undiagnosed.... lumbar puncture or not???

[dpinion]

Hello I am a 39 year old mom of five. I have been healthy and active most of my life. until I got epstein bar about 3 years ago. After recovering from that I never really felt 100% again. I started having symptoms off extreme fatigue about it would come and go sometimes for a week or more then leave for a few weeks

I have pollneuropathy, that's what my nueru say anyway.I have had my b 12 tested and it is in the 480 range but because of the numbness and tingling (hands and feet mainly)although I have had my left and right arm both go numb for brief periods 10 or 20 min. neurologist started me on b12 injections
I have been on then for well over two months along with oral dose I have bladder issues I can't empty my bladder all the way as well and have failed several Neuro exams.

I have upper arm weakness and muscle stiffness in my thighs as well as spasms in a few other muscle a very regular basis. Recently tingling and numbness and pain in my eye double vision I had a dropping eye lid loved that one thank god it was temporary . some slight memory issues .

I dread Dr they all treat me like I am crazy. I look healthy so I must be .I have good days and bad days and I am learning what makes me sick .Heat makes the tingling and numbness worse I live in Florida lol .Stress seems to make me worse as well it will put me in bed for a few days if I am not careful.So rheumatologist acutely told me to go home and get better. He couldn't seem to figure out why I was sick ,really because I don't try to do that every day of my life .I am wondering if anyone else experienced some of this stuff.

I have had 2 Mri that were negative both were 1.5T though which I guess isn't so great the neurologist say I could be just developing MS. So here is the question to get a lumbar puncture or not ? if I do the lumbar puncture it could be negative as well .Neuro said sometime you get symptoms from the MS when your body is first attacking itself before it shows on the mri .I amvjust so tired of being treated like I am crazy.I not sure if I should wait till I have more symptoms or more flair up or have it done now I see so many people with positive mri and negative lumbar puncture. Not sure what to do any advice would be helpful.

[CureOrBust]

It sounded too invasive for no benefits for me personally. I did show up on an MRI however, But if its not conclusive, and will not change your treatment, then for me it required further justification.

[ElliotB]

The procedure can be painful. So it is a difficult one to make. I chose not to do it.

If diagnosed at this time, would you go on one of the MS drugs? If not, I would definitely not do it.

Keep in mind there are many things you can do at this time to help yourself feel better. With or without a diagnosis of MS, I would suggest you follow a MS diet (and loose weight if you are overweight), take appropriate supplements (lots to choose from, get your vitamin levels checked through blood work, important supplements include a quality multi, D3, B-12, Omega3/EFA to start with), exercise daily (that doesn't get you overheated - walking is good if you are able and you can wear a cooling vest outdoors in the Florida heat, swimming, etc.), and remove all stresses from your life.

Hope you are feeling better soon.


"Heat makes the tingling and numbness worse"

By the way, years ago heat was used as a diagnosis tool for MS. An individual was placed in a hot bath and observed for symptoms. While obviously not a perfect way to diagnose, either is an MRI. Plaques come and go and there are a small percentage of individuals with MS that don't have any yet still have MS.

[lyndacarol]

... take appropriate supplements (lots to choose from, get your vitamin levels checked through blood work, important supplements include a quality multi, D3, B-12, Omega3/EFA to start with)

In the case of B12, it is important not to take vitamin B supplements before testing, as doing so will skew test results.

Initial testing for a possible B12 deficiency should include at least:
#1 a serum B12 test (although the newer, more accurate HoloTc test is preferable)
#2 an RBC folate test
#3 a serum homocysteine test
#4 a serum (or urinary – which is cheaper and considered to be more accurate) methylmalonic acid test.

[lyndacarol]

It sounded too invasive for no benefits for me personally. I did show up on an MRI however,

Likewise for me – I felt a lumbar puncture was too invasive and I could see no possible benefit. My first three MRIs over a two-year period were perfectly normal; I was diagnosed with MS based on my symptoms (most important, in my opinion) and neurological lesions on my fourth MRI.

[dpinion]

Thanks all for the reply , as far as the b12 levels neurologist order them and homecystine if I an spelling that correctly was slightly elevated .That is why I start the injections a huge amount what you would give to treat some one with b12 anemia .which is fine because you can't over dose on b12 .My symptoms haven't improved or gone away though. if any thing more frequent and wide spread .I am not over weight and have learned if I stay active walk inside 2 miles a day and get lots of rest I feel better .

I have to say though I was a dental assistant by trade and that is very hard to do when you have numb hands and the standing all day was impossible. I was at my sickest exhaustion wise trying to work full-time and take care of my kids and me . I feel better not working being able to rest and take care of myself, but it puts a huge finicial strain on things .

