MS is scary and you have to be pretty tough to deal with it.
Sometimes I think I’ve cheated it, got away with milder symptoms, not such drastic life changes.
Then I remember the falling over, being sacked for having MS, the life-long partner scarpering at the first signs (garbled speech and wonky walking).
So, yes, on the surface, I seem ok. Normal, even. Whatever that is. Then I remember my third course of Campath, due in two weeks. Three days in hospital.
Alone.
Apparently my MS has ‘reactivated’. Which I knew after the bad relapse in the Spring, but it’s always hard to have it realised through a scan, with a bright, enhancing lesion.
Anyway, after years of utter despair, I have come to terms with this disease. I think.
It is what it is. I was chatting to my mum earlier and she was telling me about my dad and his MS. There is no comparison. He died before my fifth birthday, aged just 35, and one of my earliest memories is of him at my fourth birthday trying to eat ice cream. And failing.
And now I have MS.
Is it a burden to have a parent with MS? I am now that parent, with MS.
I feel a compulsion to try and explore every possible treatment. I have signed up to all the PhD research, I have put my signature to more blood tests for MS research. I make myself available for future courses for people with MS.
Is it enough?
I feel there’s nothing we can do that is enough. We each do what we can do and be with it, accept it.
A very good point. I think as a parent we automatically feel guilty about everything anyway! I know the Teenager has struggled, especially as it happened at a difficult time in his life and I’ll always feel sorry about that 🙁
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Amongst that impressive list the joy of living your life would do well to be included – do what you’re doing, you do make a difference; we all do so be kind to yourself too. x
Lovely comment, thank you!!
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greetings and thinking of you as you prepare for hospital.Th ere is no doubt at all that you are a great inspiration in helping many to cope with MS.Thank you and I know it is not easy.Am there for you.Also congratulations to the teenager you must be proud of him
Nanette
Thank you so much! A lovely thing to say 🙂
I’m so, so proud of The Teenager – we got there in the end! He starts his new course tomorrow and has taken up rugby training again. It’s all good. Apart from the extra washing, lol.
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‘It is was it is’ good point. Feel guilty all the time. My MS hasn’t needed treating yet (feel guilty) Tired mum of nearly 5yr old. Starts school next week. Busy A&E sister. Wife, daughter and friend. Just beyond tired at the end of busy week, everything hurts/aches. Feel guilty cause not able to do something 110%. But…. Never mind, carry on, “it is what it is” must remember the phrase.
You won’t be alone in hospital, we’ll be with you 100%. Keep up the good writing. Xx
I’m so with you – the guilt is never ending. And I know totally what you mean about guilt re treatment (or not). I feel very selfish for feeling sorry for myself when I know how ‘lucky’ I am my MS isn’t worse. And that I qualify for such amazing treatment.
I love what you said about you guys being with me in hospital! Thank you, means a lot. I will be all on my own in a ward at night (you stay overnight on the neuro day ward, gah) and apparently I’m the only one booked in. Will be weird!
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What neurologist would tell you that MS has not needed treatment?
Unless its benign MS I’d be getting a second opinion really (really) fast especially given the new findings that most MRI’s dont pick up well on slight changes in exacerbation’s.
Australian research firm using computer forensics combined with computer imaging found 4 in 10 people who believe or have been told their MS is not active are having exacerbation’s “aka: Silent MS” and do not even know it nor do radiologists pick up on it.
Luckily for me, lol, my MS was so active, I qualified for treatment.
Sadly, the same wasn’t true for my dad who had the misfortune to have had MS back in the 1970’s.
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I Know EXACTLY how you feel which compelled me to write.
I have has MS 8 years. For years on end I dealt with it using LDN pretty much. My Fiance’ finally convinced me to go on a DMT, Tecfidera. So I go on it. Not a single side effect. Then I ramped up to the full dose and BAM, headaches, side splitting. Worse than any migraine I have ever had. Even spent time in emergency and it was NOT going away.
So, came off Tecfidera, MRI done. Results come back. My MS was active while I was in the MRI.
