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Hey, had a recent Neurology exam for first time and I didn't do so well. The night before both my legs went numb and I couldn't walk. That morning I kept having my knees buckle and felt like I had "sea legs". Anyway, I had upper Right hyper reflex, and right sided hemiparesis. I also had trouble walking with one foot in front of the other. I have not been diagnosed with anything other than Lupus, ranaulds, and fibromyalgia. Do these findings suggest anything to anyone? I am waiting to have a mri and eeg done, had a seizure recently.

"Do these findings suggest anything to anyone?"

What did your doctor say? If his/her answer was lupus, ranaulds, and fibromyalgia, it would seem your doctor is on top of your situation.

He said none of those things should cause what I am experiencing, unless Lupus is in my brain, cns. But I recently had my first normal ana come back so now my new rheumy is questioning what has already been a confirmed diagnosis. So if it is Lupus, my understanding is that would be the most severe form and therefore my ana should be as high if not higher than it has always been. The neurologist has ordered the mri/ eeg to check for disease activity.

Pretty much all the autoimmune diseases are related. And yes, Lupis can cause the symptoms you are experiencing.

Be patient as the doctors try to figure out what is going on with you. Sometimes it can take some time...

Thank u, I appreciate it. It's just scary not being able to walk because I can't feel my legs and legs and arms are burning so bad. I'm scared because now the Doctor's are questioning what they have told me for years, re: lupus diagnosis. But I feel far from "normal". Thank u for your advice!!!

You responded to my vitamin D suggestion in your Introductions post that you were aware of the lupus-vitamin D connection. If you have not already, I urge you to request a vitamin D test (the 25-hydroxy D test).

Having recently discovered that the symptoms of hyperparathyroidism are eerily similar to those of MS, I encourage you to request a parathyroid hormone (PTH) blood test as well. (PTH is often elevated when the vitamin D level is low.)

And, if you are willing to share, we are interested to know your test results.

I did request those tests as well as the Vitamin B deficiency tests, and I am still waiting to hear back. Although, the Neuro spent no time whatsoever talking to me about a vitamin defiency just about Lupus or some other unnamed disease. Then he said if nothing showed up on the mri he would start treating the symptoms even though he admitted he wouldn't know the cause of what he was treating. So there was really no mention at all about everything being cause by a vitamin def., but he could be blinded by the previous Lupus diagnosis, who knows. I just thought that being the simplest explination he would of said more about that than the unnamed disease. I will definitely share results. An autoimmune disease is scary no matter which one it is and I know that answers can be slow and frustrating. I am always willing to pass along anything that might help someone else in a similar situation.

MonicaTrip wrote:I did request those tests as well as the Vitamin B deficiency tests, and I am still waiting to hear back. Although, the Neuro spent no time whatsoever talking to me about a vitamin defiency just about Lupus or some other unnamed disease. Then he said if nothing showed up on the mri he would start treating the symptoms even though he admitted he wouldn't know the cause of what he was treating. So there was really no mention at all about everything being cause by a vitamin def., but he could be blinded by the previous Lupus diagnosis, who knows. I just thought that being the simplest explination he would of said more about that than the unnamed disease. I will definitely share results. An autoimmune disease is scary no matter which one it is and I know that answers can be slow and frustrating. I am always willing to pass along anything that might help someone else in a similar situation.

I am cynical enough to believe that if you see a specialist about a problem, he will 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."

If your neuro is reluctant to pursue blood tests for possible vitamin deficiencies, ask your GP to order the tests or ask for a referral to a hematologist.

Oh, I'm sorry, he did order the tests, I just haven't gotten the result yet. I know Doctor's don't know everything, believe me!!

MonicaTrip wrote:Hey, had a recent Neurology exam for first time and I didn't do so well. The night before both my legs went numb and I couldn't walk. That morning I kept having my knees buckle and felt like I had "sea legs". Anyway, I had upper Right hyper reflex, and right sided hemiparesis. I also had trouble walking with one foot in front of the other. I have not been diagnosed with anything other than Lupus, ranaulds, and fibromyalgia. Do these findings suggest anything to anyone? I am waiting to have a mri and eeg done, had a seizure recently.

Glad to hear your doctor ordered the tests.

Misdiagnosed Vitamin D Deficiency (9 min.):
with James E. Dowd, MD


Interviewer: … a lot of doctors still aren't seeing this as a need to get tested for, vitamin D deficiency is probably still misdiagnosed as a number of other things… Is that correct?
Dowd: Yes, it probably is overlooked in a number of different diseases.

@0:55 Another example of a disorder that is sometimes misdiagnosed and is vitamin D deficient is fibromyalgia, which is one of these chronic pain disorders….
@1:25 I'm not saying that everybody with fibromyalgia has vitamin D deficiency, but probably 70% do because 70% of the population is deficient
@1:43 There are occasional patients with fibromyalgia where that is the primary driver of their pain and fatigue and misery; and when you correct that they get dramatically better.…

Update: Had an eeg test yesterday. Everything, as far as I know went fine until the flashing lights. When it got really bright and sped up my left leg started getting stiff and jerking. When the test was over my left knee kept buckling under me and my legs felt weak, rubbery, and shaky. Then later and even now I keep getting burning and aching in the knees. Haven't heard from Doctor yet about anything, not blood work, nothing. I didn't have a seizure.

Heard from Neuro- my thyroid is a little low, and my b12 and vit D are normal, I am not deficient. Would a hardly low thyroid cause numbness, knee buckling and spasticity?

MonicaTrip wrote:Heard from Neuro- my thyroid is a little low, and my b12 and vit D are normal, I am not deficient. Would a hardly low thyroid cause numbness, knee buckling and spasticity?

Low thyroid function can cause numbness. In fact, it is in the second entry listed by the University of Chicago when investigating the cause of peripheral neuropathy (numbness/tingling):

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

You write that your "b12 and vit D are normal" – What does this mean exactly? What are your actual number results? The reference ranges set by US labs for "normal" are considered by many to be too low. In Japan, any B12 level lower than 500 pg/mL is considered a deficiency and is treated.

Current research by the GrassrootsHealth organization in California (http://grassrootshealth.net/) recommends maintaining a range of vitamin D from 40 to 60 ng/mL. Some neurologists have recommended a range near 100 ng/mL (80-100 ng) for MS patients.

The Doctor has mailed my results so I don't have an exact number. But the office told me I was not deficient in Vitamins B or D. Looked at low thyroid- does not really line up with everything I am experiencing. And the odd thing is a year ago they told me it was barely elevated now they are saying it is barely low. So I guess something is clearly going on with it. But a low thyroid doesn't cause hemiparesis, numbness like I am experiencing, knee buckling, spasticity, or burning tearing feeling in limbs, at least not according to anything I have seen online or in any of my med books from being a cna. And everything I read said having barely low levels usually means little to no symptoms are felt/ displayed. It's just I'm 33, played soccer most of my life and am not remotely a weak person so the inability to walk is getting to me. I never know when I am going to have a problem; I don't trust my own legs!!! The Neuro doesn't seem to think that it is only the thyroid.