clivech 23/05/17
Last reply 9 months ago
Doing research

Hello everyone:
I’m doing some research for a company that is hoping to launch a new way to boost the immune system in people who have chronic illnesses, including MS. I’m trying to better understand what the real benefits of having a stronger immune system would be to those who are suffering long-term with MS. Can anyone give me some insights? I realise there is no single experience of MS – indeed, it clearly has many, many individual manifestations. (I have an autistic son, so know what a spectrum of symptoms can mean.) But what would it mean to you to have a stronger immune system? What would change? How would things be different/better?

Many thanks indeed for your help with this. I hope I am not intruding or asking the impossible.

Clive

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stumbler
9 months ago

@clivech , I’m not sure you’re going to get much help on your research from the MS community.

You see, MS is an auto-immune condition, where our immune systems attack our Central Nervous System (CNS). The majority of us will be on expensive immune-suppressant treatments.

It is therefore not in our best interests to boost our immune system.


clivech
9 months ago

Thanks for your reply, stumbler. I hear what you are saying, and I do understand that MS is an auto-immune condition, and that the immune system is targeting the wrong cells. But what if you could “train” your immune system to work the way it’s supposed to, and not attack your CNS? So the “boost” takes the form of a better, not more indiscriminately active immune system? What would that mean for you? How would that change things?

Thanks!


stumbler
9 months ago

@clivech, I appreciate your comments, but the medical fraternity have been continually working on things to slowdown the progress of MS and help us tolerate the symptoms.

We would not subscribe to any medication, supplement or therapy unless there was empirical evidence to support it. We’re used to big pharma companies boosting their profits from MS, but that is considered an “acceptable” facet of capitalism. So, we’re wary of seeing our own money being spent on pink elephants.

Sorry, not cynicism, more like realism.


clivech
9 months ago

I think we’re talking at tangents here. I’m not touting any pharmaceutical solution, and this will not cost you anything. What I’m trying to understand is what it would feel like to you, as a patient with MS, if your symptoms were extenuated by a better immune system. How would the improvements manifest themselves in your life? That’s all. I’m just trying to understand the experience of the condition better from your point of view, and what form improvements might take. If you have a moment to address this, I’d be hugely grateful. Thanks!

Clive


stumbler
9 months ago

Hi Clive , not wishing to get over-dramatic, but having MS is like living life, whilst a fair proportion of your being has already died!

Symptoms that have to be managed, or tolerated, include :-

Pain (neuropathic)
Muscle weakness
Visual problems
Incontinence
Fatigue
Sexual Dysfunction
Cognitive problems
etc., etc..

There’s a full list here :- https://www.mstrust.org.uk/a-z/symptoms

Improvements in any of these areas would be gratefully received and would improve our overall quality of life.


katy79
9 months ago

@clivech

I’m with @stumbler here and agree I’m not sure how people with MS can help with your research.

– a “better” immune system in the context of my MS means having an immune system that doesn’t eat my brain/spinal chord. For this purpose I’ve received heavy dutu and expensive immuno-suppressant drugs (lemtrada) which are designed to knock out the naughty white blood cells in the hope that they grow back without this carnivorous desire. My hope here is two fold. (I) My immune system stops eating my brain and so no new damage is caused; and (2) once this has happened, by body can focus on repairing some of the existing damage. In short, I hope the drugs will stop my MS getting worse (or will at least slow down the rate at which it does so) and that it may allow me to recover from existing damage. For this I am prepared to suffer a compromised immune system and avoid immunity boosters

– there is a secondary point, which is that people with MS seem to suffer flare ups of their symptoms when the suffer from an infection or virus (e.g. cold or UTI). If there was a way of boosting the immune system to help prevent these everyday viruses/infections taking hold without stoking up the bit of the immune system which eats our brains that would be fabulous and could alleviate some flare-ups in symptoms. Sadly, until the cleaver scientists manage to work out which particular facet of our immune system it is which is causing the harm (t-cells, b-cells, memory cells, something else?) this doesn’t seem possible. Once they have done this we will hopefully be that much closer to a cure for MS (the Holy Grail!!) – at which point we will no longer have a chronic illness!


clivech
9 months ago

Thank you so much, stumbler and katy79! You have really helped. I know it may be stating the obvious to you, but as I try to understand how a better-trained immune system would help you, these reflections on your experience of the condition are invaluable. I know there is a whole range of symptoms that can be associated with MS, but that doesn’t help me know how individuals would experience improvements in the way their bodies fight the disease. So I really appreciate your taking this time to help me understand MS better than a textbook or Wikipedia could do!

Clive


hippiepeacefrog
9 months ago

@clivech

I think that I understand where you are coming from. My husband is currently fighting Advaced Stage 4 Non-Smallcell Lung Cancer. When he went in to remission 7/16, we thought WHEW! Kept of Avasin as maintenance chemo, which kept us on a schedule of CT’s and MRI’s and PET scans. His TUMOR went away. In November after the first CT, they found more lesions (MM not CM tumors this time), he had two in his upper left lung lobe, and 2 in his right lung lobe as well as a larger lesion on the upper lobe of his liver. It was suggested to start Opdivo and see if that would work, as the only sample they could get of his lung cancer, due to it surrounding his pulmonary artery, was from a small lymph node in his chest as the lymph node involvement gave us our advanced stage 4.

Opdivo, as I’m sure you’re aware, is immunotherapy, but he was still considered immune compromised. Unfortunately, after a hospital stay in January and having a bronchial scope to zap the offending capillaries(which fixed the coughing up of blood), the next CT in February happened and there was now further involvement. There were more lesions in his liver and now had lesions in both kidneys. We immediately started the same chemotherapy as last year. At our next CT, last month, all of the lesions that had appeared during Opdivo have been resolved and all others are shrinking as well, the largest original lesion on his liver of 26mm is now down to 12mm! AWESOME, right?

My point in that is that because our sample was so small, they couldn’t type him for anything but the most “common” genotype of lung cancer and Opdivo was a shot in the dark as it is all new to the masses as it is as of last year available to the masses so to speak. They couldn’t effectively type him.

And even though I’ve just been diagnosed as of 5/11/17, I’d be happy to speak to you privately, especially as I’ve had other thoughts about HIS treatments and other challenges. My account is linked to my Facebook, please feel free to contact me.

Stumbler and Katy are right though…it’s hard to keep track as there aren’t many labs that develop the specialized drugs that I hope to be on sooner rather than later, because coupled with his diabetes and his cancer, along with my back fusion and now MS, I now have to wait until late June or maybe July to get on meds, and let me tell you how difficult coping without help or empathy is very hard when being attacked not only by MS, but passive agressions as well. We all have to be individually typed to our meds, which is why it is so important to journal and keep up with symptoms. (Anyone who is an apple user, they are working on Android coding, should look in to the app Day One, I’m finding it very user-friendly, helpful, and relevant. Check out their website at http://dayoneapp.com/ it’s worth a peek at $4.99.

Hope I’ve helped and not hindered. Also check out MSlifelines.com , it too is very user friendly and informative and you might be able to obtain some useful info from there.

Good luck!

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