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I am sorry. I didn’t know you have MS, and don’t understand what it is

“Oh, I am sorry.”

How often do you hear that? I am not referring to a normal everyday apology. No, I am talking about when someone hears, for the first time, that you have multiple sclerosis, or other serious illness or disability.

Now, don’t get me wrong, I am not criticizing the other person’s response. It seems to me to be as automatic as answering “I am fine thanks,” even when you aren’t. It’s just the way we are.

understandWhat they are really trying to say is that they are sorry to hear we have MS.

However, the “I am sorry” reply made me think about people’s attitude to, and what they understand about, multiple sclerosis. Indeed, if I think back, I must admit that I knew nothing about MS when the neurologist made his diagnosis 15½ years ago. Everything I now know about the disease, I have learned since then – much of it from experience of myself and others.

Trying to explain MS, what we go through, and the fact that we all experience it differently, is not easy. So, if we who have it find it difficult to put into words what we go through, just imagine how hard it must be for someone else to understand.

Understand the challenges we face

Think of the various challenges that we may have to deal with as part of MS. There is anxiety, bladder problems, depression, fatigue, foot drop, hearing loss, and heat sensitivity, memory loss or brain fog, muscle spasms, and muscle weakness.

Then there is memory loss or brain fog, muscle spasms, muscle weakness, numbness and tingling, pain, sexual dysfunction, and vision problems.

Of course, we don’t individually experience all of these.

Also, to the uninitiated, MS is MS. They tend not to know about the relapsing, primary progressive and secondary progressive types of the disease. Furthermore, even if they have heard of the names, they are unlikely to know what they mean. And that offers us another opportunity, and that’s an opportunity for us to head down another avenue of explanation.

Some of you may tire of answering questions about how you are affected by, and how you deal with, the problems thrown up by our unwanted companion. That I can understand, but I will continue to do my best, as someone with MS and as a journalist, to answer questions that anyone may have.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.HH

6 Responses so far.

  1. Linda La Rowe says:

    Your post caused so many instant reactions in me…as I had RRMS 20 years and then crossed into SPMS 14 years ago. While in RRMS, I felt lucky to have a disease that went into remission (it could be something so much more serious) and I really didn’t identify with the disease as a main event. I was able to work as a stock broker full time and even worked a second job 9 years of that time just for fun. I had learned to manage around the disease by heading episodes off by staying away from my triggers (heat and exhaustion, emotional and financial stress). Then I crossed into SPMS. I had no more episodes (exacerbations or relapses) but started getting slowly worse. That’s when I could no longer not identify with the disease. I would share with people around me that I had MS…only to let them know I wasn’t drunk and out of control. It was embarrassing when I couldn’t meet my husband on time because I had to sit and rest in order to walk to meet him at our arranged meeting sight in the mall when shopping, for instance. It wasn’t like I kept it a secret before…it just wasn’t a big deal. Now, I am not saying that I would come back 100% after a relapse…there was always some residual that I was aware of, but from the outside, it wouldn’t be so apparent. Chronic bladder infections, chronic constipation, loss of feeling in my fingers, balance challenges, lack of acute memory, loss of ability to speed read, not being able to type normally, not being able to form a whistle…I could go on, but you get the idea. I finally had to ask for help and that was certainly different and humbling. I have just discussed what this disease has been like from the inside for me. It has been a major impact to those around me. It has impacted my children now grown and successful, but more my husband. He has had to take over the cooking and I have had to relax the need to have my house clean to my former expectations, for instance. AND I have had to accept that I have a serious and life limiting disease. Along with this, I have to admit that I have had a very unique advantage in this journey. I had the good fortune to have met and personally know Dr. Raymond Damadian, original inventor of the MRI. He asked me to join an MS study almost 6 years ago. It was joining this study that gave me my eyesight back, gave me back the feeling in my abdomen, no more chronic constipation and I haven’t had a bladder infection in almost 5 years. I can drive again, I can type again (although with many bad habits learned by not being able to type normally) and can speed read again. This is notable because I had been SPMS for nine years when joining his study. I know of no medication (DMT) that can give patients back lost abilities. All is not perfect…I still have SPMS but my approach is to identify the cause of a specific challenge, rather than just accept it. Dr. Damadian and Dr. Rosa feel MS as well as other neurodegenerative diseases relate to head and/or neck trauma. This creates blocked CSF flow in the cervical spine. The blockage causes CSF to leak from the ventricles in the brain. It also creates way too high CSF pressure (intracranial pressure) in the brain. This pressure restricts the blood flow (CCSVI) and probably the lymphatic flow that has recently been discovered. If you open the CSF flow, you stop the leakage, and if you stop the leakage, you stop the disease progression…and your brain tries to heal itself. I was a perfect example of this. I had scoliosis in my cervical spine, my CSF had 4 blockage points, my atlas disc was diagonal, and my C2 was rotated. Dr. Rosa noninvasively performed an image guided atlas orthogonal alignment which opened my CSF flow and perfectly aligned my cervical spine…I felt nothing and wouldn’t have believed it if I hadn’t seen the scans myself. My challenge has been to deal with the scoliosis transferred to my lumbar region. I can no longer stand up straight and have trouble walking. I have gone to light massages, heavy massages (rolfing), myalfascial release therapists and others thinking they can help me over the last five years. Finally, I have convinced my doctor to refer me to someone who can identify a tethered spinal chord, and if so, can release it. I will see that neuro surgeon in February. If I can stand up straight, I am sure I will be able to walk better.

