MS or Tumor?

[mamarama]

Hello everyone,

Thank you in advance for your time. I'm 31/F with 3 kids (4,2, 9 months). I'm having some strange symptoms that began right after my last baby was born. These symptoms were up until 1 month ago were called "anxiety" by a neurologist who I recently stopped seeing. One month ago, I got a second opinion by a neurosurgeon who found a small right-sided skull-based tumor on my MRI in my paracavernous sinus. This was on a high-resolution MRI from April, while the low-resolution MRI in early Dec was completely clean. My current neurologist/neurosurgeon do not think that the tumor's location explains everything, especially since my symptoms are bilateral. Although my MRI is clean (FLAIR showed no white-matter lesions, and only abnormality was the mass), they are still keeping MS on the table.
My symptoms:
Vision problems: first was 4 days after delivery, when I headed back to hospital because my vision was "zig-zagged". Clean CT scan in ER. For months after I had "optical migraines" and face pain. 3 months post-partum I had stabbing pain in both eyes, problem with peripheral vision in both eyes, and my earaches started. My peripheral vision has recovered in my left eye, with my right eye still showing some deficits. In general, my right eye just seems darker. I still have pains in my eyes daily- 75% right side. When the pain hits, my eyes get blurry.
Earache since November (75% right). The earache is probably the most consistent and painful feature of this all.
Clean MRI in December (low-resolution.) They did the orbitals and saw no optic neuritis.
I've also had pain in my neck, arms, hands and feet.
Additionally, I've had trouble swallowing- mostly liquids- which I sometimes "breathe" in. I've had a few times when liquids went up my nose while swallowing.
My gag reflex has gone away and my "open mouth and say ah" reflex is bad- really not much moves when I do it.
I also have trouble tasting spicy food- I put some wasabi on my tongue and NOTHING happened.
Minor balance issues- I nearly fell when doing the "walk the line" drunk test at neurologist's office.

I have a spinal tap coming up in a few weeks, as well as additional MRIs of the head and spine. I'm also getting referred to another neurosurgeon who is a specialist in skull-based tumors, for a biopsy. This is all alarming to me because I've always been extremely healthy. I am on the thin side, don't smoke/drink, take a multi-vitamin, etc...
Thoughts? Do these symptoms, which seem too general for the tumor, fit into an MS presentation?

Thank you.

[lyndacarol]

Hello everyone,

Thank you in advance for your time. I'm 31/F with 3 kids (4,2, 9 months). I'm having some strange symptoms that began right after my last baby was born. These symptoms were up until 1 month ago were called "anxiety" by a neurologist who I recently stopped seeing. One month ago, I got a second opinion by a neurosurgeon who found a small right-sided skull-based tumor on my MRI in my paracavernous sinus. This was on a high-resolution MRI from April, while the low-resolution MRI in early Dec was completely clean. My current neurologist/neurosurgeon do not think that the tumor's location explains everything, especially since my symptoms are bilateral. Although my MRI is clean (FLAIR showed no white-matter lesions, and only abnormality was the mass), they are still keeping MS on the table.
My symptoms:
Vision problems: first was 4 days after delivery, when I headed back to hospital because my vision was "zig-zagged". Clean CT scan in ER. For months after I had "optical migraines" and face pain. 3 months post-partum I had stabbing pain in both eyes, problem with peripheral vision in both eyes, and my earaches started. My peripheral vision has recovered in my left eye, with my right eye still showing some deficits. In general, my right eye just seems darker. I still have pains in my eyes daily- 75% right side. When the pain hits, my eyes get blurry.
Earache since November (75% right). The earache is probably the most consistent and painful feature of this all.
Clean MRI in December (low-resolution.) They did the orbitals and saw no optic neuritis.
I've also had pain in my neck, arms, hands and feet.
Additionally, I've had trouble swallowing- mostly liquids- which I sometimes "breathe" in. I've had a few times when liquids went up my nose while swallowing.
My gag reflex has gone away and my "open mouth and say ah" reflex is bad- really not much moves when I do it.
I also have trouble tasting spicy food- I put some wasabi on my tongue and NOTHING happened.
Minor balance issues- I nearly fell when doing the "walk the line" drunk test at neurologist's office.

I have a spinal tap coming up in a few weeks, as well as additional MRIs of the head and spine. I'm also getting referred to another neurosurgeon who is a specialist in skull-based tumors, for a biopsy. This is all alarming to me because I've always been extremely healthy. I am on the thin side, don't smoke/drink, take a multi-vitamin, etc...
Thoughts? Do these symptoms, which seem too general for the tumor, fit into an MS presentation?

Thank you.

Welcome to ThisIsMS, mamarama.

To answer your last question, I think your symptoms could fit into an MS diagnosis BUT your symptoms could fit into many other conditions. You were wise to stop seeing neurologist #1 (I am quite sure your problem is not due to anxiety!). The discovery of a small tumor by neurosurgeon #2 may be incidental and totally unrelated to any your symptoms.

