Am I crazy? Is this MS or just...normal aging?

[erinshmerin]

Hi everyone. This is my first post here. I'm reaching out to this community because I'm spiraling a bit. I don't have any perspective on this any more and I'm beginning to think I'm crazy, because I've gone round and round in circles on this in the last few days. I was hoping a few pairs of experienced eyes could have a look over what I'm experiencing and tell me whether or not I need to slow my roll, or whether I should continue on the hunt for something being wrong.

Ok. So. This is going to be long, but I thought I should give you as much detail as possible.

I am a 32 and a half year old woman. I have always been a healthy body weight and since hitting my late 20's, actively work at preserving a healthy lifestyle. I'm 5 foot 4 (and a half!) inches and have varied in weight from 120 to 135 pounds. I exercise moderately to intensely 4-5 x a week (at least until last month; more on that below!). Often that exercise includes running, in the range of 10-12 kilometres a week, though in the past year I have replaced more running with biking to avoid repetitive injuries in the IT band which i just can't seem to shake, no matter how slowly I increase my mileage.

in terms of diet: I eat healthily, and for the past 5 years, very consciously. I am very careful to integrate iron-rich foods into my diet, because doctors have always said my iron is on the low side. Not unusual seeing as I'm a petite white girl. My maternal grandmother had pernicious Anemia, which I know is hereditary, so I have been taking iron supplements daily for years (washed down with vitamin c) and I have had monthly B12 injections for the past 2 years, just to be on the safe side. My diet includes a lot of spinach, kale, pumpkin seeds, quinoa, peppers, berries, almond and cashew butters, chicken and beef. I am a moderate to more-than-moderate drinker of red wine, only.

Health history: As a teen (age 16) I experienced an outbreak of shingles (though a mild-ish case). I DID have chickenpox as an infant--bad ones. Two weeks after the shingles cleared up, I had a viscous case of mono.

More recently: In August 2016, I injured my low back. I am an active person, but the summer Olympics inspired me to try new exercise that I had never done before. I attempted the 10 000 Kettlebell swing challenge, like a dummy. Towards the end of it, I experienced terrible low back pain that no pain killers or opiates could touch. Had a CT scan that November and they found an "small anular bulge" at L5-S1. Lyrica helped a bit, but after trying everything under the sun, as well as 6 months of chiro and physio, I honestly think the thing that eventually made it more bearable was just time spent doing no activity. I abstained from exercise for 9 months and by May of 2017 was relatively pain-free (although that was bad for my mental health).

The other notable health thing that I experienced as an adult was in February of 2017. I am not known to be allergic to anything, though I have had bad reactions the two times i was stung by a wasp. However, in February of 2017, I experienced an acute anaphalactic reaction which included severe urticaria all over my body. I was hospitalized over it, and because the weals/hives just kept coming back no matter how many epipens they gave me, i stayed in hospital for 5 days. (it didn't help that they gave me prednisone in the hospital and I didn't react very well to it, but that is a separate issue).

A month after this occurred, I saw an allergist. He told me that the reaction I had was likely my body's immune system over-reaction to something normal--just like an allergic reaction is. Except, his best guess was that mine was caused by an overreaction to a mild case of the common cold that I had suffered the week prior, rather than my antibodies mistakenly thinking that tomato or peanuts were poison.

About a week after i was released following this episode, on March 7th of 2017, I noticed that a big patch of my outer right thigh was numb. The skin was Just numb. I could actually trace the numb section with a pen; it was a bit smaller than my palm and located on the middle of my outer thigh. It was so eerie, when I shaved my legs I could SEE the shaver going over the skin, and feel it, but then when the razor reached that patch even though I intellectually knew the razor was still there, and could see it touching me, I couldn't feel a thing. Then it would reappear on the other side of the patch. Freaky! I thought maybe it had been caused by the amount of injections I had had in the leg during my hospital stay. Eventually my doc ordered an ultrasound on it, and found nothing unremarkable--no clot or anything.

