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I’m Not Crazy!

I had been struggling off and on over about 12 or 13 years with some neurological symptoms that were never severe but they were bad enough to be obvious to me and to those close to me. I went through a period of time where I could NOT correctly dial a push-button phone. I would try and try and would keep hitting the wrong numbers – I just couldn’t coordinate my fingers with what my brain wanted me to do. Either that or my fingers were too fast and my brain couldn’t keep up. In 2004 I lost partial feeling over the entire right side of my body and I had a tingling sensation – it was like my body was cut in half – even half my tongue lost partial sensation. It was a bizarre feeling. I went to see my doctor right away and he sent me in for an MRI. The MRI was inconclusive but they did show a lesion in the pons area of my brain that might explain my symptoms and they told me I could potentially have Multiple Sclerosis and referred me on to a Neurologist. The neurologist I visited could not see anything on the MRI – said my brain was “pristine” and that if there was a lesion, it was so small it was barely visible and couldn’t possibly be causing the partial loss of sensation I was experiencing. He did a full neurological work-up and found me to be functioning normally. He told me he couldn’t think of anything in the brain that could cause half my body to lose partial sensation so I must have some sort of virus that would eventually go away. Well, it DID mostly go away – all except for the tingling in the right side of my neck – that has continued to come and go over the years.

But I dismissed other MS-related symptoms for years because I’d already been through the MS scare and had been told I didn’t have it. I continued to have cognitive decline and was oh so tired. I was yawning so much that my family thought I had some sort of sleep disorder although I have never had trouble sleeping. In 2009 I gave birth to my first child and in 2011 I had my second (and final) baby. I fell when I was pregnant with both kids and the last time I fell, I sustained an injury to my left knee that left me with some residual numbness. So, in late 2013 when I felt some numbness and tingling in my left knee that radiated into my lower leg when walking any distance, I chalked it up to nerve damage from my fall 2 years earlier. I saw a new doctor in December of 2013 – she was to be my new family physician. But when I told her I had a few issues I wanted to discuss at my physical (like the numbness in my leg and difficulty with urination and constipation as well as balance issues and fatigue, etc.) she told me that I’d have to schedule a separate appointment for each issue because they needed to charge a copay for each separate health concern. I decided that no one issue was so bad that I needed to schedule separate visits – especially with 2 young kids and very little childcare support – so I left well enough alone.

However, the tingling and numbness spread up into my thigh and down into my foot and then, in February, it spread to my right foot. No ignoring it anymore. Time to see another doctor. I did an online quiz to determine if I had the symptoms of MS and my answers to the questions indicated a strong probability that I did indeed have MS. This time, I went to see my husband’s physician who is old-school and was willing to see me regarding all my symptoms at one visit. He told me that he didn’t think I had MS but that I had enough concerning symptoms and that I was the right age, right gender and lived in the right region to merit further investigation. So, he sent me in for another MRI. Again, the results were inconclusive so he sent me to a Neurologist. She didn’t think I had enough lesions in my brain for it to be MS and since I used to suffer with migraines, some of the lesions she DID see could indicate damage from past migraines. But she couldn’t explain my symptoms either. She did a very thorough examination – blood work and another series of MRI’s that were MS protocol and high contract and included not only my brain but my spinal column and my lumbar area (checking for disc issues). The results of that series of MRI’s were clear – I had MS. I have lesions in my brain, spinal column and lower thoracic area. She had to admit that she now thought I DID have MS and referred me to a Neurologist who is an MS specialist for a second, confirming opinion. Finally, in April of 2014, I was officially diagnosed with Multiple Sclerosis and I was relieved! Not that anyone WANTS to have MS, but I had really begun to think that I was imagining all of these symptoms. It was causing problems in my marriage because my husband didn’t understand how I could be so tired in the evenings that I would shut down and be unable to communicate effectively. Now we have something to blame and I was finally able to begin treatment to hopefully arrest the disease progression. I’m now on my second DMT.

This has been such a long road to travel and it has caused permanent damage to my relationships because it went undiagnosed for so long. But I am not bitter. One positive that has come from going undiagnosed for so long is that I have 2 beautiful children that I know I would not otherwise have if I’d been diagnosed in 2004. And I would not trade them for anything. I FIND the energy for these awesome kids and I do not intend to lie down and let MS keep me from enjoying every second of their growing up. MS has made it possible for me to be a stay-at-home wife and mother – I can’t hold down a job because of my cognitive issues and fatigue. But so far, with the support of my awesome husband (who does most of the laundry, a lot of the cooking and most of the vacuuming and other work around the house in addition to holding a full time job and maintaining our vehicles and doing all our yard work, etc.), I’m able to be a Mom and help raise my 2 incredible kiddos. My husband and kids are pretty good DMTs!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • PamsaRN
    4 years ago

