starting my journey

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

starting my journey

Postby momz » Thu May 04, 2017 5:41 am

I am not yet diagnosed. But I expect this is the direction my road is traveling. I apologize for the long post, and I appreciate anyone who is willing to read it and contribute their thoughts.

I started having symptoms in late January. My right foot was going numb. Well, not entirely numb. I couldn't feel temperature accurately in my foot and in random patches on my right leg.

I went to my PCP, where I was seen by a PA. She determined I could not feel sharp sensation as well. She ordered an EMG. I waited 4 weeks for the EMG, which was normal. So, the PA referred me to a neurologist.

By the time I saw the neurologist, my symptoms had dramatically improved, but not resolved. He ordered an MRI of my thoracic spine and brain with and without contrast.

This is where things got a little hairy. The MRI was read by a radiologist who is in his residency. The neurologist read the summary of the MRI which indicated I have a cyst in my spine. So he referred me to a neurosurgeon.

I saw the neurosurgeon last week. The neurosurgeon looked at the MRI of my spine and was unimpressed. He asked my symptoms, which have changed a little bit in that I then had developed a stinging sensation on my arms, kind of like a rug burn, and I still had the numb foot. He announced, "that doesn't make sense". He examined me (nominally), and determined my strength and reflexes are intact. So, he said we need to get an MRI of my brain...he didn't even realize that this had already been done. I told him that it was done at the same time as the spine MRI.

He pulled up the MRI of my brain and said that there are plaques there. He looked closer at the radiology report and discovered that the plaques were noted in the physician narrative but because it wasn't reported in the summary, it was not discovered by my neurologist. The neurosurgeon called another radiologist to confirm. He had the radiologist on speaker phone in the exam room. They were both in agreement that this is MS.

The neurosurgeon said that because this isn't a surgical issue, he would refer me back to my neurologist. He said the next step is a lumbar puncture. He told me that I would be hearing from my neurologist the next day.

But, I didn't hear from the neurologist the next day. So, 2 days later, I called the neurologist office myself and requested an appointment. Long story short, I couldn't get past the medical assistant to get an appointment. The earliest she would get me in is in mid-june. Even after explaining the situation, she would not even forward my concern to the neurologist. She said that they have a very busy office and besides, the neurologist was not in the office that day anyway. I was sobbing, she was so rude.

later, I called the neurosurgeon's office and asked the medical assistant if she could help me get an appointment with the neurologist. Needless to say, she was able to get me in to see the physician assistant tomorrow. This appointment was arranged last Friday. In the interim, I now have numbness starting in my hands, along with all the previous symptoms. I don't know if numbness is an accurate description. It 's more like a buzzing feeling and certainly dulled sensation.

I don't know what to expect. But, at this point, if it is MS I would like to prevent further damage. I feel like the longer I wait, the worse my symptoms are getting. I also worry about the medical staff not taking me seriously.
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Re: starting my journey

Postby lyndacarol » Thu May 04, 2017 9:44 am

momz wrote:I am not yet diagnosed. But I expect this is the direction my road is traveling. I apologize for the long post, and I appreciate anyone who is willing to read it and contribute their thoughts.

...........

I called the neurosurgeon's office and asked the medical assistant if she could help me get an appointment with the neurologist. Needless to say, she was able to get me in to see the physician assistant tomorrow.
Welcome to ThisIsMS, momz.

As asked, I am contributing my thoughts:

Over 1/2 of the American population is deficient in vitamin D; it is VERY common. If you have not had the vitamin D blood test called "25-hydroxy D," I suggest that you ask your PCP (or the neuro's physician assistant you will see tomorrow) for it.

Vitamin D is used by every system in the body. A vitamin D deficiency can result in any kind of symptom. In my opinion, it is a good idea to rule out this deficiency as a possible cause of your neurological symptoms.

