Cerebral atrophy and one UBO. Could these be early MS?

[cognitivelydissonant]

Hello,

I've been suffering on and off with a host of neurologic symptoms for the past 10 years. Lately, they've been REALLY bad, so I'm back to grasping at straws trying to figure out what could be wrong with me.

I have seen three neurologists. The first one said there was brain atrophy on my CT scan, but he just shrugged it off and said it was insignificant. The second one said there was a UBO (unidentified bright object) on my MRI, but it was too small to mean anything by itself. The third neurologist was in the same neurology practice as the second one, so he just looked at the other guy's notes and essentially told me, "The other doctor told you there was nothing wrong with you, so I don't know why you asked to see me. The answer is still the same. There's nothing wrong with you, and you need to go to a psychiatrist."

I KNOW there's something wrong with me, though. Is it possible that a single tiny UBO and celebral atrophy could be early stage MS, or should I cross it off of my possibility list and not bother trying to seek out a fourth neurologist?

[lyndacarol]

Hello,

I've been suffering on and off with a host of neurologic symptoms for the past 10 years. Lately, they've been REALLY bad, so I'm back to grasping at straws trying to figure out what could be wrong with me.

I have seen three neurologists. The first one said there was brain atrophy on my CT scan, but he just shrugged it off and said it was insignificant. The second one said there was a UBO (unidentified bright object) on my MRI, but it was too small to mean anything by itself. The third neurologist was in the same neurology practice as the second one, so he just looked at the other guy's notes and essentially told me, "The other doctor told you there was nothing wrong with you, so I don't know why you asked to see me. The answer is still the same. There's nothing wrong with you, and you need to go to a psychiatrist."

I KNOW there's something wrong with me, though. Is it possible that a single tiny UBO and celebral atrophy could be early stage MS, or should I cross it off of my possibility list and not bother trying to seek out a fourth neurologist?

Welcome to ThisIsMS, cognitivelydissonant. You are not intruding; we are glad you have found us. We have many members who, like you, are undiagnosed but KNOW they have a real problem or have gone through a long process to diagnosis – you know best when there is something wrong. The doctors have not identified it yet. We do not have all the answers, but are willing to share our opinions. We each have our unique ideas and experiences with MS and the medical process. Share with us your experiences, ask your questions, and just vent when you need to – we are good listeners.

Here are my thoughts: compare your experiences with your 3 neurologists to the suggestions by the University of Chicago for an initial neuro exam. There is no single definitive test or exam to diagnose MS; the diagnosis is made by ruling out other possibilities.

http://peripheralneuropathycenter.uchic ... #bloodtest


Especially important is this section on blood tests:

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 (Zinc, magnesium, vitamin D, and copper are also recommended by jimmylegs, here at TIMS.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (I suggest a "fasting blood insulin test" – NOT the same as a glucose test – also.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (I think this is VERY important, as well as a mannitol-lactulose test for Intestinal Permeability.)
Lyme disease
HIV/AIDS
Hepatitis C and B

Just this week on Monday, 12/2/2013, Dr. Amy Myers, M.D., was on The Dr. Oz Show speaking about newly recognized warnings of gluten sensitivity (headaches, migraines, brain fog from inflammation, nutritional deficiencies - of zinc, iron, B vitamins, omega-3's, vitamin D - skin rashes: http://www.doctoroz.com/episode/gluten- ... t-epidemic

You have mentioned headaches, dizziness; maybe other symptoms could be described as brain fog.

I wish you all the best.

[cognitivelydissonant]

Hi lyndacarol,

Thank you for your response and your warm welcome!

My neurologists never did any electrodiagnostic testing. They only did basic neuro exams like having me pull on their arms, follow their fingers, etc. and then did a CT scan and two MRIs. I have no idea how I would even go about asking for tests like that. They don't listen to me when I ask if there's anything else that can be explored. They just tell me there's nothing wrong with me and to go home, basically. My first neuro did do basic blood work on me since he had none on file, and that showed that my B12 was low. It's not anymore, though. It's almost 1,000 now that I take supplements. I don't think the testing covered all of those advanced tests on the list you provided, though.