    WoW! I really understand how horrible the dx is and what a relief it is to know what is going on with your body. I actually fell down a flight of stairs after my 2nd child. I hadn’t really felt like myself since before the birth of my first child. The first dr I went to dxed me with Lupus. I returned after a few weeks of treatment to be told that my Dr was no longer accepting my insurance and had moved to the office across town. This was back in the beginning when Ins companies(HMO’s) had to give you referrals to see specialist.The Dr taking her place was at least 80 yrs old and told me I had postpartum depression. I began to cry and he started rubbing my arm I remember I wanted to sock him because he hadn’t even done a exam and was trying to tell me that my numbness,fatigue,falls,pain,and spasms were all a figment of my imagination.Time passed and my symptoms would come and go but, I always felt drained. Some days worse than others. I had always kept a spotless house, worked and went to nursing school, and enjoyed outings with my family.I graduated from nursing school with the support of a loving husband,a two,and four yr old. I began a career in Cardiac Critical Care.I was born to be a caregiver. I had another “episode” and one of the Drs asked me if I was okay he said “I looked exhausted” I laughed and said great “cause that is how I feel”. He referred me to a Dr who was a personal friend. After mostly normal blood work he dx me with depression and fibromyalgia. He suggested I go to a neurologist. For the most part my symptoms were being treated. Here is the thing that I would say to people who are undiagnosed..don’t hold back from telling the Dr about a new symptom. I had a neurogenic bladder for over a year and never said a word because I was afraid the dr would think I was crazy. In the end my bladder is how my MS was found and dxed. I went to a urologist who did a urodynamic test which I failed miserably.He said only 3 things caused my start/stop bladder 1. did I have diabetes…NO 2.Had I ever had any spinal cord injury such as a car wreck….NO. 3. Had I been tested for MS? hmm well, I had a MRI without contrast that was negative. He looked at me and said “you have MS”. I sputtered “but, my Mri was negative”…he said, I’m putting your neruo on notice. I left his office dazed and my neuro was irritated at me saying” I’m not starting you on MS meds unless I have evidence of 2 attacks”. I left crying. Feeling like the crazy person I was so scared my Dr would think of me. I had a MRI with and without contrast from Brain to Lumbar and a spinal tap. The following week I received a call from neuro, my MRI showed evidence of MS in my lumbar region and the spinal tap was positive for MS. The dr said take a look at the 3 meds for ms and call me back so I can get the process started. I was in shock knowing nothing about MS except I once had a patient that was in a wheelchair receiving IV steroids. So ten yrs after my first flare I was finally dx with MS. The first week I felt such relief to know what was wrong and the next week I cried. My neuro saw me one time after this and then he retired. I was referred to a MS specialist.It was the best thing that could have happened to me in the long yrs of living with a undiagnosed chronic disease.Sorry this was so long keep in mind you ARE NOT CRAZY.

  • joannmaxwell
    4 years ago

    My experience is very similar to yours. And just as frustrating. I was not diagnosed until 2 1/2 years ago at age 60. I have many doctors say there was nothing wrong with me or I was just getting older. It is very frustrating when we can’t rely on doctors to be knowledgeable, caring, and/or committed to finding answers in any way possible.

  • Deborahican
    4 years ago

    I have been diagnosed then undiagnosed for over 8 years now and I am not confused I have all the symptoms of MS and was first diagnosed by an ophthalmologist-neurologist and I trusted his opinion highly but after seeing 2 other neurologists and several MRI’s and a spinal tap they keep say maybe maybe not but I do have 2 rare lung diseases also and most of the meds effect breathing so I get lets just keep watching the symptom’s as they are getting worse without any treatment its so frustrating to me. They say all the lesions on my brain could or could not be MS they just are not sure yet. I have heard there are MS neurologist just not sure where to find on in my area of the southeast. I would just like to know what is going on was so active I am a veteran and was always active lately I have a lot of fatigue and lots of eye problems and trouble walking. I have bruises up my arms from running into walls, door frames, etc. I just feel helpless and not hopeful I will ever get a diagnosis I know in my gut that it is MS like the first Dr. said I have all the symptoms but no one to prove it to me. Does anyone have any suggestions I would very much appreciate it. Thank You in advance.

  • Meets
    4 years ago

    It is very heart warming to read all this…I also have MS and 2 kids and lot of same symptoms …fatigue and loss of cognitive difficulties. I am a stay at home mom and do what I can …but it is my greatest regret not being able to hold a job and be able to do a lot of things like other moms. I am always struggling and it hurts me when I am not able to do what I should be doing ..no strength and all…

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