
The neurologists had me convinced that damage only occurred during an exacerbation. Never in my wildest nightmares, did I ever conceive it could be otherwise.
The disease process of Multiple Sclerosis can and does continue, causing "Clinically Silent", Inapparent, or unseen damage (NAWM) to take place, between these exacerbations as the normal ongoing DeMyelinating Disease process of Multiple Sclerosis.
Myelin is destroyed and repaired time and time again. Yet, because of the great redundancy in the Central Nervous System, it is generally able to make repairs and reroute nerve messages around the damage without any noticeabe deficits.
Little by little each of these attack and repair routines takes a toll. The damage MS produces, slowly accummulates over time, for most of us. The cells which make Myelin grow too slowly, to keep up with the MS disease process.
Eventually the CNS can no longer ReMyelinate Neural tissue, and Astrocyte Cells begin producing scar tissue.
They wrap themselves around Axons - the sclerosis - in place of Myelin, protecting the Axon and preserve the Neuron's function.
We know Myelin has two critically important roles in the CNS: It insulates Axons (maintaining closed electrical circuits), drastically increasing the speed (velocity) of generating and conducting Nerve Impulses. Myelinated Axons use much less energy, thereby producing less fatigue.
Because, the current is able to jump along the Myelin from contact point to contact point (Nodes of Ranvier), which act like electric repeaters, refreshing the current (Saltatory Conduction).
As opposed to having to physically travel through the entire length of the Axon, atom to atom (Action Potential Transmission).
Speed is absolutely essential, as everything in the CNS is widely dispersed and inter-connected. An action cannot be ordered or reacted to, by the higher Brain, if part of the message is late, garbled, or never arrives.
Feedback is absolutely critical in any network, and more so in a centrally directed one. Much like the way the internet sends a page or document - in many different packets or pieces of data - which must all be received, for the network to complete its task.
I know it sounds strange but, this is how the Brain actually functions. Everything is co-ordinated, checked, with override enabled and Sensory feedback is the essential key.
These mis-sent signals are interpreated as Pain by the higher Brain and can overload Neurons. The Thalamus will actually shut down, to prevent itself from burning out!
Once this happens, incoming pain signals are no longer stopped by the Thalamus and continue on to the higher Brain.
This causes most of the unexplainable pains we have - Pins & Needle, Burning (Paresthesias), and the other 'strange' (Paroxysmal) sensations.
A DeMyelinated Axon can still transmit signals, only they are much slower, use more energy (easily fatigue), and eventually fail altogether.
Without its energy-saving Myelin coating, all Neural tissue is more heat sensitive and prone to stop transmitting, when your core body temperature is increased by just 0.5°C.
However, function returns to *normal*, when your body cools off and the Axons can resume transmitting signals.
What happens is, Axons generate electricity less efficiently at higher temperatures causing Nerve Fiber Fatigue, which produces a Conduction Block.
This is because, at higher temperatures Sodium channels close faster than their electrical counterparts (Potassium channels) and increasing temperatures, decreases the time current can flow and thus decrease total current.
This causes them to require and use more energy (ATP), while generating less and less electrical current.
When there is DeMyelination, Neurons would be damaged at these energy draining higher temperatures, if they continued transmitting Nerve Impulse.
So they block (Conduction Block) all additional Nerve Impulses, until they cool down, rest, and have time to recover (self-preservation). Afterwards, they resume transmissions and function returns to your *normal* baseline.
It took a very, very long time; before I finally understood, most neurologists believe MS to be only a physically devastating disorder.
I had to fight, argue, and finally get a Psychologist and have a NeuroPsychological Evaluation done, to prove MS had produced other deficits besides the obviously visible, physical ones.
Most people still think that if you are not in a wheelchair, your MS is very mild and you are lucky. All the invisible problems MSers have, they do not see and will not allow for.
In today's world it seems, only the cardinal extremes have any value. As if everthing knowable was already known and there are no more mysteries or unexplained events remainning... You are either well or sick, rich or poor, educated or ignorant.
Sadly, society has become dependent on labels, relying on their sharp lines of demarcation to shield itself from the liability inherent in opinion and belief.
The real horror is most people believe only what they can see, touch or feel. :(
Regardless of their credentials and warm-hearted feelings, the reality of living with Multiple Sclerosis is totally inconceivable and unknowable to all Non-MSers; because they have never lived with the doubts and fears MS imposes.
So, be really lucky. Use this time learning all the possibilities that may befall you and then you will be prepared for whatever life brings your way. You will continue living as we all have - adapting and re-adjusting as we go.