I am a 45 year old female with a previous diagnosis of fibromyalgia, migraines, arthritis, vertigo, hot spots, and IBS along with several other things that go along with fibromyalgia. I also have very hyper reflexis. I have had them since I was young, but they seem to be getting stronger. I am now having problems with my short term memory, confusion and feeling dizzy. It has happened a few times that while riding in the car or driving the car I become disoriented and don't know where I am. Normally it doesn't last long, but once it lasted about 30 minutes and I was driving alone.
On a MRI I recently had done (with and without contrast) they found a questionable area, 2mm in size, of increased signaling in the subcortical white matter of the anterior right parietal lobe. They said it was best seen on FLAIR images. What is a FLAIR image?
I would like to know what this means. Does it mean there is a mass/tumor or a blood clot? They plan on redoing the MRI in 3 months, but that doesn't help me in the mean time.
The report says that the finding is nonspecific in nature and can be seen with small vessel ischemic changes; changes from hypertension, diabetes, demyelinating process as well as others. I know I do not suffer from either diabetes or hypertension and my cholesterol has just been checked and the good and bad are all in the prefered range, although they could still be improved.
Can you give me any idea what they are talking about here? I am not overly concerned, I would just like an idea of what this means. Thanks! <'o'>
A FLAIR image is a specific type of MRI image (there are different ways of showing the MRI images that show different things better). A FLAIR image is good at showing abnormalities within brain tissue - which show up as brght spots. FLAIR imaging is now included in most routine MRI scans. In the FLAIR image the bright signal of the cerebrospinal fluid is 'subtracted' out from the image so you can see other bright signals more easily
However, a few bright spots in the white matter are quite common in the asymptomatic general population, particularly as we get older. The most common causes are hardening of the arteries, and migraine. Much more rarely they can be caused by inflammation such as demyelinating disorders or vasculitis. Demyelinating spots usually have a charactgeristic appearance which allow differentiation from the usual 'bright spot'
Ah....small vessel disease. I had a finding like that on one of my MRI's too. Doc said people with migraines have findings like that..or it could be from hypertension or diabetes. In small vessel disease the tiny arteries in the brain close off. Don't worry unless you have a lot of them. However your memory loss and fog is so typical for fibro...plus it may also be a feature of migraines. I have both and my fog gets really baaaad. Welcome to Fibroland.
The ELISA test detects ANTIBODIES, not Lyme its self. Your body takes a few weeks to develop anti-bodies to Lyme disease, and similar to HIV anti-body test, it can and will be detected in the high 90 percentile range after several weeks of being infected. But ELISA can also detect other non-Lyme anti bodies, and the WB, a more expensive test narrows it down if there is a positive.
I had the exact same symptoms 2 yrs ago, only I drove for close to 2 yrs, only I was aware, but had no idea where I was going & was driving on & off the road and almost hitting trucks, etc. I was diagnosed with having complex partial siezures and have been being treated since. However, I was diagnosed by Janet Travell with Fibromyalgia in '87 and have been well aware of all the symptoms that go along with this lovely illness. Close to 1 1/2 yrs ago, I was told I have an airway blockage and the reason for my daytime "fog" is becaue I am struggling to receive oxygen to my brain because I was lacking sleep throughout the night - I would fall asleep & then 2 hrs later, wake up. I can fall back asleep, but wake up again n 2 hrs, sometimes very thristy. All signs that my airway was blocked and my body woke me up because I quit breathing. Fibromyaglgia patients, as we are all well aware, need our sleep, and without sleep for a few days, tend to drift during the day by going into a fog. Due to the airway blockage, this is why our muscles spasm so severely in our neck, shoulders, etc - struggling during the night for the air - this is my story & I wear an appliance all day & during the night to pull my tongue away from my throat to clear my throat so I can breath without obtrusion. I go back to my saviour in May for a new appliance because I am drifting again & I am in pain - I know when it is time. That is my story - it may not be the same, but if you wake up after a few hours of sleep, etc. It is something to look at
