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Neurology (Expert Forum)
I can't seem to remember things and sometimes forget where I am.
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
I can't seem to remember things and sometimes forget where I am.
by attheendofmyrope, Mar 31, 2006 12:00AM
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'>
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'>
Doctor's Answer
by CCF-Neuro-M.D.-PW, Apr 08, 2006 12:00AM
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'
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'
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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.
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.
Good luck
Graham
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
Good luck
Graham
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.
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.
Good luck
Graham
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.
my new b12 level is 307 but am still numb. My doctor thinks everything looks good. Should I see another doctor?
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 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.
Good luck
Graham
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.
Good luck.