However, that numb spot stuck around from March of 2017 to somewhere in the summer--late July-ish. And before it went away, I twice experienced another sensation in that area that was so unusual that it shocked me. It felt like a sort of SLAP, like an elastic band had slapped on that spot, or I'd been stung or bitten by some accident. The first time it happened, I was walking to my car from a friend's house and it was so sudden and sharp and burn-y that I reached around and grabbed my leg, fully expecting to find a bug or animal biting me, that's how it felt. I actually went back into my friend's house and asked to use her washroom so i could pull down my jeans and look myself. I did; and everything looked normal. The sensation faded. That happened twice.

In August of 2017 I moved cities in Canada (from a rural area to a larger center). I got myself a new family GP. She wanted blood work and a base physical, just so she could know where I was at. We discussed my Grandma's pernicious anemia, and so she had me tested for B12 and iron; the tests came back normal. She did point out though that I regularly take iron supplements and have been getting B12 shots for years. So, the test (especially for B12) might not be helpful in terms of figuring out my actual B12 ABSORPTION and/or production because I was supplementing it already. She didn't want to take me off the supplements, either iron or B12 (both at the highest doses possible) just to see if it had any effect on me and to be sure, because she didn't want me to suffer the crappiness that would come from that experiment.

Around this time, Late August/early September, of 2017, I started to experience what I can only describe as an ....electric crawling sensation on my right back/shoulder. I've had electrode therapy during physio a few times, when i was a kid and broke my wrist, and this sensation felt something like it. A tingly, current like line being drawn over my right shoulder and back. Sometimes pulsing. I remember sitting at the desk in my new office, full of bright september sunshine, and feeling this inexplicable crawling/currently feeling sort of radiate over my back. And then recede....and then return. And then fade...and then I'd be sitting in the car and I'd feel it under my jacket. Not constant, but intermittent. I remember googling "what does tingly/crawly feeling in shoulder mean"? And my fall into the deep hole of the MS world began.

Since that time, the crawly shoulder feeling has disappeared. However, in December, some of the toes on my right foot started to go intermittently numb. And, I got hit by fatigue in late fall. BIG time. Like can't get out of bed even when the alarm is going and you've already missed a meeting kind of fatigue. I feel like if you told me my job was to sleep, I'd be a champ at it. Could sleep all day. I'm hungry, but have no appetite; wish I didn't have to eat. Just want to sleep. And when I DO sleep, most nights I get night sweats--bad enough that I need to change pj's an lay a towel down over the wet sheet when i get back in.

I thought at first this was just mood related--with winter coming on and the days getting dark, and me starting in a new job and new town etc....but I've taken 50 mg of sertraline every morning for almost 3 years for mood, and it helped the sleeping symptoms of depression almost immediately when I began taking it. Also, things in my life are otherwise GOOD right now--my partner of 10 years were living together again, in a nice place and are more settled than we've ever been, both with good jobs. I had my first nephew.

In fact, things are so good we went on vacation. In late january we had a trip booked to the UK and Scotland. We were due to leave on Monday. Except, thursday I woke up with the worst backpain I'd ever had--worse than when i injured it the first time. It felt like it does when someone is pulling on your shoulder or a finger and you can feel the joint separating. So much pain. I couldn't sleep. No idea what triggered it, as I HADN'T been doing heavy weight bearing exercises this time. I had only done yoga the night before. Anyhow, knowing we had to be on a transatlantic flight in a few days, on the Saturday I went to emergency and begged them to do something. They ended up keeping me over night, giving me an emergency MRI for the lumbar to rule out cauda equina syndrome, and then giving me a cortisone shot to the epidural space which IMMEDIATELY reduced the pain down to about 20 percent (and allowed me to go on my vacation, and get engaged!)

