This Is MS Multiple Sclerosis Knowledge & Support Community

I am a 56 yr old registered nurse. About 3-4 weeks ago, I began to develop some odd sensations on the skin of my arms and legs. At times it felt like my skin was cold, at other times, almost like sunburn. Next came numbness and tingling of both my feet and hands. When it was at its worst, my legs felt a little weak---and wobbly. These symptoms seem to be worst at night and while the severity waxes and wanes, it has been constant since it started. I have also experienced some cramping of my feet and once in my lower arm---almost like a charley horse. I visited my MD who did a lot of blood work and my ANA came back quite high. This is not new---though the level has gone up quite a bit----(I have had alopecia universalis since age 50) Lucky me!
My MD is sending me to a rheumatologist tomorrow but I have researched the symptoms of all the usual culprits, from Lupus to scleroderma, and none of them seem to match. What does seem to match is a MS diagnosis. That said, I know there are a lot of mimicries but for now it appears Lyme is less of a concern as both my ELISA and Western Blot were negative.
I am going to strongly request a referral to a neurologist. Has anyone else here experienced this progression of symptoms? In your opinion should I have a spinal tap and/or MRI done to R/O Ms or is it too early at this point for those tests?
Thanks to anyone with the time to respond!

cinsan58 wrote:I am a 56 yr old registered nurse. About 3-4 weeks ago, I began to develop some odd sensations on the skin of my arms and legs. At times it felt like my skin was cold, at other times, almost like sunburn. Next came numbness and tingling of both my feet and hands. When it was at its worst, my legs felt a little weak---and wobbly. These symptoms seem to be worst at night and while the severity waxes and wanes, it has been constant since it started. I have also experienced some cramping of my feet and once in my lower arm---almost like a charley horse. I visited my MD who did a lot of blood work and my ANA came back quite high. This is not new---though the level has gone up quite a bit----(I have had alopecia universalis since age 50) Lucky me!
My MD is sending me to a rheumatologist tomorrow but I have researched the symptoms of all the usual culprits, from Lupus to scleroderma, and none of them seem to match. What does seem to match is a MS diagnosis. That said, I know there are a lot of mimicries but for now it appears Lyme is less of a concern as both my ELISA and Western Blot were negative.
I am going to strongly request a referral to a neurologist. Has anyone else here experienced this progression of symptoms? In your opinion should I have a spinal tap and/or MRI done to R/O Ms or is it too early at this point for those tests? (MS is a diagnosis of exclusion, made when other more likely possibilities have been ruled out. There is no definitive test or imaging that can rule out MS.)
Thanks to anyone with the time to respond!

Welcome to ThisIsMS, cinsan58.

You ask, "Should I see a neurologist?" I have no medical background, but I believe that if you see a specialist about a problem, he is likely to find a solution only in his specialty; if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize."

As you know, your symptoms are consistent with many conditions You have started to work with your GP, you have ruled out Lyme disease; has your GP investigated further with these other tests?
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 (Many experts consider the HoloTranscobalamin, a.k.a. HoloTc, test to be most accurate, since it measures the usable, "active" portion of B12.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (Gluten sensitivity is a problem for many people; it can cause neurological symptoms.)
Lyme disease
HIV/AIDS
Hepatitis C and B

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.). These authors suggest that the serum B12 level (which measures total B12) should be at 1000 pg/mL or more if a patient presents with neurologic symptoms: http://b12awareness.org/could-it-be-b12 ... diagnoses/

Thanks for the reply. The rheumatologist IS advising I see a neurologist next. But here's a kicker: MY B12 levels just came back HIGH. Sure didn't expect that.

cinsan58 wrote:Thanks for the reply. The rheumatologist IS advising I see a neurologist next. But here's a kicker: MY B12 levels just came back HIGH. Sure didn't expect that.

If you are advised to see a neurologist, that should be the next step. If further investigation is necessary, you might ask to see a hematologist after that.

Being a registered nurse, you probably know that vitamin B12 is carried in the blood on one of two transporter molecules (haptocorrin or transcobalamin). The "serum B12" test measures total B12 carried on both transporters. Only the B12 bound onto transcobalamin (6% to 20% of the total) is able to enter and be used by the cells.

It is possible that your high level of B12 is carried on the wrong transporter, or that you even have a transcobalamin deficiency. It is possible to have an apparently adequate amount of B12 in the blood, but still be deficient in the tissues (cells).

Another misleading factor could be in your lab's definition of "high" – it is accepted by many experts that the reference range for serum B12 in US labs is set too low.

I actually think you are on to something with your B12 remark. Even though I came here wondering if I have MS, I am leaning more toward another autoimmune mimicry. I saw a neurologist and he does not feel I have MS because my deep tendon reflexes are normal. But my ANA is now up to 640 and I continue to have very troubling numbness and tingling in my feet and lower legs and weakness as well. All I know is SOMETHING is wrong, but no one seems sure what it is. I will be having an EMG next week.
Thank you, Family Elder. Even though I am an RN, it's been a long while since I was taught about B12 metabolism.

twenty years ago I had the same symptoms, I told my GP my left leg felt like it was sunburn and then it would jump to the right leg. He immediately sent me to a neurologist and the neoro immediately did an MRI and within a week I was dx with MS. There was no blood tests no rule outs no expense some people go through when being diagnosed. No doctors opinion or blood work can give you dx of ms only an mri can do that. Go for the MRI.
I have been on Copaxone since 1996, I am still working full time in the healthcare field, I walk with a cane and I have started ampyra it really has helped me with balance and confidence that I can walk better and faster. Dont waste time get that mri and get started on the ms drugs. I am 63 years old and I have been so lucky and blessed.