Finally getting the headaches under control. Neuro doesnt think it was the DMT, so, wants me back on Tecfidera.
We chose Tecfidera as using LDN (Low Dose Naltrexone) is not a problem as it can be with other DMT’s. LDN stopped ALOT of my symptoms, bladder, bowel, to a level fatigue, I have not in 8 years since I have been on it gotten even a cold or flu. Rid my depression, the works. LDN worked some miracles.
MS has taken alot from me.
Few months back late June was at a MS dinner sponsored by Genzyme and the speaker was AMAZING. So she inspired us (my fiance’ is a programmer) to build out a community web for people with MS. Just deployed 2 weeks back. We are still doing alot of work on it with much to add.
But I understand where you are at completely. I was pretty happy I had no side effects from Tecfidera and was like, “Cool. For all these years I was scared of the DMT effects and I was scared of nothing”. Then, BAM, like I was being clubbed in my head the headaches were so bad. That sank me down pretty bad.
Am so pleased to hear you had a good outcome!
I’m pretty happy with my Alemtuzumab treatment, also from Genzyme.
Can’t complain, it’s slowed down my relapses and now I’m about to go in for a third course, I’m even more hopeful!
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In respect to your article,
I have learned alot (alot) about MS and even more than past few months in building MSUnites.com.
Stat clear of caffeine, smoking, alcohol, dairy, red meats, processed foods, stick with gluten free items. 8 12 ounces glasses of spring water (not tap water) daily.
Be aware when you need to rest.
Use a nutri-bullet drink when you need a kick of energy. I do three a day. Exercise.
I use a Total Gym, found one on craigslist years back for $75. Low impact, does WONDERS.
MS is at LEAST a 50-50 deal. While disease modifying treatments such as Campath (Lemtrada), there is NO DMT that supplements normal health care/lifestyle. That is just as important as any medication some believe more so.
You have RRMS and are on Campath? Did you try other DMT’s before it?
In fact, my programmer fiance’ came up with his own theory, he is rather a “Reverse engineering genius”. He’s talked with a few researchers and they have found it rather interesting angle.
That being, yes, the immune system is going awry but not in the way most think.
I do have a Nutri-Bullet and we both use it a lot!
Aa for RRMS and Campath. I was diagnosed with highly active or rapidly evolving RRMS. My father had PPMS and was diagnosed at 28. He died at 35. So when I was diagnosed with this highly active form of MS, I accepted Campath willingly. I might have made the wrong decision. I don’t know. My main concern, as a single, divorced parent, was being physically active to enable me to get The Teenager into Sixth Form.
It worked for me. It might not be right for other people.
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Since it was highly active that makes sense. Things are different in the UK as well. Here in the US Lemtrada (Campath) was just approved scant time back. Its basically required that one try another DMT and have it fail before Lemtrada is even considered.
I am sorry to hear about your father.
MS in men is quite different than women. It tends to be more aggressive and ratio’s are 3:1 (3 women to 1 male get MS).
When one considers that one must ask why? Physiology is certainly in the mix.
But again, consider the thought of the emotional differences in males and women. Women are far far more prone to the emotional stressing extreme’s than men and bam, there sits that really HUGE statistical ratio.
However, mens emotions are more focused and profound in long lasting terms. Hence perhaps MS tending be more progressive.
There are loads and loads of variables when considering the disease and there are other forms of sclerosis. Some that the immune system just assaults anything / everything, bodily organs.
As I noted, my fiance’ is a programmer and he did alot of programming on neural network related software. The brain is very much like a computer in many many ways. Infinitely more complex and faster. But VERY similar in structures and logic gates. In learning about MS he was shocked to see the attacks happening on connectivity tissues and NOT the actual nerve cells.
He actually said he’d love to have the time to get three or four of his old programmer friends who worked on that stuff together and see if they cant come up with a MS computer model.
He claims that he thinks they could albeit rudimentary as in comparison to the Central Nervous System.
He said, “Think about it. The Active Immune system is attacking transmission tissue and the result is breaking communication” WHY is it attempting to BREAK communication. What information is the immune system receiving that has it believing that their is a antigen (a foreign problem) impacting that communication system and / or region.
