How Long Have I Had MS?

This is a question I’ve had quite a few times already in the few weeks since I’ve got my diagnosis. It doesn’t upset me at all and is certainly something I’ve asked myself as well. The shortest answer is that we’re not sure. MS is not an infection with an acute onset. It’s a disease with a variety of symptoms and most people have the relapsing/remitting form, meaning it comes and goes. Depending on what your symptoms are and how long they last will determine if you testing is done. Most of my early symptoms felt joint related so I spent a few years chasing rheumatology testing which always came up negative.

I had at least three lesions on my brain. They were in various stages of brightness, meaning some were older than others. If you’ve read my post about my journey to diagnosis, then you know that I did not take the burning sensation in my leg seriously until it spread to my arm. It does not spread for most people. I ended up losing sensation in most of my body and my neurologists have not seen that before. Despite that, the clinical presentation of the disease in my body (lesions and O-bands) is pretty mild.

When I was researching possibilities to explain my symptoms, I often wished someone really recorded their experiences. I can see now that I was having flares but never recognized them as such. I hope relaying this information can help someone who is searching for answers. Please, if you have any of these symptoms, speak to a doctor. It is better to worry for no reason than to ignore something so serious. We caught my MS early because I was so adamant about trying again and again with doctors. As such, I have a good chance of delaying the progress of the disease and enjoying a more “normal” lifestyle.

Before getting this diagnosis, I began to think that I might be bipolar as I noticed my symptoms were very cyclical but I always tested negative on blood work. I know the frustration of believing it’s all in your head and having doctors not believe you. Don’t give up!!

I started having periods of urinary frequency and pain with urination in 2007. Sometimes it looked like we caught an infection early. Sometimes it looked clear. I almost didn’t graduate college because of it. I also had periods of extreme fatigue and nausea. I had what I thought was an infection when I was in China for a study abroad program. However, the lab work didn’t really support how awful I was feeling. Looking back, it was probably the extreme heat we were in as the summers can be very hot there and we spent a lot of time walking and riding in trains and buses of various levels of comfort. I saw a specialist when I got back home. He said that none of my labs looked very conclusive for UTIs and that the white blood cells we had in my clean catches must have just been because I was fat. He did a catheter in the office and my urine looked perfectly clear and yet I was claiming to have symptoms then. I left the office upset but the urinary symptoms went away within weeks.

While I was pregnant with my son in 2010, I had gestational diabetes. At the end of the pregnancy, I also had hypertension and headaches. I spent the last week on modified bedrest. I was negative for pre-eclampsia. I also felt like my legs were walking in different directions and tearing my hip bone apart. We thought it was Symphysis Pubis Dysfunction, where the pelvic bones begin to separate too early instead of just during birth. I had a planned c-section with him and the pain went away.

After my son was born, I recall having a period of vertigo in the Spring of 2011. It happened again in the Spring of 2012. That time, I was in the middle of quitting a high-stress job and felt like I was an utter failure. My doctor thought the dizziness might be from high blood pressure due to the stress of it all but it wasn’t clinically high. It went away shortly after quitting the job.

That fall, I got pregnant with my youngest. I actually found out I was pregnant because I had a UTI a few weeks before. However, the meds were gone and I was still having pain and low fevers. The urinalysis looked clear but the doctor sent it off for a full report. They also did blood work. In the mean-time, I took a pregnancy test because I knew that could elevate temperatures. I have PCOS and needed Clomid to ovulate to conceive my son so it was quite the miracle that I got pregnant without assistance! That evening, the doctor called to tell me that my blood work had high white blood cells so I must have an infection and he was sending in a new antibiotic. Throughout the pregnancy, urinary pain persisted and I changed practices a few times as doctors would not treat my UTIs because they weren’t showing up as high level of infection until I was feeling so sick I couldn’t move. One time, I went to the ER because I thought I was having kidney stones. I had acute stabbing pain in my back. I also had the symptoms of Symphysis Pubis Dysfunction again. On May 25, 2013, about a week from the my due date, I had irregular contractions and a low fever. I called my OB and she told me to come in to Labor and Delivery to be checked out. They had just finished hooking me up to the IV and had left the room when my fever spiked to 103 and the baby’s heart rate started to decrease. I had an emergency c-section and they diagnosed me with a kidney infection. I had more difficulty walking for a few weeks but eventually, the pain went away.

In December of 2013, I had a migraine every day. I had never had them before. I used to get headaches a lot as a teenager but was never sensitive to light. I was also dealing with a 6 month old and a 3 year old, both whom we now know are special needs. I began to research what on earth was going on with my headaches and finally had enough. I went to the doctor toward the end of the month. He said that since it hadn’t lasted longer than a month, he couldn’t do anything. Before January, they went away and I went on with my life.

In November of 2014, the migraines started again and lasted through December. We had just moved and I didn’t have time to get to the doctor. Again, in January they disappeared.

In 2015, the migraines started in October. We had just moved to West Virginia. I was also experiencing high blood pressure due to the pain. I could not get into a primary care doctor until January as a new patient. I saw an urgent care place that said they couldn’t treat the migraines. They gave me water to lower the blood pressure and sent me on my way. They also thought that I might be diabetic. However, checking my blood glucose at the house, everything looked fine. It spikes when I am sick or not feeling well. I started massage therapy as I noticed the migraines were also connected to flares of chronic shoulder and neck pain.

