Doc and I know it's MS, for years, help with the latest MRI

[MissTLC]

I am only going to post basic info here.
I just had an MRI yesterday and will include the first report and the basic MRI yesterday. I've noticed doctors tend to minimize everything and forget the symptoms diminish my quality of life. My vision is 'snowy', is stacked, brighter in one eye, at night there's very little difference in sight when I close my eyes, versus them open. I can barely see. I have distinct almost scratches inside my left eye mainly I discovered when I was looking through a microscope. I get these massively bright zig zag images that start on one side and move across to the other, getting smaller during the process. My lumbar puncture showed no signs but destroyed what was left of my back. I have spondylosithesis and spondylosis since childhood ( 30 plus years ).
In 2010 I couldn't walk, could barely see and that's when it all started. I have a titanium cage in place of C3-C5, and will need the others replaced as well. I went to the emergency room 2 months ago, after it felt like my entire body was disconnecting - like every joint and bone was separating. They did no tests I take NUVIGIL 3 times a day, Ritalin 20mg 4 times but still can't remember or focus and will fall asleep if seated for over 20 minutes.
I'm discouraged with the latest results as in 2010 my local jerk MS expert pulled out a flash card and said " YOU HAVE 5 of 7 SIGNS". YOU DO NOT HAVE MS. I left in tears. I was dx with "nerve damage ", optic neuritis, blah blah. But. What will make the rest of my life better? I know I'm wheelchair bound as I'm losing so many functions but no one will find or treat me.
Please look at what I've got posted. I had other info but my uninsured house house burned down and I lost everything. I'm on SSI and fighting for my girls in court because my ex lied and I don't have $ to fight him. If only dreams really would come true. I've reached out for help, but am invisible and think who is going to care enough about me to find the cause, or treat my symptoms and let me start again.
My life is more dramatic than a movie, and all I've ever wanted was a home before I lose my mobility.
I am not on the computer too often , it hurts my eyes.
Thanks in advance !!!


Impression
IMPRESSION:
No acute intracranial abnormality. No acute/subacute ischemia or mass effect. Punctate nonspecific white matter focus in the posterior right corona radiata, unchanged. No progressive white matter disease.

HISTORY:
headaches, vision change, paresthesias, diplopia, ataxia, R51 Headache ABF

TECHNIQUE:
MRI of the brain was performed without intravenous gadolinium contrast using a demyelinating brain protocol at 1.5T.

COMPARISON:
Brain MRI 11/2/2010.

FINDINGS:
No mass effect or midline shift is seen. Punctate focus of T2 prolongation/hyperintense FLAIR signal in the posterior right corona radiata is unchanged. Gray-white differentiation is unremarkable. No restricted diffusion or parenchymal susceptibility is
seen. The ventricles are normal in caliber and configuration. No extra-axial fluid collections are seen.

Expected flow voids are seen in the major intracranial vessels. The included sinuses are clear.

Component Results
There is no component infourmation for this result.

My MRI from 2010 had 2 lesions, again 5 of 7 signs and dozens of symptoms of MS, including demyelination disease that was specifically identified. My symptoms of slurred speech and the inability to be stable on my feet have had people accuse me of being intoxicated when I wasn't and I am desperately seeking some form of help and assistance in getting the proper position to start treatment on whatever it is that I have. I also have a Tornwaldt's cyst in the nasopharynx that at this point seems to be no clinical significance however when I can't walk at times there's got to be an answer that the right person hasn't been reached yet. And knowing each day I'm losing some mobility, vision, control as the jerks are beyond annoying, but my youngest daughter is 9 and my ex keeping me in court with 70 motions now, and losing my home and my property , along with the down payment on my new home that was as modest ( a pre fab kit from Eloghomes who were going to help donate to help me build) but now the fight of my life is more so in being a mom and my children's rights since I can not get any proper dx, any one with the ability to help someone with limited time have independence and a home before it's too late.
Any ideas on what to do with finding treatment is greatly appreciated. I mentioned my personal life because it has a huge impact on our struggle with our diseases and pray one day my dreams come true and my miracle happens.
God bless you all !! d

[Scott1]

Hi,

I don't know if this is MS or not and I don't think it matters. The spondylosis is bad enough.
What infections have you been tested for? It seems inconceivable that you haven't had a few. e.g. mycoplasma, ricketsia, lyme, EBV, bartonella, etc
Have you had any antibody tests such as NMDA antibodies? What gene tests have you had?
I think you need to change doctors.

Regards,

[lyndacarol]

Welcome to ThisIsMS, MissTLC.

You are not "invisible" to us. You have found a community that does care about you; we do not have the answer, but we are willing to share suggestions – each of us is unique, with our unique ideas.

You say that no tests were done in 2010… If you have never had a vitamin D blood test (the "25-hydroxy D" test), I urge you to call your GP and request one. Ask for your own copy of the test results – it is important to have the actual test result numbers.

Neurological symptoms may result from vitamin D deficiency/insufficiency. Start with this simple test and measure your vitamin D level – let us know how it goes, I am especially interested in vitamin D (In January, I was tested and my result was low, 24 ng/mL)

There is not necessarily ONE cause for ALL your symptoms. Please ask for the vitamin D test (ANY doctor can order it for you). Experts have estimated that 70-95% of Americans are deficient in vitamin D – you could be one person in that group.

