No such thing as too high a B-12 level, it is not considered toxic. Are you taking supplements that have B-12 in them? Low B-12 levels can give you MS like symptoms and if you have a "low normal" B-12 level less than 400 most literature suggests testing the MMA and homosystine levels to see if you actually are deficeint in B-12. Your lab results are suggestive of Lupus, I would see a Rheumatologist to help you interpret results. There are many signs/symptoms of MS and Lupus that mimic each other.
Thanks for the response. Not taking supplements. Just wondered about the "flagged" B12 level. Thanks, again.
Hi, there. MS is not a disease that is diagnosed on blood tests. The only use of blood test is to look for things that might mimic MS. The high B12 sounds like a lab error - they do happen with some regularity.
The low + ANA titer of 1:80 is nonspecific and the speckled pattern is the most common. In true lupus the ANA is generally (not always) much higher and the pattern is "homogeneous." I recently did a little research on how often healthy people without clinical evidence of disease have a positive ANA. A +ANA occurs in up to 15% of the healthy population with a higher incidence in first-degree relatives of people with auto-immune illnesses. In a study of 125 healthy people with +ANA (and no mention of family history) titers of greater than 1:40 were seen in 32%, greater than 1:160 in 13% and only 3% had titers that were greater than 1:320. VERY high titer is unusual and fairly rare in the absence of clinical disease. Usually insignificant false positive titers are very low, in the 1:80 and below range. And the most common false postive pattern is speckled.
Your sed rate is a little elevated. Not hugely, but enough to make a doc look further.
Now, you had that blood work for a reason. It's not really fair to ask for a diagnosis without any fral information. You are worried about something. What's been happening to you? I am a physician with MS and on this forum we often try to give an idea if MS or something autoimmune, or whatever seems to be in the picture. You're welcome to stay and tell us a little more.
Hi. Thank you for your reply. Yes, I am new here.Wasn't really looking for a Dx, just direction/answers (same thing?). My concern was/is possible MS. MS and Lupus share a lot of the same symptoms, (as you know).
Slipped and fell in water that was leaking from the ceiling, (at work). Landed on my head, which bounced twice of the concrete floor, Neck/head pain and I was dazed. MRI=C2/3 through C6/7 posterior disc herniations, stenosis, foraminal narrowing. Radicolopathy, tingling and numbness into L arm, hand, memory, cognitive problems, intense head pressure, ringing in ears, L eye pressure, blurring/double vision, tingling and weakness into both my legs. Heat intolerant. That’s the condensed version.
My research indicates that there is a CNS/Brain type of Lupus. Not sure what to think. If MS is contagious (which they say it’s not) I have 5 close friends that have tested + in the past. Funny, (but till now), I never considered it might be possible.
My other theory is the Hep B vaccine but that’s another story…
Thanks for your time, help and advice.
Well, welcome to to our club of the searching souls with a multitude of symptoms. With the spine issues is there enough nerve impingement seen on MRI to account for the radiculopathy? I am not a rheumatologist, but I assume you're speaking of the CNS vasculitis that can be seen in Lupus, causing neurological symptoms. The people (teens) with lupus that I've treated all had Sed Rates much higher and higher ANA titers with a homogeneous pattern.
Ahhh.. the Hep B vaccination. That immediately brings to mind, depending on how long these symptoms have lasted (less than 8 weeks) Guillain-Barre, (longer than two months) CIDP (Chron Inflammatory Demyelinating Polyradiculopathy) . Many people with CIDP I think have erroneously been diagnosed with MS, but, it is not my area of expertise. CIDP is often triggered by a viral infection or by a vaccination. Hep B, and the Influenza vaccine are often implicated. CIDP is diagnosed by characteristic history, findings on physical exam, evidence of demyelination on Nerve Conduction Studies and elevated protein in the spinal fluid. CIDP sufferers re[port fatigue, cognitive problems, autonomic problems, cranial nerve involvement and heat intolerance.
Nerve Conduction studies will show conduction block or marked slowing diffusely , plus a couple other abnormalities.
There is has never been any good data to suggest a "contagious" cause for MS. However, there continues to be suggestion of a viral activation in genetically/ethnically susceptible people along with the proper environmental factors which may include lattitude of childhood, amount of sunlight exposure prior to age 15 or so. The viruses most often implicated are those to which essentially 100% of the population are exposed and about 95% get.
Have I touched on your "other story?" There are reports of clusters. The Pacific Northwest is a hotbed of MS and apparently some spooky clusters near the great lakes.
Hang out with us. I'm interested in hearing your story - told as a timeline - the order in which everything showed up.
Thanks for the nice welcome.
A lot of information to digest/think about.
I do have a Lyme Titer pending and need to go for a (Brain) MRI...waiting for all the labs to come back.
I will post/update as things develop.
The timeline...very good point...Nice suggestion. I'll see what I can do. Would you use this for research? I'd be interested to hear your views/outlooks on MS.
Thanks for all the information.
Great! I need to clarify a couple things I said which were wrong or misleading, CIDP stands for Chronic Inflammatory (or Immune) Demyelinating Polyneuroradiculopathy. It is primarily a disease of motor and sensory neuropathy (pain and weakness, loss of reflexes), plus the other stuff I listed.
2nd - Despite all reseach efforts to find a common trigger for MS, including infections, toxins, genes, and vaccinations, none have been found when you look at the good studies.
