Tag Archives: Multiple Sclerosis

MS Medications and My Thoughts

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Multiple sclerosis (MS) medications can cause a range of side effects, some common and others more serious. I have been asked mostly by neurologists and some people often why I do not take MS medications. After much extensive research here is a list. My question to you, is it worth it? I have been prescribed Avonex, Copaxone, Prednisone, Aubagio and Kesimpta. All of these had many side effects that harmed my liver, kidney, weight gain and gave me diabetes. The first 5 side effects I have experienced every time I took the meds.

  • Injection site reactions: Pain, redness, swelling, or itching at the injection site, especially with medications like interferon beta. I only experienced this with Copaxone.
  • Flu-like symptoms: Fever, chills, muscle aches, and fatigue, most of these I experienced from the meds taken. 
  • Gastrointestinal issues: Nausea, diarrhea, and stomach pain. Yes, often.
  • Skin reactions: Flushing, itching, and rash, which can occur with various medications. 
  • Headaches: A common side effect with many MS medications. An extreme side effect that often caused me to throw up.

More Serious Side Effects:

  • Liver damage: Some medications can cause liver problems, which may require monitoring. I have this issue and must be checked often through blood work to make sure I am ok.
  • Depression: Certain medications, particularly interferons, can worsen or trigger depression. People ask me this all the time. Depression or just extremely tiredness is my question to the doctor and people.
  • Increased risk of infection: Some MS medications can weaken the immune system, increasing the risk of infections. Yes, it is very common and causes me to be extremely cautious around people. We do have people that go out in public sick and contagious. I am leery going out in public.
  • Heart problems: Some medications may cause heart issues like heart failure. I have no issues now, but it is on my mind ALL the time.
  • Cognitive impairment: Some medications can affect thinking and memory. Not yet for me but again wouldn’t be surprised.
  • Progressive multifocal leukoencephalopathy (PML): A rare but serious brain infection, primarily associated with certain medications. Pretty scary symptoms!
  • Cancers: Some medications have been linked to an increased risk of certain cancers, including breast cancer. Yet, neurologists still push to take medicine regardless of the side effects. A more recent drug called Ocrevus – the side effects are cancer risks. It makes me really wonder why people take this. It is like playing Russian Roulette.

Specific Medications and Side Effects:

  • Interferon beta: Injection site reactions, flu-like symptoms, liver problems, and depression. I have elevated liver enzymes from the Avonex drugs.
  • Glatiramer acetate: Injection site reactions, potential for serious complications like Nicolau’s syndrome (intense pain at the injection site, followed by skin discoloration (often reddish or bluish), and potentially progressing to tissue death (necrosis) tell me – who wants this? I took Copaxone and stopped because I did a lot of research and did not like how I felt and the bad redness and rashes from it.
  • Fingolimod: headache, back pain, abdominal pain, diarrhea, cough, and flu-like symptoms. I had these symptoms a lot. 
  • Diroximel fumarate: Nausea, diarrhea, abdominal pain, and flushing. 
  • Ocrevus: Infusion reactions (itching, rash, flu-like symptoms) and increased risk of infections and cancer. This drug scares me, I refuse to even consider it.
  • Corticosteroids: Insomnia, increased blood pressure, increased blood sugar, weight gain, mood swings, and fluid retention. I have diabetes and high blood pressure from steroids. I have pretty much all of these symptoms.

Important Considerations: Not to be sarcastic or make people think I am not caring, but for years I have talked with my doctors and neurologists, and their responses are: “yeah we know, but it is treatable by taking other medications to help with the side effects”. My thoughts, – I have become a pharmacy with all these drugs. Is my body harmed? These important considerations should include do your research, advocate for yourself, if you do not understand – ask someone until you receive the answer you need. For me, I was never comfortable with the healthcare professional’s response and when they become annoyed and not so nice it raises “red flags”.

  • It is crucial to discuss potential side effects with a doctor before starting any MS medication. 
  • Doctors should monitor patients for potential side effects during treatment. 
  • Many side effects can be managed with medication adjustments, supportive therapies, or lifestyle changes. 
  • Patients should report any new or worsening symptoms to their doctor promptly. 
  • Some side effects, like infusion reactions, may require immediate medical attention. 

Always be cautious, do your research, and make decisions based on research and answers you have before you decide anything. To this day, I still am not comfortable with the MS medicdines that are available and I do not take them. Thirty-four years with MS at 61 years old, still keeping on.