  2. Linda La Rowe says:

    I just want to mention a few other points to my last post. We are all different with MS, but there are many similarities. For instance, you mentioned children with MS. One cause may be when children are delivered with forceps. Their heads are yanked and twisted aggressively, possibly damaging their cervical spine. This is one focus that has been ignored. Not all patients with MS can be corrected as I was with atlas orthogonal alignment. There are many challenges and more research needed to correct other issues. Dr. Damadian uses software and hardware that allows him to see the CSF, see the blockage in CSF flow, calculate the flow rates and pressure in the brain, and see the leakage as it occurs. He can also see the restricted blood flow, and see the blood flow return when the CSF flow is opened up. My friend with MS had so much leakage of CSF from the rear ventricles in her brain, that it pooled at the base of her brain (previously diagnosed as brain atrophy) pushing her brain forward asymmetrically. Now, how do you correct that? A lymphatic system might help to alleviate this problem if it worked. Clearly, there are more challenges to address…but if you cannot see the CSF, the leakage, or are willing to look at research being done by Dr. Damadian and his team, it will take more time. I get impatient but also know the reluctance of BIG PHARMA to acknowledge this possibility, to acknowledge CCSVI and the need for researchers to protect their own research, not pooling the pieces to this puzzle of MS.

    • ian0811 says:

      Hi Linda, so far as I know, there is no valid data to suggest that CCSVI actually works. It remains an unproved therapy.

      • Linda La Rowe says:

        I realize that CCSVI is challenged by the medical community. The problem is that it doesn’t always help MS patients. Some people experience improvement, but it doesn’t last; some people experience no improvement; some people experience lasting improvement. Rather than. concluding it has no validation, I wonder why it gives some patients improvement? I have one friend with MS who experienced improvement that lasted about four months. Why? This happened before I joined the M S study with Dr. Damadian. I have another friend who has seen major improvements that have lasted for years from liberation therapy. She then joined with Dr Rosa and after treatment, experienced a return of.blood flow which had stopped in her left jugular vein. I understand not accepting blocked CSF flow because unless you have Dr. Damadian’s software and use an “Upright MRI” scanner, you can’t see CSF. BUT, researchers can see restricted blood flow in the brains of patients with MS.

  3. Liz Murby says:

    Each one of us unique: how could you?!

    • ian0811 says:

      Hi Liz, sorry but I don’t understand your comment. I twice said that we are not all the same and experience different symptoms. I also said that I understand if you tire of answering questions.

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