[ElliotB]

MRIs have limited usefulness as you can have symptoms without lesions and have be symptom free with lesions. Lesions can also come and go over a short period of time so two MRIs taken within a small time period can have varying results.

This link shows a time lapse video of lesions coming and going over a 12 month period and is quite revealing:

http://www.msdiscovery.org/news/news_sy ... -meets-eye

After seeing this, I decided not to have any more MRIs.


Through diet, exercise and lifestyle change, it may be possible to make your own miracle!

Comprehensive blood work can reveal much about your health and I strongly recommend it. There are many indicators in addition to vitamin D that can give you guidance as to what you need to do to improve your overall health.


There are potential solutions to all the issues your bring up but it is up to you to find/discover them and make them a reality. I live my life by the philosophy "If it is meant to be it is up to me".

[MissTLC]

I made a typo, I meant to say I had all my first tests in 2010. My vitamin D level is 13. I have an rx I take once a week. I the newest MRI didn't show much change from the last one, and it leaves me with still nothing definitive.
I've been on the vitamin D for almost 2 months and nothing has changed. Looking at what you consider low, at a level of 24, mine being 13 is insanely low !!
Since this MRI didn't reveal much, and having the comprehensive cbc showing pretty much my platlet count is low, both red and white blood cells are low, and knowing my symptoms aren't going away, I guess I'll have to request other blood tests.

My question is still what can be done to make the symptoms go away? I can have a bazillion tests, but do each diagnosis have a distinct difference in treatments?

I just want the best quality of life with the minimal amount of medications since there are so many side affects that outweigh the benefit and maybe I will just have to 'suck it up ' and live this way. I don't want to be poked and prodded just to end up doing this for years and what ever it is is never found. Needles hurt. I don't want to waste my time when in my heart I know what I feel and I have to live it, not the doctors. That's what bothers me most. When a doctor doesn't listen to me, I mean actual hear what I say and just go by the book. Sometimes the answer is outside the box but their pride prevents them from being normal.

I've heard " do you get enough sleep " and " have you been depressed " - that's my que to walk away because they've closed their ears and won't admit they don't know and don't want to help me figure out what's going on. I would respect them more if they would just be honest if they didn't know, rather than blowing me off as if it's ' ALL IN MY HEAD"...

[lyndacarol]

You are correct: "being 13 is insanely low!!" I urge you to consult your doctor about raising it as quickly as possible.

According to the California-based GrassrootsHealth organization (http://grassrootshealth.net/media/image ... single.pdf), they recommend a vitamin D level between 40-60 ng/mL; they estimate supplementation of 10,000 IU/day would be necessary to raise your level eventually to 60 ng/mL. To raise your level as quickly as possible may require an even larger dose. I doubt that dosing once a week will do it.

There is lots of good, general information on vitamin D on their website, www.GrassrootsHealth.net

There are neurologists who advise patients with neurological symptoms (such as yours) to reach and maintain a level between 80-100. If your doctor does not feel comfortable dealing with your situation, ask to be referred to a specialist (an endocrinologist or even a hematologist since your red and white blood cells are low – by the way, your deficient vitamin D is probably responsible for your low blood count, in my opinion – I have no medical background). You will need to repeat vitamin D blood tests every 3-5 months to confirm your levels are improving.

Studies have shown a connection between vitamin D deficiency and ankylosing spondylitis. It is entirely possible that you have been deficient for 30 years.

"Vitamin D deficiency in patients with SpA is prevalent, may be related to disease activity" August 20, 2015 Ankylosing Spondylitis
http://www.healio.com/rheumatology/spon ... e-activity

Certainly, if you have been vitamin D deficient for a long time, it will take much longer than 2 months to replenish the "tank" and heal the affected systems in the body. (Vitamin D is used in almost every cell, organ, system in the body. It is necessary for making our DNA.)

I definitely do not think that you have "to 'suck it up' and live this way." I encourage you to read through the Coimbra High-Dose Vitamin D Protocol sub forum (http://www.thisisms.com/forum/coimbra-h ... tocol-f57/) for some inspiring stories of people taking high-dose vitamin D. It may take a while, but I am optimistic that things will improve for you. (By the way, it might be worthwhile to have your children's levels measured, too. It is estimated that 70% to 95% of the American population is deficient.)

[ElliotB]

My question is still what can be done to make the symptoms go away?

This is everyone's question to which there is no simple answer. Perhaps the best answer and not the one you want to hear but the most factual is that in time the symptoms should wain (for RRMS).


since there are so many side affects that outweigh the benefit


Actually all the medications typically have some limited side effects but typically not so many that they are not worth taking. Taking one is a personal choice.


Needles hurt

I am on Copaxone and take a daily injections (for almost 3 years now) and do not experience any pain.


I know what I feel and I have to live it

As mentioned in my previous post, there are many options that can possibly help you feel better. But at this time, there is no magic pill.


I've heard " do you get enough sleep " and " have you been depressed " ...

Actually their concerns are legitimate. The importance of sufficient sleep, especially for those of us with MS, should not be underestimated. And depression is common among those with MS can can contribute to symptoms and relapses and it is important not to become depressed.