Support Groups

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What are your thoughts about support groups for something you have been diagnosed for? Over the span of 34 years living with MS, I have joined and left a few MS support groups. I never felt good about reading negative comments about MS and believe me there are so many comments it becomes depressing and shows no hope. I expected some negativity, but this last one I am in just literally blows me away and I must stop reading the comments just to keep my sanity and to stay positive with this uncurable hard ass disease. I am still debating if I should leave the group or just stay in it in hopes of reading some positive posts. As of today, there were none.

Looking back on my diagnosis in1991, (please understand this is just bits and pieces, my journey is very long) I remember being so confused (I was still seeing double vision that was going on one month, and I was just not feeling well). I was angry because I did not understand what was happening. The neurologist prescribed 80mg of prednisone, gave me a 2-page folded pamphlet to read. The neurologist that bluntly diagnosed me told me to go home, read the pamphlet, and come back in 3 weeks for a checkup. No support, no encouragement, no optimism – just flat no emotion in his voice on the advice. He never showed the MRI scans or thoroughly explained what they saw on the film. Today’s neurologist’s diagnosis or explanations are a little bit better in terms of explaining, but not much. This was the beginning of my long journey of trying to understand what MS is. Back then the internet was just becoming popular. There was no definite research on MS on the internet until a few years later. Explaining my diagnosis to my family was tough because I didn’t understand. My mother especially wanted me to explain on the TTY (A TTY device has a keyboard for typing messages and a screen to display incoming text. When a TTY user makes a call, their typed message is converted into audio signals that are sent over the phone line. The receiving TTY, or a relay service, then converts those signals back into text for the recipient to read). I couldn’t really talk to my mother because I was seeing double vision. Reading her messages was difficult. My sister had to voice the words on the TTY to me. It’s comical as I am writing about that today, Deaf mom, using a TTY, me seeing double vision trying to read and type, my sister hovering over me and the TTY voicing what was coming up on the screen because everything was double. We were all stressed that day.

I never met anyone who had MS until I moved to the Orlando area. Some rude awakenings there with this person I met at work and learning about other people with MS. It was never a positive experience, and it was always negative and depressing. I learned for myself that if I had to live with this disease, my life needed to be as normal as I could make it, and people’s (especially family and friend’s) negativity was not my problem nor was it accepted. A very hard and lonely journey especially when someone does not understand. The last few days while resting and recuperating from the recent 11-day hospital stay I became very depressed, and my anger returned after reading a lot of the group comments. Today I am reading and starting to decide that this group is just not helpful for me. It is strange because that group has a large MS following. I am guessing that people thrive on negativity.

Looking back on the years I feel extremely fortunate. My exacerbations were not many, and the recovery time was 3-4 weeks with a lot of rest, positive attitude and healthy food. Things did return to normal. I learned to deal with the nasties of life and people. I had some good turnouts and some not so great. It is life regardless of the disease. The nasties will always pop up with family and friends. There is nothing that can change that other than my attitude on how to handle it. I know if I react, I will get sick. I must remember what is important “me” or what other drama that comes with family and friends.

Am I Depressed?

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The definition of depression in google: “Depression is a mental health condition characterized by persistent sadness, loss of interest in activities, and other symptoms that affect daily life. These symptoms can include changes in mood, sleep, appetite, energy levels, and concentration. It’s crucial to seek help if you experience five or more of these symptoms for at least two weeks”.  Interesting explanation. So does this mean I have been depressed ever since I was diagnosed on that day March 1991 that I was told, “you have MS. Neurologst says, “Here is a pamplet on what MS is. Go home and read up and take 80mg of predinsone and come back to see me in 2 weeks”. I remember this day so clearly. I had such a massive migraine and it was in the high 90’s and the person who brought me had no AC in her car. Made me double sick. On top of that she ordered McDonald’s for herself and the aroma from the fast food made things so much worse. When I got home I threw up so violently from the smells, the heat, the massive pounding headache, just so confused because I was still seeing double vision. I couldn’t focus. The neurologist was not helpful. Over the years, I find that this still rings true to this very day.

I met another person in a job i was hired at. Couple of very strange things. One on the application, the question asked was – do you have multiple sclerosis? I thought what a weird and extremely personal and not appropriate question for a construction accounting job and when I met this person who had MS, I was actually excited and relieved to talk about the disease with another person. He replied, “if you are diagnosed with MS, you’re fucked!”. I was shocked and just clammed up not wanting to say anymore. I didn’t know if he was going to spew wrath on me at that moment. Some may think this is funny, but I didn’t. I had been struggling for five years prior to meeting him. It was then I realized there is just absolutely no positivity in this disease with anyone.

