Share your experience with progressive MS. Get the conversation started.
Share your experience with progressive MS. Get the conversation started.
Hi…when I first diagnosed with MS in ’87 it was the relapsing/remitting form but after I had a major attack in ’94 it is now secondary progressive…by major I mean it hit my brainstem and left a “black hole”. I started taking Betaseron in ’94 but because it messed with my white cell count I switched to Avonex but now I’m on tysabri.
Dave, thanks for sharing your experience. I often wonder if I have moved onto SPMS as well….
Hi all! Thought I’d briefly share my MS story: Dx’d 1985, age 25. NOTHING I could do about it back then, so I promptly put those 2 words “multiple sclerosis” completely out of my vocabulary and mind, aka DENIAL. Never went back to the neuro. Meanwhile, I was able to raise 3 wonderful sons & somehow kept my sweet husband!
Fast fwd to 2010. Years and years of symptoms finally culminated and there was NO MORE DENYING THAT SOMETHING WAS VERY WRONG!
Decided to grow up, got into the MS clinic at UTSouthwestern Dallas, dx’d with SPMS immediately. MRI’s showed major active disease, a sizable black hole & innumerable lesions. Started Gilenya 11/2010 – & successive MRI’s since then show no active dz or dz progression! Thank God, literally.
Now I am just dealing with the symptoms that I call collateral damage: fatigue, inability to stand or walk very far – noodle legs/drunk walking- are the result; muscle loss due to inactivity, blurred vision at times & maybe hearing loss? Biggest complaint are my COGNITIVE PROBLEMS! I go on “overload” easily, too much sound, too much light, too many decisions, etc… Even my once creative self finds it nearly impossible to start a project! If this is as bad as my SPMS gets – compared to what SO MANY others are dealing with – this is NOTHING.
MY ADVICE: Be as proactive with your health as you possibly can!
Your collateral damage symptoms are exactly the same as mine. I am most concerned about my Cognitive decline and my memory is almost nonexistant!! Bladder troubles and balance issues along with that “drunk walk” you mentioned are no picnic either! Vision and hearing troubles have cropped up now too. I’ve been diagnosed since 1996. Have been on Betaseron since then. As my symptoms have worsened over the past couple of years I’m ready to try something new. I’m beginning to start at the UT Southwestern MS Clinic in Dallas as well. My first appt. is with Dr. Hart on Oct. 28th
We are so sorry to hear about your MS journey. You may want to check out Jackie’s blog on tips and apps that can help with memory loss: https://multiplesclerosis.net/living-with-ms/forgot-memory-loss-ms/
Keep us posted,
Hello all, my first post. My name is Kathy. My question is, could it be possible to not be able to make heads or tales out of your MS? I feel great, I do not have the fatigue that comes with MS in most and no pain. But, what I do have is the slight drop foot and the balance issues. Not all the time, I have speech problems, swallowing issues and the feeling of being nervous when bad weather is coming. I went from RRMS and all I asked was, if I’m on my shots how can my walking get worse? Well I was told I am now PPMS and there is nothing for you. Go home and take care of yourself. I went to a new doctor and he says I am now SPMS. Don’t no what to think. I’m just going with the flow and love to try something new but he says it wouldn’t work for me. Confused in New Jersey, Kathy
Hi, Kathy. I’m glad you decided to post your question/frustration with this change of thinking. It’s very possible to have one type of MS and the doctor call it something different. My MS symptoms began with leg numbness, foot drop and balance problems. Like you I am fortunate and don’t have pain with my MS. I was diagnosed RRMS but often wonder if I have moved on to SPMS. Luckily my doctor believes that everyone should be on a drug no matter what type of MS we have. His thinking is they just haven’t studied these in SPMS and PPMS, and the drugs may very well help to slow the MS.
Although I am on a drug for my MS (Tysabri) I continue to decline like you. But I have also had a relapse or two! The drugs don’t stop MS unfortunately -they just slow it down and if we are lucky that can be slowed to a crawl. it is not at all unusual to continue to notice more problems.
As for the doctor who listened to your one question and changed your MS type to PPMS, I am going to guess this was a general neurologist and not one who specializes in MS. This would be pretty casual to change MS types without further testing.
