I'm a nurse practitioner, and I think I have MS

[Mokin]

I am writing this because I know how it feels to be on the outside of a diagnosis. First and foremost, I'd like to mention that I've worked in healthcare for 8 years. I started out as an RN and I am now a nurse practitioner. I will be the first to apologize for anyone in the healthcare community who has ever dismissed your symptoms, because I am right there with you. I have always considered myself a practical person and when I treat my patients, I like to treat them as if they are my own family. When I treat other primary care conditions, patients are so used to an uncaring or very sterile attitude that is synonymous with some healthcare providers. That being said, I will start with my story. About 10 years ago, during my first marriage, my husband at the time shoved me into a solid oak bed and the whole thing split down the middle. I was a nursing student at the time and I remember thinking that my thoughts were unclear. I specifically remember thinking the next day (during a nursing exam) that I could not remember anything. I knew I had a concussion. I didn't go to the ER because I knew exactly how to treat it. Looking back, I should've at least had a scan to see what part of my brain it affected. At this point, I had one child. Moving forward and a divorce later, I have remarried to a wonderful man and we have children together making that a total of 4. That's enough to make anyone tired; however, I feel there's fatigue related to the day to day flow of things, and then there's fatigue that transitions into something else entirely. Back last Summer (June 2016), I was finishing up master's degree. I was working full time and going to school full time while trying to raise my small family. 3 years prior, I was diagnosed with ADHD and put on stimulants (Vyvanse). In the beginning, it worked like a charm but now it's not working at all. I have switched doses, I have changed drugs and none of that has helped. The foggy brain and slowed response is still there. I do feel like I daydream a lot. I digress. Back last Summer, I was pulling my daughter's cheerleading bag out of the garage and it caught a shovel up against a while in just a way that it made it fall and it struck my head in almost the same spot. We were going to a birthday party before my daughter's game and I remember crying and rubbing my head. When it hit, I saw stars and for the next several days I had some issues with cognitive function. After that, I noticed my stimulants were not working and that's when my PCP changed up the dose, the drug and timing of the drug. None of those worked. Looking back during my schooling, there are other things that make me wonder if I have MS. As a provider, I should know to just get it checked out but there is a vulnerability that comes with trying to diagnose MS, because on the healthcare provider side I know that providers are quick to write it off or to completely misdiagnose what is going on - mostly due to gross ignorance about the condition itself. Hence why I'm here. I feel like I need a helping hand from people who have been there - not as a healthcare provider but as one human being to another. I will stop blabbering now and try to put my symptoms into some sort of chronological order

2008 - waking up feeling unrested, feeling like my whole body was made of lead. I had a lot of fatigue. I did have a baby this year but the symptoms started popping up before her conception.
Those symptoms got worse after the incident with the bed. I had an MRI about a year later of just my head and it did not show anything.

Fast forward to 2014 - the symptoms are still present (and another 3 children later), I am diagnosed with ADHD. I was placed on stimulant therapy and it worked great until June 2016. They ruled other autoimmune issues like hypothyroidism.

In between 2014 and 2016, I was in graduate school. I started noticing that my right eye was constantly twitching, which now I know is called a blepharospasm. I really thought nothing of this since I was tired a lot and chalked it off as being really stressed out.

June 2016 - the shovel hit me in the head. Not long afterward, my stimulants stopped working like they used to and no changes that were made fixed this.

Around September of last year, I noticed my feet going numb and my fingers feeling numb. Diabetes was ruled out and I moved on and just thought maybe I was imagining it.

Around October of last year, I started having shooting pains in my face on one side. I thought I might have a cavity. My dentist did not see anything and thought it might be due to my bruxism. A few weeks after seeing him, the pain caught me again, this time it was enough to bring a grown man to his knees. It shot up the side of face towards my ear and temple. Sometimes I would have a dull ache like the beginnings of an abscessed tooth but this was also ruled out. Sometimes it will change sides. It's never been on both sides at the same time. Meanwhile, my fingers and toes still feel numb from time to time. There is no pattern to it.

In November, I noticed I was having trouble articulating words, almost like I had cotton in my mouth. I knew what I was trying to say but I just couldn't get it out. At one point, I was talking to a patient. After she finished, I sat looking at her for a good 30 seconds and then finally answered her and my response was very slow and I was putting emphasis on words that shouldn't have emphasis. I thought that it might be because I was stressed out about my new role as an NP but I'm not sure if that's the case at all.

In December, I started noticing this sensation running down my back left scapula, almost like someone dumped a pitcher of cold water on me. For about two years before this, I had this sensation that I couldn't take a good deep breath, almost like someone had their arms around me or my lungs were already filled up too much. I thought it might be anxiety at the time. It would come and go. When the cold water sensation came, the deep breathing issue came back.

And that reminds me, In January of 2016, I started noticing my ability to swallow was impaired. Not so much that I couldn't get the food down, but it was almost like I had to really concentrate on swallowing. I thought I had forgotten how to swallow.