My Neuro will diagnosis with a positive lumbar puncture with my symptoms. I have started taking a vitamin D supplement because I know that mine runs very low . I guess I may try to chart all my symptoms and see how frequent and how many I have. I have some I didn't mention because a some point it becomes redundant. Maybe I am just over thinking this and should have the procedure . Lol. I just get frustrated Since I am getting mixed messages from my Neurologist it is hard to decide. "it may be to soon but you need to have this lumbar puncture done." Uggh

[ElliotB]

lyndacarol, what is the appropriate time to not take B vitamins before a test?

[lyndacarol]

lyndacarol, what is the appropriate time to not take B vitamins before a test?

As I recall, jimmylegs has suggested a 2-week washout period before any nutrient testing. At least two weeks seems reasonable to me.

[lyndacarol]

Thanks all for the reply , as far as the b12 levels neurologist order them and homecystine if I an spelling that correctly was slightly elevated .That is why I start the injections a huge amount what you would give to treat some one with b12 anemia .which is fine because you can't over dose on b12 .My symptoms haven't improved or gone away though. if any thing more frequent and wide spread .I am not over weight and have learned if I stay active walk inside 2 miles a day and get lots of rest I feel better .

I have to say though I was a dental assistant by trade and that is very hard to do when you have numb hands and the standing all day was impossible. I was at my sickest exhaustion wise trying to work full-time and take care of my kids and me . I feel better not working being able to rest and take care of myself, but it puts a huge finicial strain on things .

My Neuro will diagnosis with a positive lumbar puncture with my symptoms. I have started taking a vitamin D supplement because I know that mine runs very low . I guess I may try to chart all my symptoms and see how frequent and how many I have. I have some I didn't mention because a some point it becomes redundant. Maybe I am just over thinking this and should have the procedure . Lol. I just get frustrated Since I am getting mixed messages from my Neurologist it is hard to decide. "it may be to soon but you need to have this lumbar puncture done." Uggh

I'm glad to hear that your neurologist screened for B12 levels. Elevated levels of homocysteine are a sign/symptom of B12 deficiency; without the actual number and lab's standard range, I am unclear about "slightly elevated" – obviously, it justified B12 injections in your neuro's mind. (You are correct: B12 is not toxic, any amount your body does not need is excreted in urine.)

A methylmalonic acid test could have been helpful. High levels of MMA are another sign B12 deficiency. (Some experts correlate this with neurologic symptoms.)

Please be aware that the B12 injections given in doctors' offices in the US are cyanocobalamin (this form of B12 is cheaper and less easily used in the body because it must be decyanated first). Methylcobalamin is preferred by the body; it is available through a compounding pharmacy.

I am curious… as a dental assistant, were you exposed to nitrous oxide? Nitrous oxide inactivates vitamin B12 in the human body.

I realize that vitamin D is relatively inexpensive, but with your mention of "a huge financial strain on things" I wonder if you live somewhere with a strong source of sunshine, if you could soak up some natural sunlight for about 15 minutes a day. If you do opt for vitamin D supplements, I believe that D3 is the one to buy.

One more thought: if a lumbar puncture will be done, the B12 level in the CSF (cerebrospinal fluid) can be measured, if requested, at the same time that other tests are done.

[dpinion]

I live in south fl I get plenty of sunshine and just started the D3 supplements no sure why I need it since I do live in fl and have been here since I was 2 but apparently my body says I do . I am tan I get out plenty, less now since the heat seems to bother me .I will ask to have them recheck the b12 levels if I go ahead with the procedure .I didn't know it was possible . Thanks for the suggestion . it s a no on the nitrous for me I have been a dental assistant for about 2 years and we didn't use .Hairdresser before that for 15 years. .

[Youarethecure]

I live in south Florida too, the heat down here is insane lol.

I had a clear lumbar puncture when I was 19 years old, but I had optic neuritis and 1 lesion on my brain. It wasn't enough to be diagnosed though. I went 5 years until I had optic neuritis in the other eye plus like 10 other symptoms which led to my diagnosis last year. So essentially, I got the spinal tap for no reason. That makes me annoyed because it was not fun at all haha.

As Elliotb said, there is a lot you can do now that will help you no matter what happens. If the day does eventually come it feels good to know you are setting your self up to fight. Exercise, diet, nutrition, medication (if need be), and lifestyle modifications can help whether a person is sick or not. I always try and be proactive with doing everything possible.

Best wishes,

Chris