Undiagnosed.... Single mom freaking out

[jimmylegs]

can't hurt to conduct a wide macro and micro nutrient assessment. insufficiency or imbalance can affect ability to fight infection, increase ms risk, and many other things, for example:

How is maternal nutrition related to preterm birth?
http://www.ncbi.nlm.nih.gov/pubmed/21548777
"Further research is needed to identify the best nutrition for women who may become pregnant, but in the meantime there is enough evidence to suggest that targeting dietary advice that is available at women before they become pregnant may be a better approach than waiting until pregnant women book for care, which is usually toward the end of the first trimester. Data from experimental studies into mechanisms by which maternal nutrition may affect fetal development and pregnancy outcome suggest that this is too late."

[KnJsmommy]

*UPDATE*
I am still fighting w/ my insurance about necessity of MRIs. Apparently for this type of test to be covered by them, there has to be recent head trauma, or a solid Neurological diagnosis.... SMH! My GP already stated that he suspects MS, but won't give me a diagnosis until he's looked at my brain & spine. He also had me visit an eye specialist due to my optical symptoms. This doctor gave me a diagnosis of Retrobulbar Optic Neuritis, explaining that that is a common presenting symptom of MS patients. He has referred me to a neurologist (as did my GP), but my insurance is being anal about this!! Anyone have an idea how to proceed?

[NHE]

*UPDATE*
I am still fighting w/ my insurance about necessity of MRIs. Apparently for this type of test to be covered by them, there has to be recent head trauma, or a solid Neurological diagnosis.... SMH! My GP already stated that he suspects MS, but won't give me a diagnosis until he's looked at my brain & spine. He also had me visit an eye specialist due to my optical symptoms. This doctor gave me a diagnosis of Retrobulbar Optic Neuritis, explaining that that is a common presenting symptom of MS patients. He has referred me to a neurologist (as did my GP), but my insurance is being anal about this!! Anyone have an idea how to proceed?

Your insurance company may have an appeal process. Have you asked your neurologist to write them a letter?

[KnJsmommy]

Unfortunately I haven't been seen by the neuro yet... The soonest available appt for new patients was Apr 7, so I do have to wait yet again. Meanwhile my eye issue is getting more frequent, which worries me. From what I've read, it could lead to complete loss of vision, which honestly scares the crap out of me. I'm a single mom & not in a position to become blind. How would I be able to care for my very young kids?!

[KnJsmommy]

*UPDATE*
NCV done 2wks ago showed no peripheral nerve problems in my legs, but did show I may have Carpal Tunnel in my arm. The lumbar X-Ray was perfect. I know xrays don't detect MS, but what about NCV? Is that used to rule it out? The vertigo & ringing has gotten worse, my retrobulbar optic neuritis (was just in left eye) is starting to affect my right eye as well, and for the last 2 days the skin on my back & ribs has become very tender to touch (almost feels like sunburn w/ no redness or heat), that I can hardly wear a shirt at all!! My balance is no better, and my lower legs still feel like pins & needles, especially when I stand up or lay down. My Neuro still can't get me in any sooner than the 1st week of April, which is frustrating. My GP has suggested a service dog for counter balancing, and assisting me when I fall. He has also completely ruled out fibro, lupus, b12 def, diabetic neuropathy, ALS & Guillian-Barre, among other stuff. I really wish my GP would provide answers I can understand, but if anything he's leaving me more confused about all of it! I really hope the Neuro can shed some light in April... But right now that seems an eternity away!