Fast forward to today, my mental fog is still around, the shooting pain (what I'm thinking is Trigeminal Neuralgia) comes and goes, my enunciation of words is still impaired, and I feel VERY slowed down. I am still on stimulants and they work from time to time but not like they used to. The numbness comes and goes. As of last week, I had numbness on the right side of my face close to my ear, circled around to my cheek, and back around to the lower part of my ear (close to my earlobe). It was almost like getting Novocain when you're getting a dental procedure. I slapped my face, dug my nail into it and compared it to the other side and it was definitely different. When I got home, my husband asked why my face looked like it did and I told him it was because my face went numb and I was trying to see if it was "just in my head". That numbness lasted one day. I started doing some assessments on myself. One of the assessment techniques I did is called a Hoffmans sign. It's when you flick the middle finger while you isolate the IP joint (the most distal joint in your finger). I flicked it and my trigger finger and thumb adducted towards each other which is a positive finding. I also have exaggerated reflexes in my bilateral lower extremities. My reflexes in my upper extremities are not equal on both sides. I know I should just bite the bullet and get this checked out but I don't know if I am in denial or if I'm just afraid how a colleague would react. I know it's silly but I just want to be sure before I even consider getting checked. Again, I'm sorry if any healthcare provider has ever written you off because these symptoms are scary.

If you're still with me, thank you. I have always had constipation, When I was about 16, I noticed unequal pupil sizes. This went away. I'm still having trouble finding words. I don't have what I'd consider to be an MS gait but I am VERY clumsy and assessing you're own walking pattern is difficult. When you think about it, you start to walk differently. I have bruises all over from my clumsiness. I do have a slight tremor. I'm dropping pens more and more and now I'm afraid my personality is changing some. I've had an astigmatism in my right eye which causes me to have some visual problems that get better and worse. So I don't know if this is optic neuritis or truly just an astigmatism. I have no motivation. Thinking about doing things overwhelms me, which in my career path, is not good at all. I've always been highly motivated. I just need some advice from you all. I'm sorry if this description is all over the place. I appreciate all of your comments and guidance related to my issues. God bless.

[NHE]

Have you had any blood tests? Vitamin B12 deficiency masquerades as many neurological diseases including MS. Please see the book "Could It Be B12? An epidemic of misdiagnoses" by Sally Pacholok as reference. I suggest you get tested for B12 deficiency, i.e., RBC folate, B12, MMA and homocysteine. As a person experiencing neurological disorders, you'll want B12 at least 600 pg/mL. Ignore any laboratory ranges for B12 that scale from 200 pg/mL. That's much too low. If B12 tests OK, around 600-1000 pg/mL, then consider other possibilities. By the way, what type of diet do you follow? Certain diets, e.g., vegetarian or vegan, can lead to B12 deficiency as B12 is only found in animal products.

[jimmylegs]

hi mokin, welcome to the forum. very very sorry to hear about what you've been going through.
re symptoms, my focus is not in the mainstream conventional ms direction, the docs take care of that for me the emphasis is first and foremost on making sure nutrient levels are where they should be, make sure nothing is a symptom of a deficit occurring inside the normal range, and when that's all certain, let the docs worry about anything leftover.
i imagine you know about nurses being at higher risk of ms. when i hear about multiple children, which is certainly lovely, i do however start to wonder how many years apart, how much time has been allowed in between to replenish tissue stores of nutrients that go into building little ones, and whether status quo diet has been sufficient to rebuild stores since final pregnancy and so on. related (not at all perfectly, but i'm procrastinating just by being on here right now!): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4927329/
questions:
have you considered asking for a referral to a dietitian, to see if there might be adjustments which could be made, which could in turn help your symptoms? i expect you already know that there are a constellation of nutrients issues which contribute to issues experienced in ms and other chronic conditions.
do you have a sense of the nutritional implications, if any, of the drugs you've been prescribed?
i personally can relate to and have described my own personal nutritional solutions to many of your symptoms, such as cognitive issues, anxiety, dysphagia and so on, so if you're interested in reading about any of it let me know and i can point you to related past posts. i hope you are interested because i really believe there are extremely likely to be some very easy nutritional solutions to some of the specific issues you have described.
i had better sign off now, others will certainly chime in. it's a good community of support, whichever route(s) forward you choose

[lyndacarol]

If you have not had the vitamin D blood test called "25-hydroxy D", please consider requesting it and let us know the actual number result.

Please read the information at http://www.grassrootshealth.net and the following sub-forum here at ThisIsMS:

Coimbra High-Dose Vitamin D Protocol
http://www.thisisms.com/forum/coimbra-h ... tocol-f57/

[Snoopy]

Fatigue is so common and has so many different causes. Life in general can be so very exhausting and overwhelming. ADD medications/stimulants can quit working, they can cause fatigue and brain fog. The longer you use a stimulant when you have those side effects the worse your fatigue, brain fog, word search will get. You would need to stop using stimulants for awhile to see how those symptoms are off of them. Eye twitching is very common in the general population. It can be caused by fatigue, eye strain, stress/anxiety. Eye twitching can also be caused by stimulants.

There is no symptom unique or exclusive to MS as there are many other conditions, mental health problems, vitamin/mineral deficiencies and some medications that can cause similar symptoms as those seen in MS. There is a diagnostic criteria for MS, The Revised McDonald Criteria. The criteria relies heavily on MRI evidence. Part of the criteria requires all other possible causes for a person's symptoms be ruled out. The only way to know if a person has MS is by seeing a Neurologist and undergoing testing.

[jimmylegs]

a couple of older but potentially relevant papers
http://annals.org/aim/article/692224/dy ... deficiency
http://jamanetwork.com/journals/jamaneu ... cle/580158