Ask this new doctor to consider putting you on one of the RRMS drugs anyway – several are in trials for SPMS and being on one now pretty much is not going to be harmful to you. If I were in this spot I don’t think I would just go home and wait until more happens to my physical condition. I hope you can talk this over with your neurologist and he sees the wisdom in treating you with something. Laura, moderator
And here I go and I thank you in advance for your patience and taking the time to read this…I was diagnosed back on October 1, 2012 immediately with very aggressive Multiple Sclerosis within a week after what I can only call my worrisome symptoms. I hooked up with a MS Specialist immediately since I thought a “specialist” for MS would be my best option to help me win this battle I was getting geared up for. He suggested Tysabri for me and I got on board. I was then diagnosed with RRMS about 4 months after my initial diagnosis when I experienced a 2 week remission from the worst symptom ever for me which was “brain fog”. The term “brain fog” to me is putting it very nicely because I feel as though I am literally going crazy some days with it. I stayed with the Tysabri for 22 months and then BAM I tested positive for the JC Virus. After letting my “specialist” go for reasons I can go into at another time, I hooked up with another neurologist and he seems to be well-versed in the MS arena. He re-did my bloodwork to find out what my levels of the virus were so I could “plan” my next steps for treatment. I decided, after a 2 month break from the Tysabri and no other treatment in the interim, to go back on the Tysabri with heavy monitoring of my levels for the virus. Right now I feel like something is better than nothing BUT my confusion is with where I am at with this damn disease. I have no “new” lesion activity (thank God) with the exception of a few “black holes” that showed up on my most current MRI BUT the damage that has occurred symptom-wise for me really never remitted with the exception of the brief 2 weeks from the “brain thing”. My new doc still has me slated as very very aggressive RRMS BUT I am still so confused as to what that exactly means. I apologize for the length of this, I am just at a loss for what the heck to do so I can at least feel I am doing the very best possible for me and this damn disease. Thank you and feedback, suggestions, and responses will be welcomed. ~Cathy
THE CAUSE OF MY PPMS DETERMINED!
Written in 2015:
First know that I always considered myself healthy, active, and vibrant; until I wasn’t.
In the early years of the 1990s, my early 30s. I began to create and sense health problems, but was ignorant to the causes. Medical Doctors offered no explanations or help.
I can now say fairly assuredly that my eating habits, which, at the time, I thought were fairly good, set off a cascade of reactions that eventually began to create serious health issues: Large lunches loaded with carbohydrates were consumed Monday through Friday – some days more, some days less – followed by very limited physical activity. I was mostly a desk jockey and only walked significant distances from time to time. Those days when high carbohydrate lunches, such as pizza or pasta, were consumed, an afternoon headache followed, so I began consuming OTC analgesics to fight the headaches.
After I started at a new Management job in 1994, large, carb loaded lunches were consumed daily in the company cafeteria. Afternoon headaches became a daily occurrence. I tried fighting the headaches with coffee or chocolate, or both. Now I know that these only worsened the situation by adding sugar and carbs*1. OTC analgesics were not effective, so I started alternating formulas. I used Ibuprofen, acetaminophen, and aspirin. Headaches continued. Analgesic consumption continued. Profuse sweating from my head was a terrible side effect that I had no idea I was causing by consuming so many toxic chemicals. Blood appeared in my stool from time to time. I now know that was a result of the damage the analgesic chemicals were inflicting on my gut and should have raised a big red flag. At the time, I was following the instructions on the bottles, so I didn’t feel the analgesics were responsible. Still, being suspicious, I did cut back on the use of those that sometimes created belly pains. Instead I ingested other analgesics that were not much better *6. To make matters worse, my new Management position came with a ton of new responsibilities and stress.
Also in 1994, I started going to the gym every morning before work. This practice led me to believe I was taking care of my body. Eggs and bacon for breakfast at the company cafeteria felt good after a work-out. Typically, during mornings at the office, I felt great. Unfortunately, early rising for the gym left me with an average of 6 hours sleep each night, not giving my body a chance to rest and rebuild daily. I found it challenging to pay attention or even stay awake at afternoon meetings.
This continued through the remainder of the 1990s. I consulted with several Doctors about the afternoon headaches, but no solutions were offered. Friends and family said stress was to blame for my daily headaches. I knew it was not stress because I loved my job, loved the people I worked with, and enjoyed every minute of the day – despite the headaches.
Until one day in 2003, after telling me about the link between my large lunches and the lack of post-lunch physical activity, my GP suggested I cut back on lunches and switch to salads *1. By this time I was working for IBM in NYC. I started to have a 16 ounce Slim Fast shake at room temperature and a small bag of pretzels for lunch every day. The shake gave me vitamins and minerals with very few carbs, as well as some of the liquid my body desperately needed. The pretzels helped fill me up.