[lyndacarol]

*UPDATE*
NCV done 2wks ago showed no peripheral nerve problems in my legs, but did show I may have Carpal Tunnel in my arm. The lumbar X-Ray was perfect. I know xrays don't detect MS, but what about NCV? Is that used to rule it out? The vertigo & ringing has gotten worse, my retrobulbar optic neuritis (was just in left eye) is starting to affect my right eye as well, and for the last 2 days the skin on my back & ribs has become very tender to touch (almost feels like sunburn w/ no redness or heat), that I can hardly wear a shirt at all!! My balance is no better, and my lower legs still feel like pins & needles, especially when I stand up or lay down. My Neuro still can't get me in any sooner than the 1st week of April, which is frustrating. My GP has suggested a service dog for counter balancing, and assisting me when I fall. He has also completely ruled out fibro, lupus, b12 def, diabetic neuropathy, ALS & Guillian-Barre, among other stuff. I really wish my GP would provide answers I can understand, but if anything he's leaving me more confused about all of it! I really hope the Neuro can shed some light in April... But right now that seems an eternity away!

It is good that your GP has ruled out some of the likely causes for your symptoms. Will you share your B12 test results with us? Most US labs have their reference range for vitamin B12 set too low. In Japan, results below 500 pg/mL are considered deficient; in the US the typical cutoff for deficiency is 200.

Another possible (and VERY common) cause for neurological symptoms is a deficiency in vitamin D. Over 1/2 of the world's population is deficient in vitamin D. Ask your GP to order the 25-hydroxy D blood test. It is relatively inexpensive (usually about $50-$70). Or, in April, ask your neuro to order it.

[KnJsmommy]

lyndacarol... He did not give me specific B12 levels but did say that it was more than double what would be considered a deficiency level. I did ask him twice about this, but he keeps insisting I keep my appt w/ Neuro in April (no prob!). On the plus side, my shirt isn't hurting me like it was the last 2 days

[lyndacarol]

lyndacarol... He did not give me specific B12 levels but did say that it was more than double what would be considered a deficiency level. I did ask him twice about this, but he keeps insisting I keep my appt w/ Neuro in April (no prob!). On the plus side, my shirt isn't hurting me like it was the last 2 days

Your B12 level may be just fine, but it would be useful to know the actual test result numbers.

I see nothing wrong with keeping the appointment with the neuro in April (neurological symptoms CAN stem from a neurological condition, BUT neurological symptoms can result from problems in other specialists' areas, too). There is no specific test to rule out MS; MS is a diagnosis of exclusion, made after other more likely causes have been excluded. In other words, when tests have ruled out the other possible causes for your symptoms, MS is the "last man standing."

Any doctor can order any test – ask the neuro for a vitamin D test. Ask the neuro for a physical (paper) copy of your B12 tests (which I expect are in your file… probably available to him digitally, online). I am glad to hear you have some improvement on the skin-shirt-sunburn sensation. Symptoms are not easy to deal with – I get a "sunburn" feeling in my legs.

[KnJsmommy]

lyndacarol... He did not give me specific B12 levels but did say that it was more than double what would be considered a deficiency level. I did ask him twice about this, but he keeps insisting I keep my appt w/ Neuro in April (no prob!). On the plus side, my shirt isn't hurting me like it was the last 2 days

Your B12 level may be just fine, but it would be useful to know the actual test result numbers.

I see nothing wrong with keeping the appointment with the neuro in April (neurological symptoms CAN stem from a neurological condition, BUT neurological symptoms can result from problems in other specialists' areas, too). There is no specific test to rule out MS; MS is a diagnosis of exclusion, made after other more likely causes have been excluded. In other words, when tests have ruled out the other possible causes for your symptoms, MS is the "last man standing."

Any doctor can order any test – ask the neuro for a vitamin D test. Ask the neuro for a physical (paper) copy of your B12 tests (which I expect are in your file… probably available to him digitally, online). I am glad to hear you have some improvement on the skin-shirt-sunburn sensation. Symptoms are not easy to deal with – I get a "sunburn" feeling in my legs.

Thank you... This journey certainly hasn't been fun. I will ask the neuro for actual copies of my tests, when I see him, and also ask him to do a vitamin D test.
I was discussing things with my mother about when I was a kid, and how some of the problems from my youth (bladder mainly, and my vision) have progressed. She did mention that I was on amitrtiptyline and something else, but she couldn't remember what for. I do have ADHD, and got that dx at the age of 8, but was on adderall for it... the amitrtiptyline was for something else entirely. As an adult, the fatigue has overcome the ADHD, but also the mental fogginess has gotten frustrating. I literally forget what I just spoke to someone about just a few minutes prior. I hate not being able to remember recent stuff, and find myself second-guessing everything I do. I even ask myself mid sentence if I just said what I'm saying, if that makes sense. I'm really getting to the point where i feel like telling my GP that I don't care what diagnosis I get (I know that sounds awful), just get it over with and try to fix it!!