As far as symptoms, I have several but have learned to avoid listing them unless people ask me, lol. It seems like symptom lists don't really help people come up with ideas as much as I thought since symptoms are similar for so many different conditions, and plus, I feel like the more symptoms I list, the more people think I'm crazy. However, since you mentioned a few of the ones I mentioned in another post (headaches, dizziness, and 'brain fog'), I'll list some of my other problems.

* random numbness in various parts of my body. For instance, one time, the top half of one of my legs went numb for three days. Sometimes my tongue gets numb, and sometimes it'll feel like I have diminished sensation in my skin.
* frequent urination -- Some days I run to the bathroom every 10-15 minutes
* A feeling like there's a lot of pressure in my head/brain
* My eyes get this unfocused feeling sometimes that makes me nauseous, so then I start to gag
* Auditory hallucinations when I'm exhausted
* Shaky hands
* A feeling like I'm not getting enough oxygen to my brain
* Diminished sense of taste and smell
*Trouble enunciating words at times
* Sensitivity to flashing lights
*Balance issues

The main issues are the cognitive problems I mentioned in the other thread, though. If I could just be able to think straight again, everything else would be way easier to deal with.

[lyndacarol]

My neurologists never did any electrodiagnostic testing. They only did basic neuro exams like having me pull on their arms, follow their fingers, etc. and then did a CT scan and two MRIs. I have no idea how I would even go about asking for tests like that. They don't listen to me when I ask if there's anything else that can be explored. They just tell me there's nothing wrong with me and to go home, basically. My first neuro did do basic blood work on me since he had none on file, and that showed that my B12 was low. It's not anymore, though. It's almost 1,000 now that I take supplements. I don't think the testing covered all of those advanced tests on the list you provided, though.

As far as symptoms, I have several but have learned to avoid listing them unless people ask me, lol. It seems like symptom lists don't really help people come up with ideas as much as I thought since symptoms are similar for so many different conditions, and plus, I feel like the more symptoms I list, the more people think I'm crazy. However, since you mentioned a few of the ones I mentioned in another post (headaches, dizziness, and 'brain fog'), I'll list some of my other problems.

* random numbness in various parts of my body. For instance, one time, the top half of one of my legs went numb for three days. Sometimes my tongue gets numb, and sometimes it'll feel like I have diminished sensation in my skin.
* frequent urination -- Some days I run to the bathroom every 10-15 minutes
* A feeling like there's a lot of pressure in my head/brain
* My eyes get this unfocused feeling sometimes that makes me nauseous, so then I start to gag
* Auditory hallucinations when I'm exhausted
* Shady hands
* A feeling like I'm not getting enough oxygen to my brain
* Diminished sense of taste and smell
*Trouble enunciating words at times
* Sensitivity to flashing lights
*Balance issues

The main issues are the cognitive problems I mentioned in the other thread, though. If I could just be able to think straight again, everything else would be way easier to deal with.

Most of us try to find doctors willing to work in partnership with us – a medical team. When I present my case asking for a particular test, I include evidence of the pertinent studies and papers; I usually send these to my doctor before my appointment so that he has time to consider my request. Not all doctors have an interest in MS or have personalities that work with mine; over time, there have been changes in my medical team.

As for symptoms, I compile a list (in the calm at home) and hand it to my physician for discussion (and so that I don't forget anything). If by "people," you mean friends and family – nonmedical professionals, I, like you, don't bring them up unless asked. But here at ThisIsMS, it is a different world: no one will think that you are crazy; if you have questions about particular symptoms, please ask (we may not have the answer, but we usually have an opinion!).

My personal hypothesis these days includes gluten sensitivity leading to increased insulin (Did you know that two slices of whole wheat bread raises blood sugar more than a candy bar?), which results in insulin resistance and its effect on muscles and cells.