I'm not trying to sound "confrontational", but why is it that you think almost everyone with unexplained neuro symptoms has Lyme? You respond in many many postings with this same fear-mongering rhetoric. There is unwarranted hype on the web that the ELISA Lyme titer is highly innacurate. This is untrue. It it simply more likely to be a false positive, NOT a false negative. Imagine if you are running through a field with a butterfly net. The ELISA Lyme titer is a very wide net, and you may catch things other than butterflies. The Westerblot simply is a more expensive, narrow net to detect Lyme antibodies. Good luck to you all
are your memory problems constant, i.e always apparent,or waxing and waning? The reason I ask is because i too have had memory problems since Jan but mine has remained constant and I feel as if I have a permanent deficit. Along with the memory problems I have also found my speed of thinking and information proccessing to be quite reduced. Symptoms also appear worse when I am tired. I have other neurological symptoms but the memory problem is the most alarming as I am 34. I keep thinking that if I am getting this at 34 what will I be like at age 50 or 60. My dad is 73 (i am the last of 4 children) and in superb health physically and mentally (mum also and she is 68). I am awaiting the result of a CT scan and detailed blood testing. Will keep updates of my situation on this forum.
My memory lapses are fairly often, but not constant. I can deal with most as they last short periods or I can sometimes talk myself through them by repeating something I should know. However, it is when they last for an extended period of time and nothing I do seems to help bring me back. I do have problems sleeping. I either wake up a lot just because or sometimes I have dreams that I talk myself awake in. Often I can't tell my dreams from reality which is very uncomfortable also as I don't know the real life from the dreams and vise versa.
I do feel, at many times, like I am not getting enough air to my brain. I feel like I am going to pass out or at least fall down, but I just keep talking to myself hoping I can keep it from happening. Most times it works if I can sit down or find a place where I can lean against something for support. Mostly I am just very scared.
As for the fibromyalgia, I have been dealing with this for many years and am used to the fog that goes along with it. THIS HOWEVER, IS NOT THE NORMAL FOG. I am affraid this is going to cost me my job or even my life if it happens at the wrong time or in the wrong place.
Thank you for the suggestion of B12 deficiency. You sound like a very caring person and I really appreciate you taking your time to leave me this note. I did have this checked along with what the doctor called "dementia" bloodwork. My B12 was very normal as was everything else they tested for. (I take 2 multi-vitamins a day along with extra calcium.)
Hi, sorry you seem to have been having such a hard time.
I can't say I know what your problems is, there may be a few, but one thing I would definitely have checked is your vitamin b12 level.
It can cause many of the symptoms you mention, from fatigue to dizziness and poor memory. I had them all, and neurological symptoms, before they discovered I was b12 deficient. It is also very common to have stomach/bowel problems, as both you and I have, which can be the cause of the deficiency
Definitely get this checked, and even if you are not deficient, if you are near the low end of the scale, make sure they do other tests to either identify it, or dismiss it.
You wouldn't believe how many people with b12 deficiency go undetected, like me, until they end up with so many problems.
About 2 years ago,I would leave my girlfriends apartment (which I had been going to daily for 3 months) and I could not remember where I parked which was almost right in front of me and how to get out of the parking lot. It happened 15-20 times.Having no idea which way to go to get out was ridiculous to me.It was a simple right and an immediate left.I had an MRI of my brain done and they found some white or gray matter that may some how interfere with signals in my brain.The docs and I still dont know why my problem existed but except for rare occasions I have no more "Where the heck am I" problems. It was scary and frustrating. I hope other peoples similar situations dissapear quickly.
Hello again, I would have replied earlier, but I was away for a short easter break.
I'm glad that you have had your vitamin b12 tested and it's certainly a good idea to take vitamin supplementation in general.
I'm sorry to go on about this, but do you know what your vitamin b12 level was. I was told repeatedly that my b12 was absolutely fine. Having gotten copies of my levels taken over a period of years, it was obvious to me that my levels more or less consistantly dropped.