It worked. I was able to seriously cut back on the use of OTC analgesics. The headaches subsided and I lost a little weight. Some days, inexplicably, I still got headaches. I now believe it was due to dehydration. I was not drinking enough. I even took pride in my ability to take analgesic pills without water.
Around the same time, a blood test with my GP revealed that my blood triglycerides were very high (400), but no prescription or diet adjustment followed, when simple, daily fish oil pills could have helped tremendously.
I’m pretty certain that, by 2003, I had Leaky Gut Syndrome for a few years already *3. The damage was done. I was not supplementing and was not on any type of diet, so I was relying on the resiliency of my body operating on limited sleep and limited nutrition. I was still consuming dairy without concern because the media told me it was good for me. I now have proven through an elimination/reintroduction process that casein and whey proteins from dairy were slipping through my leaky gut into my blood where these proteins were activating my immune system to attack. I later learned through research that my immune system remembers these proteins so it can easily identify them as an enemy upon future encounters. Unfortunately, I have read that dairy proteins appear similar to myelin, and when the immune system is activated by dairy proteins, it also attacks the myelin sheath protecting my central nervous system.*5
This went on for several years between the mid-1990s and mid-2000s, but my body was able to compensate by using alternate nerve pathways. However, by the summer of 2006, in the heat of central Florida, those alternate pathways became hard to find and symptoms of MS started to appear in my gate. I incorrectly assumed the gate problems were related to my now healed shattered patella, acquired in a car accident in 2001. My gate slowly got worse over several months. Sometime in the early part of the decade my sister was diagnosed with MS. I hadn’t heard about the sibling link, so it never occurred to me that I might also have MS. Her MS also began to show symptoms after a car accident and back surgery, but did not affect her gate.
To compound my already compromised body, in 2000 I started a very stressful job that I did not enjoy. It had me flying all over the country every week to work in mostly hostile environments.
I was diagnosed with PPMS on February 1, 2008.
Since then, I have discussed my causal theory with my sister. She also confessed to overusing analgesics. However she also attributes stress in the office as well as a car accident where she experienced a significant back injury. Combine the OTC analgesic abuse, the office stress, and the physical trauma of the car accident to place the body at a serious disadvantage to maintain good health.
As for myself; the overuse of analgesics, the daily over-consumption of carbohydrates, lack of sleep, the constant dehydration, and the trauma of the car accident where I shattered my patella, compounded by the stress of my new job, all created an environment where my body found it extremely difficult to maintain good health. An autoimmune disease such as MS was inevitable. Given that my sister acquired MS after similar experiences, this may indicate that we are genetically predisposed to autoimmune disease. Our younger brother does not abuse analgesics, eats an organic, paleo diet, and practices resistance training at home. Since our sister’s diagnosis and my diagnosis in 2008, he has been careful and fearful of an autoimmune disorder.
I count myself blessed that I was able to function normally until MS symptoms began to appear at age 45. That gave me 45 years of wonderful, healthful living. I am grateful I was able to marry the most beautiful, loving, compassionate girl that ever lived – and she stays with me and supports me to this day. I developed great success in my career; I got to travel to South America and Asia on company business; I went to Yankee Stadium for three World Series games; I got to build my dream house and drive the cars I wanted all my life. I am grateful I was able to bank over $0.5M while I was working so I continued to support my family after becoming disabled and losing my income. We brought four beautiful children into the world and I got to take them on wonderful vacations and attend all their big events and accomplishments. My parents are a big part of my life. My entire family has been supportive. I am also very grateful that my MS lesions are in my spinal cord, and I have experienced no brain fog or other mental issues.
So if I could send a message to myself back in 1990, I would strongly recommend I eat lighter, healthier lunches, and consume water all day. For those days that I still felt a headache coming on, I would go up and down the stairs at the office a couple times until I felt better – to burn off excess carbs. I would avoid analgesics, and take better care of my gut. I would make sure I allowed myself 7-8 hours of sleep every night.
I would have then avoided the headaches, the over-consumption of analgesics, being 20 lbs over weight, the Leaky Gut Syndrome, all the profuse, embarrassing sweating, the eczema, and the constant exhaustion and sleepiness.
These days (2015) I am very careful about what I eat. I no longer think the Slim Fast shakes are healthy, so I do not drink them anymore. I won’t eat pretzels anymore either. I blend vegetables and fruit into a tasty drink every morning. I strive for 8 hours sleep each night. I exercise every day and include stretching, cardio, and resistance training. I take supplements – vitamins, minerals, and herbs. I never take analgesics. My MS appears to be in remission, but I have not yet recovered the abilities that MS took from me. Some days I see small indicators that complete recovery is not far off (e.g.; a symptom disappears or an ability returns so I can complete a physical task that I previously could not). The overwhelming MS fatigue that brought on afternoon naps not long ago has completely lifted. I believe the light fatigue I sometimes feel these days is just part of recovery.