So once I returned from the trip, my first stop was back to my new GP. I told her not only about my back issue--which she already knew about--but about what I've just told you; about the numb patch, the crawling shoulder, the numb toes. She asked me about my vision--yes, it has gone blurry recently. Like I'll take off my glasses and rub but it's still blurry. I've also gotten the "sparkle" effect with the floaters twice. The lymph nodes on my right side around my head are enlarged and tender.

She sent me for more bloodwork. We checked to see if my zinc and magnesium levels were out of whack, and B12 and iron again, and hormones. Everything looked "normal", she said, except I had a positive result for ANA. She also said the indicators of muscle death were high, but not nearly as high as some she has seen.

I do NOT get a copy of test results--that is not something I get in my province. So i have no idea what the levels actually ARE, or what the markers she was referring to were. She said, based on this and what you're telling me, shes suspects I might develop Rheumatoid Arthritis somewhere down the line, due to the Elevated ANA, but that for now she wants to "rule out" MS because of the weird sensory things. As a result she put me on he fast track for an MRI. 4 weeks later (the usual wait is 12) and I am booked for a cranial and cervical MRI this thursday evening.

Family history: mom has hypothyroid (the one where it produces less than it needs). my dad had non-hodgkins lymphoma 11 years ago form which he recovered. My maternal grandmother had pernicious anemia (but still lived to be 99); my maternal uncle has type 1 diabetes, and my maternal great-uncle (my mother's father's brother) had vitiglio. (I mention that and the type 1 diabetes because both are known to be autoimmune disorders to some extent).

It's now March 2018. The back-tingly/crawling is back. The numb toes (just two on my right foot!) come and go. I over-analyse every possible ache and pain and wonder what the hell it is. I'm doing (more) physio for my back and have backed off regular exercise, only doing light biking and eliptical (and am putting on the pounds!). I have seen a pain specialist specifically about my back, and he wants to treat it with more injections in a few months. He put me on lyrica, 75 mg twice a day. I think this new higher dose is making me a bit loopy. The pain specialist is of course less concerned about WHY the pain is generated and if it had any connection to potential neurological problems and is more concerned with just managing the pain that was so severe an acute in January that it drove me to the emergency room.

My new best friend here is a Dr, specializing in autoimmune issues. I told her this weekend what I told my Dr, the information that had caused her to "really want to see my brain" and order the MRI--that I had a numb spot, followed by crawling/tingling, and now numb toes plus fatigue. She wasn't prepared for me to casually announce this. Immediately her face turned red and her eyes welled up. Two or three big tears escaped. She said "I'm sorry, this is so unprofessional, but I am so scared for you. Those sounds like classic MS." Before she got ahold of herself.

This more than anything really got me scared.

And then I come on here, and read that for many of you it takes years and years and years of doctors and appointments to get an MS diagnosis....and all I have are a few tingles and numbness? come ON! Doesn't EVERYONE sometimes experience weird sensations like that? And how on EARTH are they going to prove/disprove that I have this on so little evidence???

This is dominating my mind. I feel really well otherwise; it seems impossible that I might actually have a major degenerative disease. I have no idea if my previous infections or autimmune issues are relevant, or if my low-back disc injury is relevant. The emergency room doctor who looked at that MIR said they thought I had degenerative disc disease, but they didn't say there was a nerve impinged specifically. I have no idea if a back injury could have caused the numb thigh, or the numb toes; maybe I have night sweats from the sertraline, maybe my eyes are blurry because i stare at the computer all day, maybe my ANA test is positive because of that weird anaphylactic reaction last year is lingering, and maybe my shoulder tingles because sometimes shoulders.just.tingle.

Or, maybe it's MS.

Any takes welcome. Thanks for reading, and thanks for being here.

Erin

[Snoopy]

Your Dr. should consider an x-ray which shows if there is a problem with /spine/vertebrae, discs/spacing/bulging/herniated, the MRI does not show this as well as the x-ray. A mechanical back problem can cause neurological symptoms.