Applying my unique ideas to your symptoms:
Excess insulin thickens and stiffens smooth muscles; the detrusor and sphincter muscles of the urinary bladder are smooth muscles; it seems logical that the insulin interferes with the coordination of muscles and proper function of the bladder. OR simple irritation of the bladder (insulin is very irritating) may cause increased urinary frequency.

I also believe that insulin damages the inside of blood vessels (which also have smooth muscles in the walls) – noticeably in the small blood vessels or capillaries, first (eyes? extremities/hands?). Shaky hands may result from muscles (agonist and antagonist) also failing to work in tandem.

As I mentioned in my earlier post, this presentation may explain some cognitive issues: http://www.doctoroz.com/episode/gluten- ... t-epidemic

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases – I'd like to get my hands on that study article; I wonder if MS is included in the "55 diseases."

I have no formal medical background. As you can see, I collect information from everywhere – even Dr. Oz! I look forward to the contribution of your discoveries, too. MS is a big "elephant" and each of us "blind men" is examining a part, as the Hindu fable goes. I'm glad you are here.

[want2bike]

Be careful believing anything the stupid medical world tell you. When they can't put a name on a disease it is easy to say it is all in your head. If you find a holistic doctor he may be able to figure it out. There are many things out there which can effect our nervous system so we must try and identify the toxins and eliminate them. You should consider all the GMO food and process foods which have chemical in them that effect our nervous system. My problem was the amount of dental work I had done. Too many root canals and amalgam fillings. Stop worrying about the name they put on your problem and start doing what you can to help get rid of your symptoms. Dr. Bergman explains it pretty simple. Start juicing and eating only fruits and vegetables for a couple months and see if your symptoms go away. If they do you can start eating other things but pay attention to the body. If you start eating something and your symptoms come back you know you can't eat it. It is up to you to figure it out.






http://orbisvitae.com/ubbthreads/ubbthr ... qIV3cKA3IU

[RyanYum]

a common neurologist really isn't trained to think outside of the box with problems that you are having, you should get yourself checked into a research hospital even if it costs you an arm and a leg. If you have an hmo like kaiser you could even fly out to california and go to the one they have on sunset, if you really want definitive results i'd recommend going john hopkins this will all be out of pocket of course. But it's better than waiting for a medical team who tells you nothings wrong with you when you have brain atrophy and weird symptoms. I'd also recommend getting genetics testing done to see what your at risk for. You could probably end up paying 99 dollars for it, even if it's not done through a health care provider.

[cognitivelydissonant]

When I mentioned not listing symptoms because it makes people think I'm crazy, I was actually thinking more in terms of doctors but also laypersons as well. It seems like, if I mentioned two or three problems, doctors are usually likely to work with me to try to figure out what's going on. If I give them a list of 12 symptoms, then their minds jump to "There's no such thing as a condition that causes of all of these problems. This is obviously just a conversion disorder." My last neurologist actually told me that the fact that the symptoms were "all over the place" told him that I had a psychiatric problem. I did bring a list of symptoms to my old GP once, and she said "This is all anxiety" and handed the paper back to me. I brought the list with me when I saw an internist and when I saw my first neurologist, too, and they didn't want to see it and told me to put it back in my purse. So this is why I have learned to just avoid listing my symptoms, but I'm glad I can mention issues here without judgment!

I have actually wanted to go on a gluten free diet for a long time because I hear about it helps with so many health conditions. It's nearly impossible in my living situation, though, because every time I try to stock up on healthy foods, my little sister eats them all on me, and I have to go eat whatever junk is in the cabinets instead. She's bulimic, and so she eats a LOT all throughout the day and then just throws it up. However, I'm actually moving to my own apartment in 3 weeks, so I'm planning on trying to go gluten free then once I'll have my own fridge and will be 100% responsible for the types of food I bring into the home!

As for going to a neuro somewhere like California, yikes...I don't even sort of have the money for that. I don't even have a stable job at the moment, but I'm hoping I'll be able to find one once I move in a few weeks. So if I can find something that pays well enough that I can start setting aside a savings account for a trip, I will. I've definitely been told to look into doctors in places like NYC and Atlanta before but have just never had the money.