Even although they were all with the "normal range", they were in the low normal area and dropping down to borderline. Even although I brought this up with my doc several times, he repeatedly said there was nothing wrong with my b12.
Because of tinitus and hearing loss, I referred to a third neurologist, who completely dismissed me out of hand and would not even check my b12 as he told me that this had been looked at before.....and I needed to stop being obsessive about it. Two days later I arranged with a laboratory to have my levels checked, and by this time I was now clinically deficient. I also found out that my folate levels similarly decreased with my b12 levels.
Amazingly my doc was still unconvinced, and it was because of advice given by the neurologist on Medhelp, that again I arranged by myself for further samples to be taken.
When these results backed up the b12 deficiency, my doc sent me to a haematologist, who confirmed the diagnosis and I will be on injections of b12 for life.
I can't say that your problems are b12 related, but your symptoms, with the exception of arthritis, mirrored my own. I would get a copy of your b12 results, and see if they are in the normal range, but at the lower end.
The problem is that many doctors simply don't know how to assess a b12 result. They may take the view that as long as you are anywhere in the normal range, then you are ok. I know, very much to my cost, that this is not the case.
For example, If the normal range shows as 150-1100 pg/ml, then if you are between 150 and 245, then you are in the bottom 10%. My levels started at 289, when my symptoms were very slight, and as they worsened my levels dropped down through 235, 210, 202, 197, 189 and eventually in the 150's. I know that many doctors who have studied this, suggest that levels even in their 300's, can for some people be a problem.
What I can say for certain, is that it is not as straight forward as looking at a serum b12 level and deciding everything is alright. Incidently, if you bring this up with your doctor and he says that if you had a b12 problem, then you would also be anaemic, he is plain wrong. You MAY develop anaemia, but you don't have to. I didn't and again this misguided view delayed my diagnosis before I ended up with neurological damage.
Sorry this is so long, it's just that I feel I have been to hell and back, and if I can prevent someone else going through the same thing, then it will be worthwile me ranting on.
Ok, thats me done. I hope that you manage to get your health back soon
Thank you! I will double check with my doctors and see what the b12 levels were. Maybe they will even have some bloodwork done in the past that shows my b12 and I can get an idea if it is dropping or not. I know I will feel much better after they do the next MRI and I have something more to go on.
I am just emotionally drained that I feel like anything that takes me moving is almost beyond my abilities. I guess the term the doctors would use is depression for which I already take medications. I think anyone would be depressed if they hurt or just generally felt terrible all of the time, including the doctors.
< 'o' > attheendofmyrope (and the knot is coming untied)
I love all the details you gave about condition. I have had what they tell me is vertigo for several months now and started with numbness, extream fatige, just a felling of being in a fog all the time and have had ibs for years. I have had ct, mri and just found out my b12 level as of last december was 289. All the test came back fine. The numbness, dizziness and the tiredness is getting to me. I am going to have another blood test in a few days to check my b12 levels. My gp said no to b12 shots and that more than likely b12 vitamins would not help. Any suggetions on your experieces, and if you cold suggest my next move. I did not listen to my doctor and I did get b12 vitamins of 500 mcg and plan on taking them in addition to a multi vitamin because I need help now not later. I am hoping I get some relief. Any info you can give will help.
Hi. It was only as I was checking something over that I realised a later post had been added. I'm sorry I didn't check before or I would have replied earlier.
It's a strange coincidence, but when my problems started many years ago, my first recorded vitamin b12 level was 289pg/ml (on a normal scale of 150-1100pg/ml) which is the same as yours. My symptoms at that time were also pretty much like your own.
What I know now from the reports I have read and people I have spoken to, most a great deal smarter than me, is that vitamin b12 deficiency, and the levels at which it can cause physical problems varies from one individual to another. Doctors who simply take the view that if you are within the range, then you are ok, are trying over simplify a complex condition.