The consensus of 48 vitamin D experts affiliated with GrassrootsHealth (http://www.GrassrootsHealth.net), the California-based nonprofit public health group, whose focus is on educating the public about vitamin D deficiency, is the recommendation that serum vitamin D should be at least 40-60 ng/mL. Many neurologists recommend a level of 70-100 ng/mL for their patients with neurological symptoms.
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Re: starting my journey

Postby Snoopy » Thu May 04, 2017 10:24 am

Hi momz,

I would suggest getting a MRI of the cervical spine and Lumbar spine before even considering a Lumbar Puncture(LP). Usually the LP is the very last test. Multiple Sclerosis is a disease of the Central Nervous System(CNS) which includes the brain, spinal cord and optic nerves, lesions can and do show up anywhere within the CNS. A Lumbar MRI is not diagnostic for MS but is for back problems which can also cause Neurological symptoms.

Waiting to see a Neurologist 2 or more months is not uncommon, if you have MS those few months isn't going to make any difference. By the time symptoms and then lesions appear the damage is already done. There is no cure for this disease and the treatments for MS make no guarantees that you won't get worse.

There is a diagnostic criteria for Multiple Sclerosis, The Revised McDonald Criteria. The criteria relies heavily on MRI evidence. Lesions are an anomaly that isn't supposed to be there but lesions can be caused by many different things. There is no single test, by it's self, which can give a diagnosis of MS. Many other conditions can cause similar symptoms as those seen in MS. For this reason the diagnostic criteria requires all other possible causes be ruled out.

I would suggest to calm down as you may or may have MS. Getting answers might take time if you don't meet the diagnostic criteria. MS is a disease that has a long history of being misdiagnosed so caution is needed on the Physicians side to make sure a person really does have MS.

He examined me (nominally), and determined my strength and reflexes are intact.


If your Neurological exam/evaluation is normal MS becomes less likely.
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Re: starting my journey

Postby momz » Thu May 04, 2017 2:24 pm

I appreciate the replies.

I have been on vitamin D supplements for a couple of years. I take 5000 IU of Vitamin D3. what is the typical recommended dose for neurologic issues?

I will learn about the McDonald criteria.

What is the difference between a lesion and a plaque? The neurosurgeon identified it as plaques, but the 2 terms may mean the same thing for all I know.

In regards to the instruction to "calm down". I am perfectly calm. I was upset for an afternoon when the medical assistant blew off my concerns. I imagine that having some anxiety and wanting see a neurologist as soon as possible is common desire for people in this circumstance.

I realize that for someone who has had this disease for a while and knows everything there is to know about it, that my situation doesn't seem like a big deal. But to me, it most certainly is. Anyway. I am calm. I'm just looking to learn about what comes next.
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Re: starting my journey

Postby momz » Thu May 04, 2017 2:31 pm

Snoopy wrote:
He examined me (nominally), and determined my strength and reflexes are intact.


If your Neurological exam/evaluation is normal MS becomes less likely.


Really? he had me squeeze his hands and he checked my patellar reflexes, that's all he did. Those things were normal. So, from that I can conclude that I don't have MS? hmmmm. If that's the case, then what are the possible differential diagnoses? I have a normal EMG and it does not appear to be a "pinched nerve". My numbness does not follow a dermatome.

Surely, a thorough neurologic exam involves more than that, doesn't it?

I feel like everywhere I turn, I'm told that my symptoms don't make sense. Like I must be crazy.
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Re: starting my journey

Postby jimmylegs » Thu May 04, 2017 3:46 pm

hi momz i developed unpleasant side effects from taking 4000 IU per day of d3 for a couple of years.

there's an array of nutritional issues shared by ms patients. there are also people who are asymptomatic, never diagnosed, and diagnostic lesions are discovered only at autopsy.

because you can do so independently and with no wait time, i would strongly encourage you to make sure your diet helps you achieve all recommended intakes of essential nutrients. because you have been taking d3 at high levels for an extended time period, i would also suggest that magnesium be the first one to evaluate.

if you at least figure out where you stand in terms of daily magnesium intakes from food, it's a start.