Yesterday, my sister asked me if I was depressed? I was taken back by the question. No one has ever asked me this. At this moment my comment to her was no, but the question kept me up all night. I think I fell asleep around 4ish. I thought, over 30 years of living with this disease and becoming wheel chair bound in 2019/2020 losing my ability to walk, went through different jobs some were eh and some were just awful, a violent and hostile uncaring relationship, moving to different states, had a falling out with my sister for a few years, taking care of my mother who was diagnosed with salivary gland cancer, lost a very close friend in 2011 whom I’ve known since 1985, lost two friends to cancer a few years ago, lost friends in general not understanding why, became Deaf from the MS, struggling with a family member that I grew up with and having to let her go because of her crappy-ass attitude, living alone in a wheelchair trying to survive with very little resources, working on repairing my relationship with my sister living in a different state being very cautious (eggshell type) not wanting to start another misunderstanding, dealing with a very abusive and mean person who I thought was a friend but so viscious even my sister was shocked, dealing with health insurance crap, arguing with doctors and neurologists who do not always know what is best for me, dealing with male physical therapists who seem to enjoy inflicting pain on me and making me uncomfortable – recently at the Mayo clinic hospital and a few years ago in Monroe Michigan, reading comments in MS groups I have joined just blows me away, I think this list is sufficient enough for anyone to get the picture. There is more, but it would be a huge book.

Am I depressed? I think I have done pretty damn good for all these years of crap I went through. Yes, I realize everyone has their own story to tell as bluntly told by a former boss “ugh”, but how do I answer this question for myself when the future is not clear. My recent hospital stay was very scary for me. Rode in an ambulance for the first time, rushed into the ER department with over 10 healthcare profssionals hovering over me, very lethargic and weak, clothes removed exposing my naked body “mortified”, trying to understand what is happening, the video relay interpreter (VRI) smiling the whole time while it is total chaos around me, wanted to punch her and throw the machine against the wall! My sister stressed with her new job and me being in the hospital sick, it is just the 2 of us, there is no one else to help out. I am very worried and scared out of my mind. I am home after 11 days in the hospital. Every twitch, pain and bathroom issues has me worried beyond anything I have experienced. I do not want to have any issues that causes my sister more stress and time off work. I pray everyday that I am healing from this, but I am not at peace.

Recovering At Home

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Saturday 08/02/25 is 2 weeks I have been recovering at home. I have never been in the hospital for more than four days. Once in 2007 for an MRSA infection that my PCP inflected on me from an in office procedure, and now in 2025 for 11 days with a UTI and kidney infection that attacked my MS lesions. I have been sleeping a lot since I’ve been home. I am not sure if that is normal, but I think yes since my body has been through the wringer. I am anxious to get back to my everyday routine that I know and have been doing for a long time. Cooking, doing art, one-on-one coaching, and writing my cookbook. I am not taking the cookbook seriously; I am not sure why. Lost interest I feel.

I am getting ready to do an art project for a friend. I made her an accordion junk journal and the journal needs a storage box to put the journal in. Right now, I am planning the colors and pictures to complete it. Maybe by then I will get my motivation back. Thinking a lot about the hospital stay. I have a bad habit of thinking about the “what-ifs”. These thoughts scare me because my sister and I do not have a plan in place if something happens to one of us. I think Karen will be ok, but for me it is a little more complicated. My biggest fear is being dumped in a nursing home for the rest if my life because I have MS and I no longer walk and am wheelchair bound. What will happen to our things, Louie her cat, and other thoughts have come up.

I am starting to have anxiety as I am writing this. I guess I am not ready to figure this out, but I know I need to. I do not have any solutions and I know it is something most people who are in the same predictment as me go through this. Having long term care costs a lot of money too. I am on SSDI so my income is very limited. Another worry is will my body deteriorate over time. What will happen then? I read about other MS’rs and their stories do not help put me at ease.

Still Recovering from Hospital Stay

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Saturday, August 2nd will be 2 weeks after I was discharged from Mayo Clinic hospital; after an 11 day stay. I still sleep a lot and do not have any desire to cook or do art. Not sure if it is because I am trying to get better or my interests just do not make me want to do anything. I try not to talk about the hospital stay much because I do not think people want to hear about it so, I have my blog. It helps me to not think so much.

