Hi. It was suggested that I visit this board. I have done a lot of research on my sx and have wondering about MS and CIDP. Finally starting to get my doctors to take me seriously!



Short History:

I had an onset of sensory symptoms, brain quakes/zaps and severe episodic vertigo 15 months ago that lasted about 3 months. Some of my symptoms never went away just became mild. I have had 2 more episodes with the last episode I have numbness and loss of vibration sensation in my right foot for a couple of months. The numbness is subsiding and the vibration sensation is coming back. Other symptoms: muscle twitching and spasms mostly from my mid body down however recently they have started in my arms and neck.

I have had 1 MRI w/o contrast(over a year ago). 3 very small non specific "white spots" were found between the junction of the grey and white matter (possibly angiopathic in nature). All blood tests are normal, diabetes, thyroid, vit. & mineral deficiencies have been ruled out. ENG/VNG show bilateral vestibular dysfunction of unknown causes.

I have recently had a NCV done on my right foot and leg which was abnormal. I don’t have the final report yet but I was told that there is slowing of velocity throughout the lower leg as well as conduction block in several nerves. They tested my right arm and noted similar results and polyneuropathy was mentioned. The left leg was not tested due to peroneal nerve damage and drop foot due to MVA 20 years ago.

The following are new sx over the last week:

On my right foot I can move my big toe up but not down. This is the one that is still numb underneath. I can move the little toe just fine. The banding feeling around the 2nd and 3rd toe has increased to include the 4th toe. I can't move toes 2,3 & 4 up at all. Approximately 6 inches of both forearms feel tight on top. Feels kind of like very light tingling.

If this sounds familiar to anyone I would love to hear from you.

hello, curious cause it sounds familiar to me , i have pernicious anemia, when you had your blood serum for b12, what were your numbers.

most doctors do not know anything about B12. If you can find your test results, please post them. We have a lot of research that has been done on proper B12 results. Let's start with your B12 results. That may tell us a lot.

Billye

Thank you for the replies. I November 2006 I went to my PCP due to weird dizziness.. not vertigo yet at that point. He ran blood panels and found my folic aid was really low and b12 was borderline. Have been supplements ever since and test results have been "perfect" ever since.

I don't have any of my blood test results anymore cause my last neuro kept my copies...forgot to make copies before I went. I will get copies again when I see my gp again. Is there another test for b12 other then the 2nd round after blood screen is abnormal?

I should also mention my father and grandmother had CMT. That said, my neuro said that is definately not the cause of my problems. I had genetic testing years ago and was told that if I did not hear back then I did not have CMT. I never heard back. I'm still going to see if I can track down the actual test results though.

do a search here on cmt and genetic testing, it was a hot topic here a few months ago. There are many types and not all are tested for.

"perfect" "borderline" ...these terms are meaningless since
many reference ranges exist.

Also, never assume that your test results are negative because no one called you. I have a friend who was NOT called regarding a positive mammogram, and only found out a year later when she went for another--- She was asked why she let this go from the previous test?----ended up with a mastectomy and chemo--and a law suit. (this was at a huge famous hospital no less) Many times doctors DO NOT call back.

Kitt here, is very knowledgeable about CMT testing. I suggest you PM her.

B-12 levels (that are acceptable), are absolutely ridiculous.

My level is 2000. I take sub lingual Methylcobalimin 5000 every other day. I started this every morning, but I store it well in my body (It helps me PROFOUNDLY) with my neuropathy. I'm a diabetic.

So if your B-12 levels are, let's say 800 and the doctor says "perfect", believe me, it's not perfect.

Physicians know next to nothing compared to what the folks on these forums know. About B-12 levels I mean.

Best of Luck

melody

I just did a search on pernicious anemia. I am totally floored by what I found!

the article I found suggested that it is common in A blood types and said something about antibodies I think. I am A RH- and I have a transfusion card because of weird antibodies due to blood transfusions. Now this in inself may not mean too much except with pregnancy BUT there is also a possible conndection to Helicobacter pylori which I HAVE HAD!

What tests do I need and what kind of doctor do i need to see to have this looked at?

I found my orginial folate and b12 tests from 2006.....not sure if this will help...as soon as i get copies of the more recent results I will post them.

folate, rbc 653 nmol/l

b12 362 pmol/l

alkaline phosphatase 105.
ast 20.
alt 13.

Does this make sense to anyone? LOL

Oh and .....the first page shows the following high lighted results....not really sure what that means except the is an up arrow beside them.

MCV 96.5
MCH 32.6

WBC DIFF.

EOSINOPHILS 0.13 1.14
BASOPHILS 0.02 0.18

I'm assuming that is the white blood cell count and it is high......just so you know....I don't have a spleen.

It looks to me like on the basis of that B12, you have an explanation for all your symptoms. I'd want to see proof that they are really good now, on the high end of normal, if not OVER the normal, before pronouncing you okay.

These are not okay.

If the MCV is over the limit of normal, that means the low B12 was affecting your red blood cells, and your body was sending out a lot of new, younger cells, which are bigger than the average cell. I don't know the range of normal MCV offhand, but if it's flagged, I'd guess it's high.

Please read Rose's stickies on B12 and how to make sure you get the right amount into your system.