then you see if you're off from the recommendations and figure out which foods go into the diet to make up any deficit. you can adjust the RDA to account for individual size (can be higher or lower obvi). then you may also need to adjust the daily target upwards to account for any potential sources of depletion or imbalance eg from high activity levels, long term meds like ppis, degree of alcohol consumption, calcium supplements, vit d3 supplements, etc etc.

in your particular case if you continue the d3 supplementation i would actually suggest you consider a magnesium supplement to be taken at the same time as any supplemental d3. the recommendation i was given (by a pharmacist) was to take half the daily mag supplement with the d3, and half at another time so that the body can use the mag without it being dragged into d3 interactions. turned around all my awful symptoms in two days and then it was a long slow haul to get tissue stores back in line. now i can actually skip supplements and not feel it immediately. it was quite interesting to learn how magnesium *feels* kicking in.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: starting my journey

Postby NHE » Fri May 05, 2017 2:12 am

Hi Momz,
A diagnosis of MS is a process of exclusion. That is, all of the other conditions that can produce MS like symptoms need to be excluded via testing before an MS diagnosis can be made. One of the conditions is a vitamin B12 deficiency which can produce many neurological symptoms. Have you been tested yet for a B12 deficiency? If so, if you have the information available, what were the test results? For anyone experiencing neurological symptoms, B12 should be 500-1000 pg/mL. In addition, you may be interested in reading the following discussion topic for more information on B12.

natural-approach-f27/topic24857.html
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Re: starting my journey

Postby Snoopy » Fri May 05, 2017 6:36 am

he had me squeeze his hands and he checked my patellar reflexes, that's all he did. Those things were normal. Surely, a thorough neurologic exam involves more than that, doesn't it?


There is a little bit more to a Neurological exam but not by much. Rarely, does someone with Multiple Sclerosis have a normal Neurological exam, there is usually some deficits upon exam/evaluation. When I first started having odd symptoms that were concerning to me my PCP did a very basic exam, told me he could not help me and handed me a referral to a Neurologist. From that very first exam I have never had a normal Neurological exam/evaluation.

Many conditions can cause symptoms similar to MS as well as vitamin/mineral deficiencies, some medications, and mental health problems. Have you had blood work to check your vitamin D level and B-12 level? If not that should be done. It isn't a good idea to supplement D without knowing if you are deficient or not. Depending on the Dr. it's possible for terminology of lesions to be plaques or foci.
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Re: starting my journey

Postby momz » Fri May 05, 2017 6:49 am

My vitamin D has been tested and found to be low, that is why I take the supplement. However, I am not aware of B12 having been tested. I will ask about that at my appointment.

I have not evaluated my diet before. Where do I find information about the necessary nutrients, and how do I determine if I am getting them in my diet?
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Re: starting my journey

Postby jimmylegs » Fri May 05, 2017 8:37 am

hi public health departments post info about recommended intakes of essential nutrients.
examples

minerals
http://www.hc-sc.gc.ca/fn-an/nutrition/ ... bl-eng.php
vitamins
http://www.hc-sc.gc.ca/fn-an/nutrition/ ... bl-eng.php

there's a lot there; if you start with just the key handful that are particularly relevant to those with ms, (or just one eg magnesium) it's less intimidating. still, keep in mind these are *minimum* numbers for health *maintenance*. once you have a dx, like ms, it's possible needs may exceed those of joe average.

as for determining if you are getting these from diet, the first thing to do is a diet diary. nominally for two days at work and one at home. the idea is to create a representative picture of any given week.

where i live, the government stopped funding testing for vit d3 on the premise that everyone is low so we don't need to pay for people to find out their status is consistent with an established norm. hopefully people aren't now overdosing. or if there's a chance they are, that they have the means to pay for monitoring.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: starting my journey

Postby lyndacarol » Fri May 05, 2017 9:11 am

momz wrote:I have been on vitamin D supplements for a couple of years. I take 5000 IU of Vitamin D3. what is the typical recommended dose for neurologic issues?

...............