[lyndacarol]

This journey certainly hasn't been fun. I will ask the neuro for actual copies of my tests, when I see him, and also ask him to do a vitamin D test.
I was discussing things with my mother about when I was a kid, and how some of the problems from my youth (bladder mainly, and my vision) have progressed. She did mention that I was on amitrtiptyline and something else, but she couldn't remember what for. I do have ADHD, and got that dx at the age of 8, but was on adderall for it... the amitrtiptyline was for something else entirely. As an adult, the fatigue has overcome the ADHD, but also the mental fogginess has gotten frustrating. I literally forget what I just spoke to someone about just a few minutes prior. I hate not being able to remember recent stuff, and find myself second-guessing everything I do. I even ask myself mid sentence if I just said what I'm saying, if that makes sense. I'm really getting to the point where i feel like telling my GP that I don't care what diagnosis I get (I know that sounds awful), just get it over with and try to fix it!!

I do not know if you are taking any vitamins at this time; but, if so, discontinue any vitamin D supplement at least two weeks before a D test will be done (you don't want to skew the results).

In reviewing this thread, I am reminded of your mention of "hydronephrosis" in your first post. Proper functioning liver and kidneys are necessary for vitamin D to be converted into the form used by the body. I do not know if swelling of your kidney interferes with this vitamin D pathway, but it certainly seems possible to me. (By the way, I wonder if your hydronephrosis is a chronic, long-term issue. This should be mentioned to your neuro at the April 7 appointment.)

Since vitamin D deficiency is among the possible causes for all your symptoms, since it is not an expensive test (NOTHING like the cost of neurological tests!), and since many doctors are adding it to routine testing like blood pressure, glucose, and cholesterol, I expect your neuro will not hesitate to order the vitamin D test for you. (Cognitive problems, such as "brain fog" and forgetfulness, are common in vitamin D deficiency.)

Take a list of your medications to your appointment – many medications interfere with nutrient absorption (it is possible that amitriptyline and Adderall can interfere).

I realize that you are frustrated with the speed of the journey to your diagnosis… But you need the correct diagnosis in order to get the correct treatment. I am confident that you will get there.

[lyndacarol]

My son was delivered prematurely because I was already ultra-high risk & had developed pre-eclampsia. Not only that, he was failing to thrive thx to an incompetent placenta. He was jaundiced & developed asthma, and was having trouble gaining weight for several weeks. I know that you're not a dr, but could this have been caused by a possible B12 deficiency?

This might indicate a connection to low vitamin D as well – if the neuro doesn't ask about pregnancy issues, I think you should bring it up:

Maternal vitamin D status and the risk of mild and severe preeclampsia (March 2014)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4053531/

"Conclusions

Maternal vitamin D deficiency may be a risk factor for severe preeclampsia…"


And then there is this article:

Vitamin D status in early pregnancy and risk of preeclampsia. (April 2015)
http://www.ncbi.nlm.nih.gov/pubmed/25446694

[KnJsmommy]

*** UPDATE ***

I finally had my neurology appointment today. After a lengthy discussion, he watched me walk, and I only had to take 3 steps before I started dragging & nearly tripped over my foot, at which point he had me come back to the exam room. He then did some neurological exam, using a vibrating buzzer thing, checked reflexes, and re-confirmed optic neuritis with a thorough eye exam. Based on his clinical observations, he strongly suspects that I have MS, and has ordered 2 MRIs (brain & C spine) both w/ & w/o contrast. I thought I'd be freaked out with a dx of MS pending MRI confirmation, but if anything, I am strangely relieved!