Obviously because of my own problems, starting at the same level as yourself, I would not let this lie without taking further opinion and making sure proper testing either identified or ruled out b12 deficiency.
It is good that you are arranging to have your b12 levels retested. I'm not sure if you have started taking b12 supplement, I know you said you were planning on starting. If you havent started already, and as long as you are going to get proper tsting done fairly quickly, I would hang off taking it untill you have results. If you have started, I would still go for tests as you may not have managed to get your levels up yet.
If your b12 is still within the same range, and particularly if it has dropped further, then you should ask for further testing which can help identify true tissue b12 deficiency, even whilst your serum b12 level is within the so called "normal" range. Tests such as homocysteine and methylmalonic acid are likely to be elevated if you have a deficiency. I know that serum Holotranscobalamin is a test which is said to also identify deficiency whilst within the serum b12 range.
There just seems to be such a misunderstanding of this condition by some doctors within the medical profession, that there are bound to be many people who are either misdiagnosed, written off as anxiety sufferers, or simply ignored.
I hope that you manage to get your problems sorted and are back to good health soon. If you have had tests done, or are having them done, I would be really interested to hear how you got on.
I have experienced similar symptoms. Was diagnosed with fibromyalgia, but would not let the docs quit. I know sometimes there are no answers, but I didn't believe that was me. Turns out the memory problems, muscle and joint pain, and confusion all were part of sleep deprivation - many years of obstructive sleep apnea and periodic limb movement. I'm also being tested for narcolepsy with cataplexy and central sleep apnea. I can't say enough for getting a sleep study that tests both for OSA and PLMD. I shudder to think how many others have been prematurely diagnosed as fibromyalgia! Surely I'm not the only one.
I did get retested and am waiting for the results. However since I have written you last my right side of my face, neck and oddly enough the right side of my belly are all numb???. I am still on and off get dizzy, but now and have had several ear infections. I will let you know what I find out. If I b12 are still low should I still have that addtional testing you wrote about? Thanks for your thoughts.
I saw my gp and he is sending me for another mri with contrast. My methylamalonic level was 234 (10) away from out of the normal range and as I said before my b12 was 307. I took the test three days after I stopped taking supplements of 1000mg of b12. I believe he is conviced it is MS. Can you let me know your levels prior to be dignosed.
I had,had an mri and ct in dec/jan both were fine. Because of my numbness my doctor wanted me to have a mri with contrast right away. No MS or Stroke. I did take the B12 pills up until three days before my last bloodtest and have started to take them again. The numbness has subsided a little but now I have tingling all over and this tingling makes me itch.
I fell like I am rewritting your story. Saw my nero today and he insist that b12 has nothing to do with my condition. He is now sending me for another mri of my cervical spine. He actually said to me could this be all your nerves causing this numbness. I can see a panic attack, but numbness. I am not sure how I can induce numbness to myself. I go to the blood doctor in two days and have stopped taking b12 pills just incase she wants to do a blood test which I am sure she will. Your thoughts would be helpful.
Saw a blood doctor and she said because my b12 was 307 not to think it was a b12 def. She said I could take the pills and see if it helped. I don't know I am out of doctors to see I beginning to think I am going CRAZY. A CRAZY PERSON WITH A NUMB DIZZY BODY!!!!!!!!!!!!
Hi, I am sorry I couldn't get back to you sooner, my mum was in hospital and when she came out I had to be with her for a couple of weeks untill she got back on her feet. Unfortunately she doesn't have a computer and I couldn't check the site.
I really know how you feel, and I can well imagine the kind of dismissive attitudes you face.
The problems in identifying b12 deficiency is made harder because you have been taking b12 orally in the high doses that you need to up your levels. Even if you do stop for a few days before a test, b12 is not something which changes very quickly, that is one of the reasons that it creeps up on people over a long period of time.