I've also gotten the "sparkle" effect with the floaters twice. The lymph nodes on my right side around my head are enlarged and tender. She asked me about my vision--yes, it has gone blurry recently.

If you have not had your vision checked recently you should consider seeing an eye specialist, such as an Ophthalmologist. Blurry vision can be due to different reason, even dry eyes and eye strain. Sparkles and floaters isn't due to MS. MS would not cause lymph nodes to be enlarged and tender. Some people have allergies and allergic reactions, this isn't MS.

Multiple Sclerosis is a disease of the Central Nervous System(CNS) which includes the brain and spinal cord. There is no single test, by it's self, that can give a definitive diagnosis of MS. There is also no symptom(s) that are exclusive to this disease. Many other conditions, some medications, vitamin/mineral deficiencies, and mental health disorders can cause symptoms similar to MS.

Sertraline lists excessive sweating as a side effect.

My new best friend here is a Dr, specializing in autoimmune issues. I told her this weekend what I told my Dr, the information that had caused her to "really want to see my brain" and order the MRI--that I had a numb spot, followed by crawling/tingling, and now numb toes plus fatigue. She wasn't prepared for me to casually announce this. Immediately her face turned red and her eyes welled up. Two or three big tears escaped. She said "I'm sorry, this is so unprofessional, but I am so scared for you. Those sounds like classic MS." Before she got ahold of herself.

Your Dr. IS unprofessional and shouldn't be making a statement of, "Those sound like classic MS." The only Dr. that can determine if you have MS or not is a Neurologist. The Neurologist would need to rule in/out all other possible causes for symptoms as well as testing that would support a diagnosis of MS. A Dr. that wants to "rule out MS" is just making sure there isn't something, like MS, going on.

There is a diagnostic criteria for MS:
https://www.nationalmssociety.org/Sympt ... gnosing-MS

Other conditions that would need to be ruled in/out:
https://www.nationalmssociety.org/Sympt ... o-Rule-Out

There is no blood test that will indicate MS including the ANA. My ANA has always been normal and I have had MS for 34 years.

[NHE]

Hi Erin,

She said, based on this and what you're telling me, shes suspects I might develop Rheumatoid Arthritis somewhere down the line, due to the Elevated ANA, but that for now she wants to "rule out" MS because of the weird sensory things. As a result she put me on he fast track for an MRI. 4 weeks later (the usual wait is 12) and I am booked for a cranial and cervical MRI this thursday evening.

Welcome to ThisIsMS. I hope that your MRI provides useful information for you. When you go in for the scan, be sure to ask for a copy of the radiologist's report and also a copy of the images on disk. This is part of your medical record and hospitals and other facilities only keep them for so long before they're cleared out to make room for new patient's data.

I can't say whether or not if you have MS. Every person's experience is a little different. A diagnosis of MS is a diagnosis of exclusion. Essentially, all other possible causes should be ruled out first since MS can produce such a great variety of symptoms. The Revised McDonald Criteria are a set of guidelines for diagnosing MS. They were recently updated in December 2017. You can review them in the following pdf from the NMSS (see page 4 for a summary of the criteria). https://www.nationalmssociety.org/Natio ... gnosis.pdf

Regarding B12, do you know if other B12 biomarkers were checked? These include tests for such items as red blood cell folate, homocysteine, methylmalonic acid and holotranscobalamin. Your doctor should be able to tell you which tests were done. Serum B12 should be 500-1000 pg/mL especially for a person experiencing neurological symptoms. Note that it's possible to have low to moderate serum B12 and still test in the "normal range" since the low end of the laboratory ranges often go down to about 200 pg/mL. However, only about 20% of circulating B12 is biologically active and available to be used by cells. That's where the test for holotranscobalamin comes into play. It measures the active B12, i.e., B12 bound to the transporter molecule transcobalamin.