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Spent yesterday crying

Posted: Fri May 01, 2015 12:46 pm
by Sappho
I am so glad I found this board.

I very rarely cried, but I cried a great deal yesterday. You see, I had another MRI done, this time a sit-down open MRI of my brain and cervical spine, with and without contrast. I have never been able to deal with having a closed MRI, and even the normal open MRIs are panic-inducing for me. So, this one was much better.

I got the radiologist report yesterday. Like the MRI I had several years ago, the radiologist found everything to be normal.

I am at the end of my rope with all the undiagnoseable symptoms I have had, ever since January 2012. It began with floaters in my right eye, which got worse and have moved to both eyes. Other problems such as shooting pains, problems turning head (severe pain when doing so), tingling which started on my right side, and has now moved to the left side and happens every single day, weakness in my right arm that has recently gotten worse, to the point I can only hold things for a few seconds in my right hand, and a host of other neuro symptoms that come and go.

I have a long history of depression and anxiety. I've been treated with psych meds for many years. I never experienced *any* of these symptoms until Jan 2012, and they have grown steadly worse, though many of them come and go. The first doc I saw, several years ago, was a complete asshole to me. He asked me why I was bothering to see a neurologist. "Why don't you see a psychiatrist?" He said. You should have seen the look on his face when I told him the psychiatrist told me to see a neurologist! I've also seen an eye doctor, who found nothing except for dryness, and talked about my problems with another neurologist, as well as my PCP. Because of my mental health history, as well as the appt with the first neuro, I fear people not believing me, or chalking the symptoms up to "stress," which is simply not the case. Feeling like people don't believe me is worse than the actual health problems, at least at this point.

I don't even know what to do or think now. It's possible I don't have MS, and perhaps am having long term effects of the psych meds. But it also seems possible I do have MS, and they just haven't been able to see anything on the MRIs so far.

I mostly want a doctor to be able to see something so that people will take me seriously and not chalk the symptoms up to my imagination or "stress." The symptoms show zero sign of abating; so, what now? Am I just going to watch the symptoms continue to worsen, until I can't use my right hand at all? Then will people take me seriously??

I am so upset. I really don't know what to do now. I am supposed to meet with my PCP next week to go over my MRI results, but I don't even want to at this point. I'm just tired of this. So tired.

Re: Spent yesterday crying

Posted: Fri May 01, 2015 4:59 pm
by lyndacarol
Sappho wrote:I am so glad I found this board.

I very rarely cried, but I cried a great deal yesterday. You see, I had another MRI done, this time a sit-down open MRI of my brain and cervical spine, with and without contrast. I have never been able to deal with having a closed MRI, and even the normal open MRIs are panic-inducing for me. So, this one was much better.

I got the radiologist report yesterday. Like the MRI I had several years ago, the radiologist found everything to be normal.

I am at the end of my rope with all the undiagnoseable symptoms I have had, ever since January 2012. It began with floaters in my right eye, which got worse and have moved to both eyes. Other problems such as shooting pains, problems turning head (severe pain when doing so), tingling which started on my right side, and has now moved to the left side and happens every single day, weakness in my right arm that has recently gotten worse, to the point I can only hold things for a few seconds in my right hand, and a host of other neuro symptoms that come and go.

I have a long history of depression and anxiety. I've been treated with psych meds for many years. I never experienced *any* of these symptoms until Jan 2012, and they have grown steadly worse, though many of them come and go. The first doc I saw, several years ago, was a complete asshole to me. He asked me why I was bothering to see a neurologist. "Why don't you see a psychiatrist?" He said. You should have seen the look on his face when I told him the psychiatrist told me to see a neurologist! I've also seen an eye doctor, who found nothing except for dryness, and talked about my problems with another neurologist, as well as my PCP. Because of my mental health history, as well as the appt with the first neuro, I fear people not believing me, or chalking the symptoms up to "stress," which is simply not the case. Feeling like people don't believe me is worse than the actual health problems, at least at this point.

I don't even know what to do or think now. It's possible I don't have MS, and perhaps am having long term effects of the psych meds. But it also seems possible I do have MS, and they just haven't been able to see anything on the MRIs so far.