You asked about my levels when my deficiency was identified. As I said before, my first level taken when I was having problems was 289, which I think was the same as your first test. My levels were tested a number of times, over a number of years and almost without exception dropped, even if only by slight ammounts ie, 289, 210, 189, 182, 179 and evetually deficient about 150. I now know that that my b12 levels were all, without exception, in an area which can cause exactly the same problems as someone who is deficient. It sounds incredible to say this, but 3 neurologists, 1 gastroenetrologist, 1 virologist and 2 GP's completely missed this. What I do know is that there are so many people in the medical profession that wouldn't know a b12 deficiency if it jumped up and bit them on the ***!!!!!!!!!!!
The thing is that you don't know to what extent your b12 supplementation has upped your levels. Even then, I still think that they are pretty near the lower end of normal. Many studies have indicated that people can be deficient, especially if they show neurological symptoms, under 400pg/ml. In Japan if you show neurological symptoms, and they don't think you have a neurological disease, and if your b12 is below 5oo pg/ml then they treat you with b12.
When you are low normal it is so important to check other indicators, such as methylmalonic acid and homocysteine, to show if your tissues are deficient, not just the serum b12 level in yout blood. The fact that your methylmalonic acid level was right at the top of the normal scale, when you have been supplementing with high dose b12, I think very much points towards this. I'd like to bet if you hadn't taken b12, your MMA would have been higher. b12 lowers elevated MMA
I don't know how much more you could push getting someone to realise that b12 is very likely a factor. I know the blood doctor said your last level was ok, although it's still not very high, but did they take into account that you have been taking b12.
The thing is that the longer that treatment is delayed, the worse the symptoms become. This being the case, I would just make sure that you take sufficient quantities of b12 daily (between 1000 and 5000 mcg).
I can't say you don't have a neurological condition, but I do know that your b12 level was in an area that very badly effected me. You also mentioned that some symptoms were worse or different even after starting b12. I have spoken with people and read many personal accounts that talk of worsened or strange neuro symptoms after starting treatment. It seems that as the body starts to repair itself from the damage that has very likely been ongoing for years, it can do some strange things. I have certainly noticed some downs before I recognised improvement, but slowly.
I know this must seem like a nightmare that just never goes away, I know it nearly got the better of me. There is nothing worse that knowing something is wrong, and getting worse, and knowing that the people who can perhaps do something about it, are simply not particularly interseted because you don't fit into an instantly recognisable condition. Doctors become to dependant on lab levels, without looking at the overall picture.
Try not to let this get to you, hard as that may be. Believe me it only makes things worse. If your b12 is causing your problems, and I think it certainly is likely to be a factor, just make sure you are taking all you need and you should start to show some improvment. Remember that if you are not absorbing b12, for whatever reason, then you may well be not absorbing other vitamins and minerals as well as you should.
Try and take good care of you gut, thats where you absorb b12 and other vitamins. Probiotics etc would be a good idea and also a general good vitamin supplementation programme.
You are definately not, as you mentioned, going nuts. Don't let them get to you like that. I really hope that you start to feel better soon.
You might like to joing the braintalk site, it is very good and you get good information and support. I use the Peripheral Neuropathy forum, you can log on at http://brain.hastypastry.net/forums/forumdisplay.php?s=88c5a71609ede96b17cf006f46292a96&f=206
It doesn't cost to join and you might feel better when you realise how many have gone through what we have. It would be nice to hear how you get on.
Re B 12 and Pernicious Anemia. If you have Pernicious Anemia, you either need sublingual (dissolve under the tongue) or Injections. I do both. My neuro says that blood level B 12 of 400 may work for normal people but he has never found it effective for PA patients.
When you have no IA (intrinsic factor) in your stomach, you can not obsorb B12 like normal person. A test for the IA factor can be done with simple blood test.
My daily sublingual is 1000. Then I give myself injection of 1000 every 2 weeks. Again, many docs just do monthly, but my neuro said that those of us with Pernicious Anemia often have symptoms at two weeks. We are a special breed (tee hee).
I am grateful for finding a good doc. It took 2 years and goiing through 7 docs who did not have a clue.
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