The pain you described in your arms, hands, and feet may also be called peripheral neuropathy. Compare your doctors' investigations to the following suggestions from the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Testing for a B12 deficiency is a good place to start since that condition shares many of your symptoms:
"Everything You Want Your Doctor to Know about Vitamin B12"



I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

As you will discover, each of us here at TIMS has his/her own unique ideas about MS. Mine revolve around insulin, as well as B12. (As I share my ideas, remember that I have no medical background.) The following sentence, however, is scientific fact: Pregnancy is one of two times in life (Puberty is the other time.) when a woman is in an insulin resistant state (her body is producing increased insulin in order to gain weight and put weight on the fetus). I suspect that the mother's body often does not revert to normal secretion immediately after delivery of the baby. Perhaps that was your case. Your pancreas may continue to produce excess insulin today. If you request your GP to order a "fasting blood insulin test" (which is NOT the same as a glucose/blood sugar test), this problem can be ruled out if your insulin level is in the optimal 3 UU/ML or lower range.

We wish you all the best.

[mcames12]

Unfortunately, since I'm undiagnosed, I'm afraid I can't offer much insight. I'm like you, in that my symptoms started shortly after my baby was born and now feel like they're worsening, in spite of clean MRI's last year. It's very frustrating not to have answers. I've learned to keep pushing -- I'm not onto my third neurologist because I felt the other two were lazy (they thought I had anxiety, too). It's sounds like you're going through another round of testing soon -- let us know how you get on. Our symptoms are very similar -- I've had swallowing issues and eye pain, as well as the sensory stuff. Best of luck to you!

Michele

[jimmylegs]

hi and welcome

having kids puts a pretty big strain on mums' nutrient resources. ms patients have an array of nutrient issues with the best and longest known being vit b12. much more recently vit d3 has made an appearance. outside the mainstream, the klenner protocol for ms, which is about 40 years old, places a heavy emphasis on b vitamins and vit E, and includes two other critical essential nutrients for ms: zinc and magnesium.

childbearing is particularly rough on maternal zinc status. loss of taste sense is a classic zinc deficiency symptom. zinc deficiency occurs within commonly used 'normal' ranges. serum levels need to be in the neighbourhood of 18 umol/L to match healthy controls.

the swallowing issue you describe (dysphagia) and the anxiety are two symptoms i used to have to deal with, both of which resolved after identifying and correcting an insufficiency of magnesium. my levels were low normal so wouldn't flag any issue with the lab or the doc, but they were still low compared with healthy controls in research. serum levels should be upwards of 0.95 mmol/L.

the upper limit for long term daily zinc intake is 40mg. recommendations for ms patients are on the order of 25-50mg per day. as a short term measure, you can do up to 100mg per day (in divided doses to prevent nausea) for one month, to address deficiency.
getting zinc from food is safer in the long term than using supplements (which must be balanced with copper to prevent copper depletion).
pretty much the best source of dietary zinc is oysters. other healthy sources, with mgs per serving:
http://www.whfoods.com/genpage.php?tnam ... #foodchart

with magnesium, for maintenance you want about 400mg per day. to build up poor stores, go for more like 600mg per day. most people don't get anywhere near enough daily magnesium, and ms patients are even worse off.
healthy dietary mag sources including mgs per serving are listed here:
http://www.whfoods.com/genpage.php?tnam ... #foodchart

tracking your current intake against those daily targets should give you a pretty good idea of whether you could expect to be deficient or not. other factors besides pure intake that might interfere with status are high consumption of things like wheat gluten, phytates, caffeine, sugar, alcohol, as well as high levels of physical activity and sweating.

re being previously healthy, this related discussion may be of interest:
http://www.thisisms.com/forum/general-d ... ml#p221256

detailed info on ms nutrition:
http://www.thisisms.com/forum/regimens- ... c2489.html

hope that helps!

[lyndacarol]

Dysphasia (difficulty swallowing) is also a symptom of a B12 deficiency.

[jimmylegs]

personally, i was b12 deficient for years, level undetectable (by the assay used) when i did a proper washout, and never had trouble swallowing. with magnesium it was a whole different story. when i was still in really bad shape but had learned about magnesium and started taking it, i could literally feel it kick in in my throat. that effect lasted for ages until i finally got my levels up enough that i no longer specifically felt the magnesium arriving at my throat.

here's me trying to figure it out in march 2007: http://www.thisisms.com/forum/general-d ... tml#p24873
apr 2007, still a moron: http://www.thisisms.com/forum/post25696 ... oat#p25696
sep 2007, the pharmacist tipped me off to what i had been doing wrong: http://www.thisisms.com/forum/post30912 ... oat#p30912
oct 2007 throat progress!: http://www.thisisms.com/forum/post31450 ... oat#p31450
dec 2007 the magnesium 'knock': http://www.thisisms.com/forum/regimens- ... tml#p33482
2009 re shortness of breath and reoccurence of the 'knock' after accidental d3 overdose: http://www.thisisms.com/forum/general-d ... tml#p64120
2010 re magnesium, muscle pain and dysphagia: http://www.thisisms.com/forum/post10666 ... ck#p106663
2013 recap and recommendations: http://www.thisisms.com/forum/natural-a ... ml#p216789

this was quite a fun little exercise. i had forgotten that i had tried mag specifically on my throat *before* talking to the smart pharmacist. also, i hadn't realized what a generally stupid and slow learner i was in 2007. pretty funny.

[mcames12]

This is so helpful -- thank you!