I am still experiencing discomfort from the Pure Wick (see picture below) the hospital put in me to collect urine. Before doing PT, the physical therapist instructed the nurses to put the pure wick in before the therapy. The wick (blue part showing in the picture) was jammed and bound so tight between the rectum and the spot where the urine comes out and on top of the binding and underwear, they used to keep the wick in place and to get me up from the bed caused such tremendous pain. The physical therapist was an asshole in my opinion instructed the nurses to do this. After 3 unsuccesful attempts to stand up with 2 physical therapists hovering over me and the pain from the pure wick, I was really annoyed and upset. I felt like I could not move from the pain from the Pure Wick and being weak. Then the PT instructed the nurses to move me over to the recliner after the 3 attempts to stand. I was in the recliner position for almost 4 hours with so much discomfort. Finally one of the nurses who was working with me for the 11 days she and another nurse moved me back to the bed after seeing how much pain I was in. Because of the pain from this ordeal, I feel this is what caused me to tell the doctor the next day I want to go home! Period! I am hoping the discomfort I am feeling will subside soon.

I thought to myself these last few days, hospitals and some healthcare professionals can really traumatize a person from their decisions and lack of empathy. I had to follow up with my PCP and endocrinologist as ordered from the hospital. My sister and I just moved so we haven’t found a doctor we like. The two doctors I met this past week and half, their attitude and compassion for a patient lacks big time here. Just not impressed. I need to find someone I can trust. Also, United Healthcare totally sucks in terms of medicine and healthcare coverage; I am changing in October during open enrollment. Doctors I need to work on. I know myself, if I am not comfortable, I will not go to the doctor.

Hospital Stay July 2025

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I was in the hospital for eleven days. Longest I have ever stayed. My last hospital stay was in July 2007 from an MRSA infection caused by my PCP cutting through a lump underneath my arm causing a massive infection. This time was from a serious UTI and kidney infection that attacked my dormant MS lesions causing a flareup. The first few days I was completely out of it, slept so much and was given a lot of antibiotics intravenously. I think towards the weekend I started to feel better. There are some things that are not often discussed among people that have been hospitalized. Bathroom issues, mobility issues, nurses that are not very friendly and sometimes scary looking.

The doctor team at the Mayo clinic was awesome, very thorough with their explanations and tests. The MRI results was good news. No new lesions showing anywhere which is amazing for 33 years of having MS. Asked if I would walk again, the answer was grim. Not likely. Trauma experienced from people where I used to live before moving back home to Michigan (relationship and Deaf community) really wreaked havoc on my body. I am in a wheelchair for life, unless there is some cure to help MS patients. I still have a tiny bit of hope of proving everyone wrong, but after this recent hospital stay, I can see how bad the spine and left side is useless in many ways. Hard truth.

One of the things that was extremely hard on me was the poo and pee cleanup. No one talks about that. It is a hard reality if you are bedridden. Nurses physically clean up all the private areas on your body – rectum and butt where the urine lays while lying in the hospital bed. Hospital beds are designed very poorly. There is no way to go to the bathroom while lying in bed unless sitting on a bed pan which is extremely painful or just go while lying there. It is a humbling experience that you do not understand unless you have gone through it. I appreciate the limited mobility I have now to use the toilet privately at home. Very mortifying and humbling all at once. To this day I don’t know if the nurses were commenting while cleaning me up as I am Deaf. I hope not as I was already extremely uncomfortable.

My hospital stay has me doing some major thinking. Nursing homes and being under someone’s care. I become very emotional about this because my independence is gone in many ways. As I get older what will the mobility be like. The horrors of nursing home care constantly wreak havoc on my peace. Need to start developing plans now as I do not wish to be a burden on my sister.

Research Funding Cut

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Yesterday I received an email from the National Multiple Sclerosis Society indicating funding for research on MS has been suspended by the Republican party.

WARNING LOTS OF ANGER IN THIS POST. IF YOU DO NOT WANT TO KNOW, DO NOT CONTINUE!

Here is a section of the article: “National Multiple Sclerosis Society learned the Multiple Sclerosis Research Program (MSRP) has been unfunded for fiscal year 25. The Society was shared a directive from Congressional Appropriations Committees’ Defense Subcommittee Chairman, Sen. Mitch McConnell and Rep. Ken Calvert, regarding Project Level Adjustments to the Congressionally Directed Medical Research Program (CDMRP) as a result of the Continuing Resolution passed on March 14 by Congress”. The link tom the article: https://www.nationalmssociety.org/news-and-magazine/news/funding-congressional-directed-medical

MS research is a never-ending long process and since my diagnosis from 1991 to now, there still is no cure for or why MS happens. I posted a comment in Facebook last night that started a shit post storm with one person who does not have MS, defending the republican party, and I know for a fact, is a Trump voter and is for him making all these cuts drastically. Let’s call her BIMBO-IGNORANT.   Suppose they cut research funding for a disease called POTS, Postural Orthostatic Tachycardia Syndrome, which her family member has. I bet she would be singing octaves of cuss words about this devasting cut. How is this different from MS? She then goes on and on about how the government works in terms of executive orders and how congress must vote to pass, in other words, droning on and on about Trump and vomiting words dripping in baby diarrhea yellow-green, smelly, disgusting BLAH, BLAH, BLAH’s. She ASSUMED I do not know how the government works.