I realize that for someone who has had this disease for a while and knows everything there is to know about it, that my situation doesn't seem like a big deal. But to me, it most certainly is. Anyway. I am calm. I'm just looking to learn about what comes next.
First of all, most of us have had at least one doctor try to convince us that we were crazy. We understand that your symptoms are real.

Concerning vitamin D… Was your vitamin D test done recently? Do you have, or can you get, the actual test result numbers? "Low" is not specific, you must have the actual number.

Everyone absorbs and makes vitamin D at different rates. There is no standard dose for everyone. At the same dosage, one person can have a vitamin D blood level of 20 ng/mL; while another person (on the very same dose) can have 120 ng/mL in his blood.

Once you know your actual number, you and your doctor can consider your treatment plan to raise your level; this should be discussed with him. You may find the following charts helpful in picking your starting dose:

Charts showing intake level necessary for change in serum level:
http://grassrootshealth.net/media/image ... single.pdf

After taking vitamin D supplements for about 6 months, your vitamin D level must be tested again to monitor whether your level has increased at all and, if so, how much has it increased.


And by the way, not one of us "knows everything there is to know about MS." We are all searching for the answer.
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Re: starting my journey

Postby NHE » Fri May 05, 2017 9:11 pm

momz wrote:Surely, a thorough neurologic exam involves more than that, doesn't it?


A Romberg test is pretty common.
http://www.physio-pedia.com/Romberg_Test

In addition, a check for Signs of Babinski is also common.
http://www.physio-pedia.com/Plantar_Response
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Re: starting my journey

Postby NHE » Sun May 07, 2017 1:34 am

NHE wrote:
momz wrote:Surely, a thorough neurologic exam involves more than that, doesn't it?


A Romberg test is pretty common.
http://www.physio-pedia.com/Romberg_Test

In addition, a check for Signs of Babinski is also common.
http://www.physio-pedia.com/Plantar_Response

I would also expect a test of the vibratory sensation via a tuning fork on the legs and arms to help rule out possible subacute combined degeneration damage to the spinal cord from a B12 deficiency.
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Re: starting my journey

Postby lyndacarol » Wed May 10, 2017 5:24 pm

momz wrote:Surely, a thorough neurologic exam involves more than that, doesn't it?
Your original post began by describing your "right foot going numb." Numbness/tingling in the extremities (feet/toes or hand/fingers) is the description of peripheral neuropathy.

You may be interested in the University of Chicago's description of a neurological exam:

http://peripheralneuropathycenter.uchic ... ndex.shtml
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Re: starting my journey

Postby momz » Mon May 15, 2017 5:04 am

Tomorrow is the next step on my journey to figuring this out. I am having a lumbar puncture. I have been told to have someone else drive me, to arrive well hydrated, expect to lie flat for an hour afterwards and then to take it easy the rest of the day. What else can you tell me about this procedure? What can I expect if all goes well, what complications could happen?

The rest of my post is just a vent. Read on if you like, but don't feel obligated.

I saw a physician assistant last week. I was frustrated with the visit at first, but have finally resolved that there is nothing I can do to speed this thing along.

The PA was not prepared for my visit. She read the initial radiologist report of the MRI but did not read the neurosurgeons or the second radiologist note concerning his findings. There was a significant discrepancy in the readings. The initial reading was completed by a resident who mentioned the presence of non-specific white matter within the narrative, but did not mention this finding in the summary. Later, the neurosurgeon viewed the MRI and saw several plaques, he then consulted a board certified radiologist who confirmed this. Both the neurosurgeon and the second radiologist said this is suggestive of MS.

However...the PA had not read these reports. She also had not viewed the MRI images herself. She came into the room and immediately stared lecturing me on the initial summary report and telling me that there is nothing here to be alarmed about. So, I asked her to explain why the neurosurgeon and the second radiologist would have said that the images suggested possible MS. Well, this is when she admitted that she had not seen these reports and had not viewed the images herself.

UGH!!! I am so frustrated with this process. But, in the end, she heard my concerns, and she read over the notes (still didn't view the images, but whatever) and ordered a lumbar puncture.
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