Multiple Sclerosis can take time to diagnose
The good, the bad, and the ugly
I have seen a few questions here and there about getting a diagnosis of Multiple Sclerosis and what it entails. So first off, let’s get a huge myth out of the way. Unlike most conditions, there is no test to diagnose Multiple Sclerosis (MS). There are no antibodies created and no markers in the blood or anywhere else.
As it was explained to me by my first neurologist, MS is diagnosed by ruling out every other possible cause of the symptoms the patient is experiencing. My diagnosis, which you may sometimes see as “DX” or “dx” took me two years. This was back in 2005 and that was considered short at that time. We are getting better now and the time frames are getting shorter for the most part.
This can take so long because there are many diseases that may look like MS at first glance, or MS may look like them at first glance whichever way you prefer to look at it. Some of the diseases the mimic MS are:
Systemic Lupus Erythematosus (SLE)
SLE is a disease of the immune system, just like MS. That means your immune system malfunctions and attacks healthy parts of your body. SLE can cause many symptoms that mimic MS. In fact, SLE is called “the great imitator” because it can mimic so many conditions. Possible symptoms include numbness, tingling and fatigue.
Sarcoidosis is an immune system disease that usually occurs during young adulthood. It often affects the lungs and the skin, but it can also affect the brain. Sarcoidosis can cause fatigue and symptoms that mimic MS. Optic Neuritis (ON) is one symptom of MS, in fact that is the first symptom many times, and Sarcoidosis can cause visual disturbances that can be confused for ON, and Sarcoidosis typically appears between ages 20 and 40, which just happens to be the age range that MS is most commonly diagnosed at.
Myasthenia gravis causes slowing of nerve signals to muscles. Symptoms can be similar to MS and include weakness, fatigue, and heat intolerance. Like MS, myasthenia gravis occurs often in young women. It may cause visual disturbances and trouble swallowing. It is also an immune system disease. Many doctors do not easily recognize clinical findings as myasthenia gravis, it can often result in a missed or delayed diagnosis.
The bacterium that causes Lyme disease , Borrelia burgdorferi, is spread through the bite of infected ticks. In the northeastern, mid-Atlantic, and north-central United States, the black-legged tick (or deer tick, Ixodes scapularis) spreads the disease . The western black-legged tick (Ixodes pacificus) spreads the disease on the Pacific Coast. The bacterium that causes Lyme disease can bring on many symptoms that mimic MS. These include numbness, tingling, and fatigue among others. You might suspect Lyme disease if you live near or spend time in woods or fields where deer are common. Blood testing can confirm exposure to the Lyme organism. However infection with other diseases, including some tickborne diseases, or some viral, bacterial, or autoimmune diseases, can result in false positive test results for Lyme disease.
Vitamin B12 Deficiency
Demyelination, which is what is spotted on an MRI used to detect MS, can be caused by a vitamin B12 deficiency. Since demyelination also occurs in MS, symptoms can be very similar. They include numbness, tingling, or weakness in the legs and arms or mental confusion may also occur. You can get B12 only through foods such as meat and dairy products. Vegetarians are most likely to be low on B12. People who frequently use antacids or acid reflux medications are also at risk.
These are just some of the diseases that can be confused with MS.
Other reasons for a delayed diagnosis
Another factor that may delay MS can be found right in the name, multiple. While Optic Neuritis is one of the more common ways that MS presents itself, it is not the only way. And just because someone has ON that does not automatically mean that they have MS. There can be many causes for ON including an injury obtained sometime earlier in life just rearing its ugly head. In this case, the ON will most likely never appear again. But, if a neurologist suspects MS after running other tests, ON alone is not enough to give a diagnosis of MS. That is because there must be more than one thing pointing to MS as a diagnosis, hence the name Multiple Sclerosis. However, if the neurologist feels that you may actually have MS but he only has one thing to point to, ON for example, then you may be given a diagnosis of Clinically Isolated Syndrome (CIS). Many times patients will receive this diagnosis if they have not yet had an MRI. If there is evidence of MS in the form of lesions on the brain then this is considered to be the second part of the puzzle and a diagnosis of MS will be warranted. Just as a side note, if you have ON, then you will be able to see that on the MRI also. If you are so inclined, tell them when you first arrive at the testing facility that is doing the MRI. After having you sign a release form, then most places will give you one free of charge. You can take this home and look at it on your computer and see what your neurologist sees. Both optic nerves will be visible on MRI pictures so if you have ON in only one eye, you can look at the nerve for that eye and compare it to the other. I know on my MRI there was a very visible difference in the two optic nerves and you did not have to be a radiologist to see the damaged nerve.
Moving on, now days when the doctor wants you to go get blood taken for testing, he simply sends the order over the computer to the testing laboratory. In the early 2000s when I was starting on this journey, he would give you a paper that had all of the tests he wanted checked off. The first paper I received looked like it had more boxes checked than not. And this paper looked like it had at least 100 tests on it. I still remember that they pulled 16 tubes of blood out of me that day, and yes, I counted. I joke with the phlebotomist that she should have just taken a pint and made it easier.
But, all of these blood tests were to rule out other possible causes of the ON that I was experiencing. And that goes back to what I said earlier. Since there is no definitive test for MS you rule out everything else that can be causing the patient’s symptoms.
There are tests other than blood tests that some neurologists will use. A big one that gets used is the Lumbar Puncture (LP) or spinal tap as a lot of people refer to it. I will add a personal note here so hopefully I can prevent someone from going through what I went through. If you have an LP done, make sure to lie flat on your back for 24 hours. The doctor I had neglected to tell me this and I wound up with the worst headache I have ever had, and I have had migraines. But while you are flat on your back make sure to have lots of fluids that include caffeine. It doesn’t matter if it is coffee, tea, soda or whatever. This will help your body replenish your CSF quicker And they took approximately a cup of CSF from me. I have been told that being this low on CSF is what caused the headache. So please, keep this in mind if you ever have to get this test.
Anyway, the LP is a test to check the Cerebrospinal fluid (CSF) for something referred to as O-Bands, An oligoclonal band is a protein called an immunoglobulin. The CSF oligoclonal band screen looks for these bands in your CSF. Their presence suggests inflammation of the central nervous system due to infection or another disease. If similar bands aren’t present in your blood, you may have multiple sclerosis (MS).
But even testing the CSF for the o-bands is not a definitive test for MS. This is coupled with the MRI and all of the other tests that the doctor runs to come to the conclusion that a diagnosis of Multiple Sclerosis is warranted.
And that is when the journey really begins. Each person handles it differently, and that is fine. We are all individual people.
Until next time, stay safe and pain free!