I WILL NEVER GIVE UP and I WILL INSPIRE OTHERS TO NEVER GIVE UP!
5 rules I wish I had followed more closely in my 20s and 30s
1. Eat natural foods with high health values, low sugar and low carbohydrates. Focus on plants, fish and lean meats – organic whenever possible.
2. Exercise daily. Include cardio-vascular and resistance training. Once the exercise habit is developed, it feels more natural. You will actually crave your daily exercise for the good feelings it brings you throughout the day.
3. Limit usage of drugs and avoid toxic chemicals. Carefully limit alcohol, tobacco, gluten, OTC or prescription drugs, internal or topical, especially anti-biotic. Use prescription drugs only when your doctor tells you they are absolutely necessary. Toxins are found where you may not expect them (e.g.; bread, pasta, soda, fruit drinks, sun block, soap, antiperspirant, and more) so be cautious.
4. Practice your faith daily. Include prayer and/or meditation as part of your daily routine. Your mind requires stability and contentment so seek it every day.
5. Sleep seven to nine hours of natural, non-drug induced sleep per night. High stress jobs (mental or physical) require rest for rebuilding your body.
Disclaimer: I am not a Doctor, nor have I received any medical training. My knowledge and insight on this subject was gained via a long road filled with extensive research in books, Internet blogs, self-analysis, Health Care Providers, the experiences of other MS patients, and repeated trial and effort.
*1. Why Do I Get a Headache After Eating Carbs? http://www.livestrong.com/article/519581-why-do-i-get-a-headache-after-eating-carbs/
*2. Multiple Sclerosis Gut Check https://multiplesclerosis.net/news/multiple-sclerosis-gut-check/?utm_source=weekly&utm_medium=email&utm_campaign=140618&uuid=eabb1569d7021019cd1a825c4831f6dc
*3. Leaky Gut Syndrome: A Modern Epidemic with an Ancient Solution? http://www.townsendletter.com/June2014/leaky0614_2.html
*4. ‘Leaky Gut Syndrome’ Implicated in Multiple Sclerosis http://www.healthline.com/health-news/leaky-gut-implicated-in-multiple-sclerosis-092514#3
*5. Cow’s Milk MS Connection http://www.overcomingmultiplesclerosis.org/About-MS/Causes-of-MS/Cows-Milk-Connection/
*6. 9 Signs You Have A Leaky Gut http://WWW.MINDBODYGREEN.COM/0-10908/9-SIGNS-YOU-HAVE-A-LEAKY-GUT.HTML
*7. Bovine Colostrum & Autoimmune Diseases http://www.icnr.org/articles/autoimmune.html
Inflammation is a hallmark of autoimmune diseases such as MS, Lou Gehrig’s disease, Crohn’s, and inflammatory bowel disease, just to name a few. As explained by Dr. Perlmutter, many of the factors that affect permeability of the blood-brain barrier are similar to those that affect the gut, which is why leaky gut can lead to neurological diseases as easily as it can manifest as some other form of autoimmune disorder.
I transitioned from RRMS to SPMS 3 yrs ago. It was slowly taking away the use of my legs and my left arm and hand but they were still able to function and I was able to walk with the aid of a cane. I also had a serious case of COPD and an enlarged prostate which caused frequent urination.
3 weeks ago, I started to feel flu like symptoms which progressed to the point that I sought medical care. I was diagnosed with a strain of the flu not covered by this yrs flu shot and, because of the totality of my conditions, I was hospitalized. It was then discovered that I had a secondary infection causing pneumonia. It took two courses of Tamiflu and antibiotics before I could be discharged. I was hospitalized for a total of eleven days.
The flu caused an exacerbation of all my other conditions to the point that due to the SPMS, I am now in a wheelchair, have virtually no use of my left arm and hand (I am, or was, left handed), and pronounced loss of use of my right. I also have to have several breathing treatments daily for my COPD which has now been evaluated as “end stage” and I have to have an in-dwelling catheter because of the enlarged prostate.
Then the kicker…………..I was put on Hospice care in my home.
The moral of my story?…….GET A FLU SHOT, but realize that it might not be enough and you just might need to avoid as many situation as possible where you may be exposed to sick people and if you do get it, seek medical attention immediately because, as it has done in my case, it can be life threatening.
Oh well,at least I probably won’t have to worry about Christmas shopping this year.