Rule Out MS

[ironmanswife]

Good Evening,

I'm new here, and currently in the "rule out" stages of an MS diagnosis by my neurologist. I am currently a 25 year old female. My vital signs are all good, except I'm overweight. Other than that, I try to be active when I'm able to. I work FT as a psychiatric social worker and am in the final stages of my master's program.

Here's what happened so far:
- 2010: Abnormal ANA, 1:160 speckled pattern. ANA test was ran because I had an unexplained wrist injury. During treatment, the pain migrated and my wrist became swollen. The urgent care doctor became concerned about rheumatoid arthritis. Further rheumatology labs came back normal.
- Nov 2012: Severe leg pain; difficulty walking. Could not make it from my car to my house. Went to MD the next day, still sore. MD rules out blood clots, runs Vit D levels, which come back low. Started on Vit D3. Beginning of left leg spasms, intermittently, and frequent charlie horses at night.
- May 2013: MD sends me to neurologist for "mental status changes." I was having a lot of crying spells and my husband noted that I would "space out" during these. Neurologist finds hyperreflexia but cannot explain why. B12 levels are run, which come back low. Started on B12 daily. Neurologist does a brain mri w/wo contrast - indication is "rule out MS" but this is not discussed with me. Results come back with a pineal cyst and cerebellar tonsillar ectopia. Neurologist states these are incidental findings, but that he would like a follow-up MRI in one year to make sure the cyst is not growing.
- May 2014: Follow-up MRI shows no changes from previous year. Neurologist clears me. Hooray!
- Fall 2014: Beginning of weird stuff, such as urinary incontinence, and numbness in my legs when on the elliptical. Difficulty with stiffness, especially in the early morning. I started walking down the stairs sideways, holding on the rail with both hands for balance. MD runs ANA again, which comes back normal.
- Nov 2014: Fall down (entire) flight of wooden stairs at my house. MD does X-rays, did not break anything. Having severe leg pain again. MD has a resident with her and both do separate neurological exams. "Well, we know you had some weird neuro stuff before. I found a few other things. You have weakness on your left side. I'm not sure whether this is a result of the fall, or if you had this before and maybe this is what caused the fall." MD decides to send me back to the neurologist for a full near eval. Neurologist orders a full spinal MRI series, w/wo contrast. Come back with some incidental findings (straight neck), but otherwise normal. Still having urinary incontinence, leg pain, spasms in my left leg, frequent charlie horses.
- Mar, 2015: Leg pain so bad I cannot sit through my 4 hour class. Sent to urgent care; given valium PRN and gabapentin. Started PT for leg pain. 4 weeks of PT with no measurable progress. PT stopped. Neuro does a NCS/EMG which comes back normal. I asked Neuro about possibility of MS; dismissed. "Anything could be MS - your toe tingling could be MS!"
- June, 2015: Neuro appt. I took my husband with me, who confirms my symptoms. Leg pain has improved; requested neuro to take me off of valium/gabapentin, which he does. Still soreness, but not the severe pain I was previously having. Urinary incontinence still there, some memory issues, word finding difficulty (ongoing from 2012). Swelling in legs/wrists. Stiffness. Lack of coordination (running into stuff; can no longer use chopsticks like a professional and dropping stuff, difficulty holding pen, forks, etc). Added: Gag reflex is now super sensitive, having difficulty brushing teeth/swallowing liquids. Neuro states, "I think we need to start taking a serious look at possible MS. We had knocked it down a few pegs from the list when your MRIs came back clean, but your symptoms are very consistent with it." Neuro orders another brain MRI and a VEP. Both come back normal.

I'm now waiting for my next appointment in October to discuss with him. Today, I had a weird episode while walking in the sun where I felt completely disoriented. Went home and napped for a few hours, woke up extremely sore and having difficulty doing most things. Husband had to help me cook.

I hate this. Can anyone offer any insight into their early symptoms? Particularly how to get through all of this without having an explanation of what's going on, and therefore difficulty finding appropriate treatment?

Thanks,
Ironmanswife

[NHE]

Welcome to ThisIsMS.

- Nov 2012: Severe leg pain; difficulty walking. Could not make it from my car to my house. Went to MD the next day, still sore. MD rules out blood clots, runs Vit D levels, which come back low. Started on Vit D3. Beginning of left leg spasms, intermittently, and frequent charlie horses at night.

This is a common symptom of low magnesium. Vitamin D is known to exacerbate low magnesium issues causing leg cramps and spasticity. Have you ever had your magnesium levels checked? Are you taking supplemental magnesium? If not, then you may want to try 200-400 mg/day of a chelated form such as magnesium glycinate which is much better absorbed than the more common magnesium oxide form.

By the way, it's common in MS to do an MRI of the cervical spine. Did any of your MRIs include the spine?

Also, how low was your B12? Did they also check your homocysteine, methylmalonic acid and folate levels? How much B12 are you supplementing with? What type of B12 is it, e.g., methylcobalamin or cyanocobalamin? Is the B12 oral or sublingual (under the tongue)?