3rd - I suggested the usefulness of the timeline for you and for any one working on your diagnosis. I have no research interests and no particular view on MS. I and others here are convinced that inpeople with chronic illnesses or who have long, complex histories of undiagnosed symptoms, that formulating a concise timeline of the symptoms, evaluations, test results serves several good purposes. The first is that it brings it all together in your head in an easy to remember and refer to form. It provides you with confidence as you report it to others. It gives your "story" credibility and makes it much more likely that a new doc will listen and pay attention. On the other side, a well written timeline can and often does provide the diagnosis (or important clues) to a thinking physician who reads it.
We have a thread down a ways on this first page (I think) called "Timeline 101." That thread discuss some optimal ways to organize info. Many diseases, MS and CIDP, in particular often have a particular ebb and flow pattern which can be seen from a timeline and not from a list of symptoms.
I don't collect info, except to help me get to know people and to help me answer questions here. I am a fellow sufferer more than a physician. MS wasn't even on my radar as I was losing function over the last 2 and 1/2 years. My neuro assured me MS was not possible and I had no reason to doubt him. As more stuff happened I began doing my own research and realized that I had to have MS. I changed neuro's, showed him my timeline, and promptly got the diagnosis, which has since been confirmed. I watch what's happening in MS research and am learning a lot about my own new diagnosis.
My agenda here is very simple. I hope that this forum is a place to come for 1) support from people who are going through or who have been through the same things, 2) help with navigating the medical maze and help with directing a proper work up for MS and related things, 3) interesting and full of info, 4) a place to get questions answered 5) a haven for people who feel lost and scared either from unexplained symptoms or from doc's who have dismissed their complaints as psychosomatic.
My role here is very simple and straightforward.
Again, Welcome, quix
GM, Clarification is not needed. My agenda is the same as yours. In fact I am impressed that you can read people as well as you do. I meant no offence in any way, shape, or form (pun not intended-lol). The suggestions that you provide are right on. I don’t “think” that there is something wrong physically, I “Know”. My current Neuro did state that “something is going on” which is a +. I’m waiting for his clinical notes to be dictated. Interested to hear what he has to say…
Anyway, You stated the following:
“MS wasn't even on my radar as I was losing function over the last 2 and 1/2 years. My neuro assured me MS was not possible and I had no reason to doubt him. As more stuff happened I began doing my own research and realized that I had to have MS”.
This is where I am. Call it determination, or whatever, I will find my answers, and if in my quest, I meet people along the way that care and can provide suggestions/thoughts it’s a blessing.
Your “timeline” suggestion is a fantastic idea and I will look for it. I can use all the help I can get on how to gather/organize all this info.
Will keep you posted as things develop.
Hi Rea...If you need help with the time line, post what you can and we will help. I found in to be sooooo useful, and my neurologost took me seriously when reading it. In an odd way it gave me solid ground to stand on, so to speak, and made explaining things easier.
My doctor told me that I had an auto-immune disease which meant that I have symptoms of MS, Lupus, Chrones, Lyme, and several other diseases. I am taking steroids (prednisone) and I will also be starting Naltrexone in the next couple of weeks.
I'm being treated for MS and have a diagnosis of MS but that diagnosis is the doctors call because it could really be anything.
To me it kinda sounds like you have the same thing. Since MS is so hard to diagnose and most of the other diseases can be ruled out with blood test, that only leaves MS. Make sure you are tested for all auto-immune diseases.
I really don't understand anything that I just wrote, but that's how it was explained to me.
Good Luck and I'll keep you on my prayer list.
Hi, Thank you for your insight and encouragement. Today is a toast day for me. Trying to keep it light. Will keep you posted and thanks for making me feel welcomed.
Sorry you are not feeling well today. Post when you can...fell better soon!
Hi, I woke up this morning realizing in the flurry of newcomers I had not responded to your last post. I came online to find you and was stunned that your thread was already pushed to the 2nd page! You should not get lost in our shuffle! I think you have a lot to say, and our last interchange ended with your concern that you had offended me. OH, I do hope you haven't left!
No, no, no, I was not offended, but I did sound a little stern in my reply to your question of what my views toward MS were. Didn't mean to sound that way, I was tired and determined to get a point across to everyone who reads here. I don't want to foist any views I might have off on this forum just as I don't want someone to come on here and push an agenda on everyone. We need to be able to talk about MS and what is known, not known, suspected and what ways people are treating it. Being a scientist I will gravitate to ideas that have a more sound basis. I guess, that would be my bias.
Interesting that what struck you about what I said was my comment about MS sneaking in under my radar. That's exactly what happened. My old, "evil" neurologist had told me flat out that MS was not even a possibility due to my advanced age (53 at the time) and my normal (not!) MRI. So I was searching in an unbiased manner trying to figure it out, as he was pretty clear he thought I was faking it.
Yes, you KNOW when something is wrong. People with "health anxiety" (old term - hypochondriacs) use a whole different set of words when they post with symptoms. It's also that "knowing" that makes us feel so weird when we become certain, or highly suspicious that the answer is MS (or whatever). Then we want the diagnosis to be vocalized and sometimes people who haven't been in this position act like we want a disease. What the?!!!... No, we "already have something terribly wrong." We want an answer, a name, a known villain, a goal, a target.... Something definite is far bettter than the same symptoms suffered while floundering in diagnostic limbo!
I do have to admit. As someone who loves puns, I have tried to find the pun that you referred to and, for the life of me can't find it. Give!
I hope we hear from you before "something develops" unless it's a timeline or something. I found your post to be intriguing, and it made me want to get to know you. I hope you're still reading along.
Have you considered Lyme Disease? All of your symptoms would fit. Many people I know were misdiagnosed with MS, chrohns lupus etc. and finally found out that it was Lyme Disease. Check it out an get tested by reliable clinic - doesn't hurt to rule it out.