A computer virus the computer has no idea is an antigen. To it the virus is just program code to be run. Doesnt care what it does or how. But, the virus scanner (immune system) has a database, the definitions file in a PC virus scanner and the immune system has its database in memory within the active immune system.
The range of emotions and / or stressing functions on the CNS resulting in exacerbation is ENORMOUS so he said simulating that would be out of the question. But he said if a few simplistic models were established such as “High stress” and say “extreme depression” and mixin’s of other prospect catalyts such as heat, extreme fatigue that is then forced to do more. He believes that in a computer model MS could be simulated. Where the equal of a “virus scanner” with a knowledge base could be instantiated and attempt disrupt communications between neural network nodes and “symptoms” would result as anomalous outputs. So lets say its a complex reoccurring formula applied to the neural network program code. A simple example would be “find all prime numbers, numbers divisible by only themselves and 1”. Simulating that process in the same way the brain works as a very simple one.
I have no clue what good it would do to simulate it unless it could somehow be scaled to a far far more complex level.
But he said clearly to him MS is not an anomalous disease as most folks believe it to be. He said from an engineering aspect it cant be. Its target of attack is ALWAYS the same. While regions may differ in the CNS the target is ALWAYS the same, connectivity communications tissues.
He says, “Thats where research ought be starting and reverse engineering things back downwards to the immune system instead of from the immune system upwards”.
Its like “air to air” missiles. Engineering wise they are useless against say a tank. They are specific and their actions are specific. In order to understand how an air to air missiles logic is functioning (or going awry) one starts from the top down, not the bottom up. Engineering is from the bottom up. Understanding existing criteria is bottom down.
Astrophysicists do not explore the fabric of the universe from the bottom up. That limits reference. They do if from the top down.
Research (he says) in MS is all seemingly bottom up instead of top down. WHAT is going on in a persons physiology and psychology that is resulting in the “Virus scanner” (immune system) to think it has to attack communications lines.
Note, thats not SOURCES. Sources would be the nerve cells and not the wiring between them.
If we are to assume that the immune system is actually NOT malfunctioning then what data does that bring forth?
It would mean that the immune system is attempting to STOP communications, not making a mistake at all. It believes it HAS to STOP communications. Why?
It has mistaken stressing related activity as a viral or antgen issue. It does this ALL THE TIME, we have a fever, its attacking that and fever also places stress on our thinking for example. At a certain TEMPERATURE ( he claims this may well be another key) the brain goes completely haywire, we end up delusional for example at a temperature of 104. Six little degrees. Thats not muscles, its not skin, its not the millions of nerves all over the body. Its completely CNS is at 104 and things melt down.
HEAT is one of the “nasty’s” of MS. You dont tend hear, “I am cold and thus my MS makes me feel exhausted”. But heat, bam, there it is and this happens with fever as well.
According to him “Top down engineering” it, these are all keys (data) into what is REALLY happening and I must say, it makes some sense.
For example. He said take Optic Neuritis, common,, one of the most common symptoms of a flare-up. Why? Science says, “We dont know” even though the optic nerves are predisposed to near complete repair in time.
According to my little programmer he said it makes complete sense. The eyes are the input to things that can cause great stress. Hubby’s in bed with another woman. It is a main input source. He said, take a PC firewall program. It watches the network port of data coming in. The moment it sees something that should not be there it attempts interrupt it.
He claims its surely ever so complex but that it hardly seems like the immune system is “mistaking” things, its very targeted in what it is attacking with MS as compared to some forms of sclerosis that seemingly randomly assault tissues.
He said virus scanner do this as well, called “False positives”. They mistake a program that is not a virus for a virus. But its actually NOT due to a flaw in the virus scanner but instead a “condition” being met.
What an interesting comment, thank you so much for posting!
It would be good if your fiance managed to get funding to investigate his hypotheses further?
Campath was the first option given to me, along with Tysabri, but the yearly infusions fitted better with me than monthly ones 🙂
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