In 2016, I was back in my home town in Virginia. The migraines had started in October again and I went to the doctor, this time coming away with medication. I also started seeing a chiropractor, which helped my chronic pain immensely. By April of 2017, I was off the preventive medicine and rarely needed to use the abortive medicine. However, when I did have a migraine, I needed to use two pills and then it still rarely helped. The only thing that helped was a dark room and not using my eyes. They would last from 1-4 days. I never had any triggers from food. My triggers were only lack of sleep and the shoulder pain. At the time, I wondered why it didn’t line up with anything I had read about migraines. However, I brushed it off. Life was too complicated to care more than that.

In December 2016, I was sick with something just after my kids had strep throat. My tests for strep were negative. I had a fever but my throat didn’t hurt very much. Mostly though, I was just exhausted. I had been running most of my life off 4-6 hours of sleep. I slept for 20 hours the first day. The doctor gave me an antibiotic but after 3 days, I still wasn’t feeling better. I was feeling worse. My muscles and joints felt like they were on fire. I ached everywhere. He did blood work and determined I had an allergic reaction to the medication (which I had taken before) and switched my antibiotic. He also gave me a prednisone shot. Symptoms got better for a few days and then started to flare again. I was given another shot. As a teenager, I had a reaction to prednisone but was assured I shouldn’t have any issue with a shot. Well, I had a reaction to the second shot. I continued to have pain and fatigue for months. I insisted on more testing and they came back negative. I got a second opinion. I pushed for a referral to a rheumatologist.

And then we moved.

Sigh. Literally the story of my life.

We moved to North Carolina. My joint pain improved. I had more good days than bad. Over the summer, I spent a lot of time indoors. I was working on a book. I did feel like I didn’t handle the heat well, but I thought it was just because I was overweight. My husband and I went to Universal Studios in August and my left leg hurt a lot but we had been walking quite a bit and it was hot. The pain went away in a few days with rest.

That fall, I had a period of pain in the back of my left leg. I thought it was sciatica and self-treated at home. Nothing really helped but in time it got better. I also had periods where it felt like my brain was fuzzy.

Just after that, I started having digestive issues. I had bouts of diarrhea and constipation. We moved in December of 2017 and the bouts increased and my doctor referred me to a gastroenterologist. In April of 2018, I had a colonoscopy and endoscopy done. They both came back normal as did all my blood work and other lab tests. The bouts subsided.

At the end of May, I had an episode of unrelenting chest pain. I had often felt tightening in my chest and was told they were anxiety attacks although I never had feelings of anxiety during them. When the pain didn’t cease within a few minutes, as was always the case before, I went to an urgent care clinic. They sent me to the ER. X-rays and EKGs were done and came back clear. They gave me something for the pain and it went away. We moved in early June.

Within weeks of moving, I had a book release. I actually had 2 books release in July of 2018. I can’t say that I want to do that again but I achieved it. I followed up (as advised) with a cardiologist who confirmed my chest x-ray was perfect and my heart in good condition. In August, I went to the Younique Convention in Texas. Texas heat in August. Just before going, I had a bladder infection. I didn’t have a primary care physician set up yet so I used an urgent care facility. During the entire trip, I did not tolerate the heat well. I accidentally left my medicine behind so I had to follow up when I returned. My urine had a lot of glucose in it but looked clear of infection. They suggested I follow up with a primary care as soon as I could–which was a few weeks out. In September, I was diagnosed with Diabetes. My blood work also showed high cholesterol. My blood pressure was high. I also asked for anxiety treatment. I mentioned the intermittent pain and chronic fatigue and was told to not worry about it. I was referred to another cardiologist because I had several episodes of rapid pulse, and for an eye exam.

After starting on Metformin and the other medications, I also started following the Optavia program again. I had lost 10 pounds in August by cutting out fast food. I lost another 20 in September and October. The eye exam came out clear. So did the cardiologist. I was feeling great! We had issues with my kids’ school and that caused me stress and trepidation, but health-wise, I felt better than I had in years.

All that changed on December 17, 2018. You can read about that in my post about my diagnosis. 

So, when did the MS begin? Which of the above symptoms were the first signs of MS? They’re all symptoms of MS. It doesn’t mean I had MS in 2007. Maybe I did. Maybe I didn’t. Maybe my UTIs that don’t test as showing a lot of infection are just pain from the MS. Maybe the fact that they get better after antibiotics (although in the case of my second pregnancy, they did not) is coincidental. Maybe the migraines were Optic Neruitis. Or maybe they really were migraines. It’s impossible to know.

What would have happened if I hadn’t gone to urgent care the day my arm began tingling? What if I waited it out for a few more weeks? It got better. I didn’t even noticed when my right side went numb. I could have missed my chance to get an accurate diagnosis by ignoring the signs of a flare. My flares thus far–whenever they started–have been a nuisance. But they go away and I have previously just charged forward with my life. I learned to live with the pain and the fatigue. However, the unseen damage was being done. Now that I’ve started treatment, I can slow the progress of the disease. I am still exhausted most of the time. I’m still in a flare. My medication doesn’t treat that, but it does protect my nerves and that is SO much more important than immediate relief.