This Is MS Multiple Sclerosis Knowledge & Support Community

I believe I have MS but do not yet have a diagnosis. I dont know where to go from here or if I'm just playing a waiting game for a diagnosis. Here's a rundown of my experience. Maybe someone can sympathize with my frustrations of seeking a diagnosis or has insight as to what to do next.
Summer of 2014
I began experiencing sharp pain in my left leg and hip. I didn't think it was anything but a deficiency in iron.
Thanksgiving 2015
a black spot appeared in my left eye. It continued to grow to cover ya a third of my vision and the doctors said it was possible optic neuritis although the ms was taken too long after initial n to be sure. At this time I began to have daily headaches. The headaches soon became nauseating migraines and I noticed a numbness in my left arm.
Christmas 2015
I had a total of 5 Mris, a lp and 20 blood tests. All of which were normal. During this time the numbness spread to my right arm, then my left leg, then my right leg and spasms and muscle pain evolved to be a part of my daily life. I noticed difficulty in formulating thoughts, forgetfulness, reduced bladder control and occasional breathing difficulties. At the end of the day is when all these symptoms would be worse and I was overcome with daily fatigue. In this time I saw two neurologists and my gp. I was prescribed migraine medication but it didn't help anything. After about 4 months of being basically bedridden due to pain, my doctor prescribed to me a concoction of supplements including magnesium, butterbur and riboflavin. I also take b12. I cannot go a day without taking these or my symptoms become dramatically worse but even on these, there are still days of muscle pain, spasms and finding it difficult to complete normal tasks like writing or speaking proficiently. I also notice that eating sugar exacerbates them dramatically and eating plant based eases symptoms. Heat exacerbates symptoms as well. In the summer it is often worse or even just going in the hottub can cause pain or spasms. I was supposed to go back a few months ago(at the one year mark) and redo imaging but I am not keen to hear that it is all in my head again and that I am fine when j know that I am not. Something is wrong. I know it can take years for diagnosis so I have begun living as if I already have ms and take care of myself accordingly.

Ps I also have celiac and I've heard that if you have one autoimmune disease the chances of having another are greatly increased.

Welcome to ThisIsMS. You mentioned that you're taking B12, but were you ever tested for a vitamin B12 deficiency? How much B12 are you taking and of what form, e.g., cyanocobalamin or methylcobalamin? Are you taking methylfolate?

A complete test for B12 deficiency includes serum B12, homocysteine, methylmalonic acid (MMA) and red blood cell (RBC) folate.

Your breathing difficulties could potentially be related to high levels of homocysteine which is a cardio toxic amino acid that is elevated in both B12 and folate deficiency.

Hi,

You have something but I think you need more tests. It may not be MS.

Who are you relying on for your diagnosis and care?

Regards,

rainadarling wrote:I believe I have MS but do not yet have a diagnosis. I dont know where to go from here or if I'm just playing a waiting game for a diagnosis. Here's a rundown of my experience. Maybe someone can sympathize with my frustrations of seeking a diagnosis or has insight as to what to do next.
Summer of 2014
I began experiencing sharp pain in my left leg and hip. I didn't think it was anything but a deficiency in iron.
Thanksgiving 2015
a black spot appeared in my left eye. It continued to grow to cover ya a third of my vision and the doctors said it was possible optic neuritis although the ms was taken too long after initial n to be sure. At this time I began to have daily headaches. The headaches soon became nauseating migraines and I noticed a numbness in my left arm.
Christmas 2015
I had a total of 5 Mris, a lp and 20 blood tests. All of which were normal. During this time the numbness spread to my right arm, then my left leg, then my right leg and spasms and muscle pain evolved to be a part of my daily life. I noticed difficulty in formulating thoughts, forgetfulness, reduced bladder control and occasional breathing difficulties. At the end of the day is when all these symptoms would be worse and I was overcome with daily fatigue. In this time I saw two neurologists and my gp. I was prescribed migraine medication but it didn't help anything. After about 4 months of being basically bedridden due to pain, my doctor prescribed to me a concoction of supplements including magnesium, butterbur and riboflavin. I also take b12. I cannot go a day without taking these or my symptoms become dramatically worse but even on these, there are still days of muscle pain, spasms and finding it difficult to complete normal tasks like writing or speaking proficiently. I also notice that eating sugar exacerbates them dramatically and eating plant based eases symptoms. Heat exacerbates symptoms as well. In the summer it is often worse or even just going in the hottub can cause pain or spasms. I was supposed to go back a few months ago(at the one year mark) and redo imaging but I am not keen to hear that it is all in my head again and that I am fine when j know that I am not. Something is wrong. I know it can take years for diagnosis so I have begun living as if I already have ms and take care of myself accordingly.

Ps I also have celiac and I've heard that if you have one autoimmune disease the chances of having another are greatly increased.

Welcome to ThisIsMS, rainadarling.

" What to do next"… Here's my suggestion.

Your symptoms are consistent with many conditions. MS can only be considered after the other more likely conditions have been ruled out.

As a first step, call your GP's office and request a vitamin D blood test. The particular test you want is the "25-hydroxy D blood test." (Request your own copy of any test results – it is important to have the actual test result numbers. "Normal" is not adequate.) Over 1/2 of the world's population is deficient in vitamin D. (I have read that up to 70-80% of Americans are deficient.)

Next, request the 4 tests to rule out a possible vitamin B12 deficiency: #1 a serum B12 test, #2 RBC folate test, #3 a serum homocysteine test, and #4 methylmalonic acid test (As NHE has already listed). What were your numbers on these tests?

Either a vitamin D deficiency OR a vitamin B12 deficiency can produce neurological symptoms. Has your GP ruled out these possibilities in the 20 blood tests that have been done? Has your GP tested your thyroid hormones? Liver and kidney functions? By the way, gluten sensitivity (celiac disease) can also cause neurological symptoms.

You know your body best; your symptoms are NOT "all in your head!"