[ironmanswife]

My magnesium levels were fine and I take magnesium 250mg supplementation daily. I believe it is magnesium oxide.

B12 levels were 511, right on the border of low. Neuro gave me a b12 injection to bring them up immediately then started me on 1000mcg daily. It is oral cyanocobalamin. I believe my folate was run and normal, but not the others. B12 has responded well to supplementation.

I'm having trouble bringing my Vit D levels up, despite supplementation. Neuro raised dose from 2000 IU to 4000 IU daily. First draw in 2012 was 18. Second draw in 2013 was 29. Recently draw was 12. The low end of my hospitals D range is 30. :/

Neuro has MRId everything he could, ha! 3 brain MRIS (with and without contrast each time), lumbar, thoracic, and cervical spine. No lesions. The 3rd brain MRI he did because my symptoms has progressively worsened and he actually wanted to look for lesions. Nope.

Now he's talking about a spinal tap.

[Youarethecure]

Man, this does not sound like fun

Have you been tested for Lyme? Or all the other things that need to be ruled out in order to diagnose MS? NMO? Do you have any family history of autoimmune diseases?

I am so against spinal taps.... but in this case I would personally do it. I am not sure if it would be enough to be diagnosed but it would at least point towards MS (or not). Maybe with all your symptoms plus a positive spinal tap it would be enough to rule in MS? I am not sure of that though.

My advice for you is to do all the things that need to be done if you are diagnosed with something. Diet, exercise, nutrition, and lifestyle modifications will help no matter what is going on. I was diagnosed about 2 years ago at 24 years old. It turned my whole world upside down, but I am a better, stronger person because of all this.

I was fortunate enough to not have to play the "waiting game" and not know what was going on for too long. I had optic neuritis when I was 19 and then when I was 24 I had SO many symptoms and my brain was covered with lesions.

I truly hope the best for you,

Chris

[ironmanswife]

Thank you!

I've been tested for full autoimmune protocol I believe. Lyme, RA, Lupus, etc. I have a family history of Rheumatoid Arthritis in both grandmothers. My cousin (24, male) went through a hospitalization last year in which they found low B12. He ended up with bilateral pulmonary embolisms and nearly dying. He states that his final diagnosis was some sort of cervical lesion/stroke. However, he claims that this is due to drugs. So, my family history is a bit unclear. Though, he did have similar symptoms (leg numbness, difficulty walking, etc), his symptoms could also be explained by blood clots in the legs or something else.

I'm kind of nervous about the spinal tap if he decides to go that route. Neuro states, "Well, we could do a spinal tap but I think it'd be normal." Every other test he has said that on, it has been normal. Although I'm pretty sure he thought he'd find lesions on this last MRI, and he didn't. Neuro states that the NCS/EMG was worse than the spinal tap would be. The medical part of me knows the spinal tap is more risky, and if he wants to do it, I have a second opinion in my back pocket.

Thankfully, because I work in the medical field and for a large hospital, I have excellent insurance. I'm also thankful for this because I understand a lot of medical terminology and my neuro/MD are more willing to have open discussions with me about my tests, procedures, potential diagnoses. My neuro typically sends me my MRI reports as soon as they are available, then we meet and discuss the next steps during my next appt (usually several months later). I don't think he would be comfortable doing that if he didn't know I knew what they mean.

It is not fun. I finally decided to call my doctor today because I tripped infant of a patient's family and ran into my colleague (I had a floppy left ankle. Hooray!). The nurses at my work have officially dubbed me a "fall risk," which is not fun when you're concerned about your physical stuff affecting your ability to do your job. I work in psych, therefore I need to be able to run at all times. I had a stress fracture in my foot where I had to wear a boot a few months back, and they wanted to put me on a 6week medical leave. I had to get a note from my MD saying "She can run in the boot and she is willing to do so if needed."

/sigh.

[lyndacarol]

B12 levels were 511, right on the border of low. Neuro gave me a b12 injection to bring them up immediately then started me on 1000mcg daily. It is oral cyanocobalamin. I believe my folate was run and normal, but not the others. B12 has responded well to supplementation.

I assume the "serum B12" test, which measures total B12 (both the active B12 which can reach the cells and the portion which cannot), was used to establish your B12 level of 511 pg/mL. Since you work in a large hospital, might it be possible for you to have the HoloTc test, which measures the "active" B12? It is possible to have adequate B12 in the blood, but still have B12 deficiency in the cells. By the way, cyanocobalamin (in either injections or oral form) is not readily bioavailable; it must be decyanated before the body can use it.


From page 156 of What's Wrong with My Child? by Sally M. Pacholok, RN, BSN and Jeffrey J. Stuart, D.O.:

Costs (approximate) of commonly used blood tests for B12 deficiency:

Serum B12 [outdated test]… $50
HoloTc [newer, more reliable]… $118
Serum homocysteine… $147
Methylmalonic acid test (serum or urinary form)… $150

Have you had the serum homocysteine test? The methylmalonic acid test?