The article clearly stated the funds have been cut effective March 14, 2025.

What is BIMBO-IGNORANT’S MO- which was proven to me last night “Presumptuous, acting without due respect; arrogant”! I totally disagreed with her due to the fact she knows nothing about MS or me, is a Republican, voted for this imbecile proudly, and embarrassment to the USA, and tried to explain the government policies, which he so blatantly ignores, argues, whines, does what he wants and why would he abide by congress voting? She’s frigging delusional.

Another MS colleague “posted” to me to see the article. And guess what, BIMBO-IGNORANT comments and posts on where to find the article. Mind you this imbecile asshat butts her ignorant two cents into my business and speaks on my behalf. She never gave a shit before on any of my posts, until yesterday. This alone infuriates me. Why? I’m still processing this. And I was honestly annoyed, if you have an incurable disease wouldn’t you want to know everything that is going on about MS, register yourself in groups that are at a national level just to see what’s going on? I was like thinking, seriously you’re asking me. The same person says, I don’t get into politics. Well, I don’t get into politics either, but I found out about the funding cuts in an email yesterday that was sent to me. Why aren’t you getting emails? IMO, stay on top of things related to your disease so you know instead of being ignorant. Well, this is political, it’s funding that was cut for research for a cure. SMH.

This is strike 2 this week for me regarding people and MS. Just waiting for the 3rd strike. If you want to know about the disease and how it has affected my life, ASK ME, DO NOT ASSUME! First, I was told by someone who I thought understood my struggles with MS told me I was assuming that there is nothing to help with the fatigue and now being told by another person who knows NOTHING about MS or me and proceeds to dominate my post on FB about the approved and voted cuts and ASSUMING I do not understand. Her feelings got hurt(ed) boohoo, because I did not agree with her explanations. Why would the President that wreaks HAVOC in the USA in the last 2 months follow the law? A convicted felon and sexual predator that makes up his own law and best of all, stupid people voted for him!

Is It Lying and/or Making Excuses?

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Do we lie or make excuses to ourselves and to others? If we lie, how does this affect our wellbeing? Will it come back to us vigorously by making us sick, struggle to sleep, feel depressed, insecure, the need to appear important and likeable to others, be mean, have a crappy attitude, or gain sympathy. As a wise friend told me once, a liar needs a good memory. The stress of remembering what we lied about, and it can come back and hurt us big time. When we make excuses, we can finagle our way out of a confrontation, not having to tell people or family what is really going on, convince ourselves we will get back to “it” soon, or repeatedly delaying things that really need to be addressed. Another common thing is when lie about your mental health or express how you really feel by denying therapy, and saying this common excuse – why should I pay or throw away money for therapy? But, still struggle with daily life and resting. What we project out from our attitude and behavior glues the actions to people around you, personal and professional. Resting to prepare the mind and body for the next day becomes a constant battle.

I make excuses, but I am not sure if I lie. I often say I am ok when there are days, I know I am not ok. When I make excuses or lie about how I am feeling, my attitude and behavior shows a different projection, it confuses the people I am around. For me, my chronic disease is unpredictable. I have 3 diagnosed autoimmune diseases.  Each day is a new set of emotions, repeated feelings, mobility issues and figuring out how to do things to still maintain my independence. I lie because I don’t want to hear or see anyone’ s suggestions on how to cope or do something because they do not have MS and the other autoimmune diseases. They truly do not understand, I must understand that as well and be patient, more considerate, and I know they are doing their very best. Is this a lie or an excuse?

I am around people more and every day I see things. I am a very observant person more now than ever, I see stuff and am told things that will happen, or the plans are in the works, yet nothing has been done or goals are no closer to completion. So, if I say something, will they have the same attitude and feelings as I do about the MS? Are their feelings and actions valid? My thing is why the denial or delay?

Another thing I think we can all relate to is food, diet, getting healthy, changing our lifestyle in food, losing weight etc. Why the constant starting over? Especially when we know and have seen how much better we feel when we do something healthy and right.  The constant falling off the wagon and making excuses or are we lying about our food issues? These are things I am sure we constantly ask ourselves with no answers. I know I ask myself this all the time. I know and have seen what and how my body functions when things are right. So why excuses or lies?