I mostly want a doctor to be able to see something so that people will take me seriously and not chalk the symptoms up to my imagination or "stress." The symptoms show zero sign of abating; so, what now? Am I just going to watch the symptoms continue to worsen, until I can't use my right hand at all? Then will people take me seriously??

I am so upset. I really don't know what to do now. I am supposed to meet with my PCP next week to go over my MRI results, but I don't even want to at this point. I'm just tired of this. So tired.
Welcome to ThisIsMS, Sappho. We are glad that you found us, too. We absolutely believe you; we take you seriously; we know that your symptoms are not a product of your imagination or stress! You know your body best.

I have no medical background, but please allow me to share my thoughts:

Your symptoms are common to many conditions. MS is just one possibility and that diagnosis can only be made after the others have been ruled out. As you said, it is possible that you don't have MS.

Numbness/tingling in the legs and arms is the textbook definition of "peripheral neuropathy." This is one of the common symptom in many conditions. The University of Chicago suggests investigating the cause of peripheral neuropathy in the following way:

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

I urge you to watch this 50-minute documentary featuring Sally Pacholok, RN, BSN, & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

Then, prepare to meet with your PCP next week: write down a list/timeline of all your symptoms (if you haven't done this already). Create your game plan with him and start to rule out the likely possible causes for your symptoms.

If he will consider a possible vitamin B12 deficiency, he may start by ordering
#1 a serum B12 test (which is considered to be outdated and inaccurate by many experts – the HoloTc test is newer and more accurate, but is not available everywhere yet),
#2 a serum folate test,
#3 a serum homocysteine (Hcy) test, and
#4 a serum (or the more accurate urinary form) methylmalonic acid test. Do NOT take vitamin B supplements before testing, as this will skew test results. (Also, ask for your own copy of any test results. It is important to have the actual result numbers.)

If your PCP does not feel comfortable with this testing, ask for a referral to a hematologist.

We are here to offer our opinions, if asked. We are here to listen; we wish you all the best – please let us know how it goes.

Re: Spent yesterday crying

Posted: Sat May 02, 2015 4:31 pm
by Sappho
Thank you for taking the time to reply. And for believing me.

I've had blood work done mutliple times, and everything looked good. Plus, I take B vitamin supplements, so I really don't think that is the issue.

Are problems with weakness and trouble holding objects in one's hand also peripheral neuropathy?

Thanks, and hope you are well.

Re: Spent yesterday crying

Posted: Sun May 03, 2015 8:54 am
by lyndacarol
Sappho wrote:Thank you for taking the time to reply. And for believing me.

I've had blood work done mutliple times, and everything looked good. Plus, I take B vitamin supplements, so I really don't think that is the issue.

Are problems with weakness and trouble holding objects in one's hand also peripheral neuropathy?

Thanks, and hope you are well.
It is my understanding that peripheral neuropathy is specifically numbness, tingling, or pain in the extremities. I think "trouble holding objects in one's hand" is probably best described as weakness, as you have described it.

Taking B vitamin supplements does not necessarily correct a B12 deficiency. If all the necessary elements (adequate dietary source, R-binders, stomach acids, Intrinsic Factor, pancreatic enzymes, correctly functioning intestines) are present to allow B12 to enter the bloodstream, it is still possible to be deficient in the specific transporter molecule required to get the B12 into the tissues (cells).

One can have enough B12 in the blood, but still have a B12 deficiency in the cells.

And if one is taking a B Complex with folic acid, folic acid can mask a B12 deficiency (This will allow neurological symptoms due to B12 deficiency to continue, to worsen, and eventually become irreversible.)

@4:50 in the video I recommended, Sally Pacholok says, "MS is a demyelinating disease and so is B12 deficiency. You can't tell the two apart unless you test for that."



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

In the University of Chicago list of blood tests recommended to investigate peripheral neuropathy, screening for B12 deficiency was the first one listed. It is estimated that 40% of the American population has a suboptimal level of B12. This seems to me a logical place to start looking for the cause of your symptoms. Any person at any age can develop a deficiency.

If a B12 deficiency is the root of your problem, it is easily and inexpensively treated; if caught early, symptoms are usually reversible. The cause of MS is unknown; in my opinion, there is no effective treatment for MS.