Please help me with all this!

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Please help me with all this!

Postby Mislpn » Sun May 07, 2017 11:03 am

Hello, I really am lost with no answers and I don't know what to think or do. I am 44 yo who had a brain MRI in 2015 that showed one defined area deep in white matter, as per my neurologist. I had that MRI due to confusion, dysphagia, legs felt like they aren't working, unsteady gait, can't think clearly, depression, and heat intolerance, also when I speak I am unable to find or say the word I know in my mind that I want to say, double vision episodes. My family doctor said oh wow you are too young for dementia. I had been telling him how the symptoms were progressively getting worse and seemed bad when I was stressed and really depressed. I am an LPN that has seen many things over a 16 year career in long term care and in my heart I knew I have MS. I kept pushing myself to just work and as long as I am continue the 12-16 hour shifts then in my mind I was ok. I kept hiding my symptoms from family coworkers and hell even myself. It got to be too much when my speech and talking had episodes so bad that it was obvious to people that something was going on with me. I had a really bad episode of depression and ended up in bed crying for days and went to work crying and panic attacks, my chronic back and bilateral leg pain was at its worst. I requested an immediate resignation as I had a complete breakdown and felt I needed to get help asap. I started antidepressant and told my family doctor I was ready now to face it all and stop trying to hide my symptoms and stop trying to be the hero and be the one in my family's that took care of everyone else, so I went to neurologist and had a second MRI in 3/2017 that still showed that area previously noted in 2015. My symptoms have periods of being almost nonexistent and manageable to severe and feel like the world is caving in on me and I can't walk or talk or swallow or think. Oh forgot to mention I was hospitalized last year in April 2016 for seven days for a pulmonary embolism. Which doctors have no clue how I got the PE. I currently am no longer on Coumadin, docs feel it should be resolved. Right before that PE, I had told family doctor about my symptoms again being severe and he said wow I can't believe someone your age could have had a stroke. Ok now with second abnormal brain MRI and history of PE and symptoms creating havoc in my life, my neurologist wanted to do a spinal tap. It was done in 4/2017 in the radiology department on an X-ray table. I was told to lay flat for approx 15 mins and told to go home and rest. No viral signs taken. I even drove home. Now I have results from spinal showing more than 5 bands. Everything else with the csf showing normal. I need up in ER two days after spinal tap with excruciating head pain that I was close to passing out when I would stand up from a laying position. I was admitted to hospital to have a blood patch done. Had that done by an anesthesiologist and not my neurologist whom never stopped in to see me while I was in hospital and his office was one floor above my hospital room. After blood patch I immediately had severe pain done both legs and buttocks. Nurses and doctors said hmm that's strange. The anesthesiologist that did my blood patch stated that it could have been from my sciatic mere being knicked during the spinal tap my neurologist had done. Funny because that sciatic pain didn't start until immediately after the blood patch procedure and miraculously the head pain from the tap was gone. But the leg and buttock nerve pain wasn't even an issue after my spinal tap. Neurologist said all results good for spinal tap from csf fluid. I asked about the bands noted in my csf results because I was able to pull up my results from the patient portal. He stated yes it shows more than 5. No other explanation. So he suggested brain MRI every six months. He stated he is not willing to diagnose me with MS with one area noted on brain MRI and that number of bands, he said oh yeah Im sure MS specialists may diagnose with those results and want to be quick to start medication, but he said he's not wanting to do that unless I start having any new or more symptoms or one more area would be seen on my next brain MRI. He said once I start medication and treatment for MS, if it would be something else, that you just cant stop the treatment once it's started. I don't understand that at all. So as I am looking over my spinal tap results and yes more than 5 bands noted in csf but lab unable to compare to blood serum sample as one was not sent with the csf fluid. Please help me understand all this, should my blood have been sent? Would I have to have another spinal tap done to have csf and blood tested at same time? Is one area in white matter shown on brain MRI result and more than 5 bands showing on csf result along with all the symptoms I have enough to diagnose me with MS? Should I get a second opinion? I am depressed and broken and dealing with all this alongside a man that I gave my love to for 12 years and now he treats me as an inconvenience to him and like I'm overreacting. I literally don't know which way to turn as it hurt s to clearly see that he does not care about my health. Please help me
Last edited by Mislpn on Tue Jun 06, 2017 10:52 am, edited 2 times in total.
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Re: Please help me with all this!

Postby jimmylegs » Sun May 07, 2017 12:17 pm

hi melissa sorry to hear you're having a rough time.
while you're dealing with docs and waiting perhaps you can ask for referral to a dietitian. aiming for optimal health while you wait for diagnostics to unfold will only do you good. here's a set of posts that shows a real fast forward through the kind of process i'm thinking could only help you out. introductions-f20/topic28969.html
even if all it provides is a sense of control, taking action, doing something positive, it will help you at least feel better emotionally amidst all the rest of waiting and questions regarding the rest :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Please help me with all this!

Postby lyndacarol » Sun May 07, 2017 1:40 pm

Welcome to ThisIsMS, Melissa (Mislpn).

There are no symptoms that are unique to MS, there is no test that is specific to MS either. MS is a diagnosis of exclusion. It can only be considered after all the more likely causes for your symptoms have been ruled out.

For instance, lesions, pulmonary embolisms (PEs), oligoclonal bands can be due to vitamin B12 deficiency. Did your family doctor order blood tests for nutrients? Many nutrient deficiencies can lead to symptoms such as yours.

If you have not had the vitamin D blood test called "25-hydroxy D," ask your family doctor to order one for you. It is inexpensive; and you can certainly handle a blood test after all the other testing you have been through!

Do some research on vitamin D deficiency and you will find that it can lead to everything you list – scientists are even linking it to dementia and Alzheimer's today.

Ask for other tests for your magnesium level, your zinc level – these are cofactors involved in the pathway of vitamin D. My suggestion is that you start with nutrient testing. Let us know your test results (the actual numbers!), if you are willing to share them.
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Re: Please help me with all this!

Postby NHE » Sun May 07, 2017 9:50 pm

Mislpn wrote: ...my neurologist wanted to do a spinal tap. It was done in 4/2017 in the radiology department on an X-ray table. I was told to lay flat for approx 15 mins and told to go home and rest. No viral signs taken. I even drove home. Now I have results from spinal showing more than 5 bands. Everything else with the csf showing normal. I need up in ER two days after spinal tap with excruciating head pain that I was close to passing out when I would stand up from a laying position. I was admitted to hospital to have a blood patch done. Had that done by an anesthesiologist and not my neurologist whom never stopped in to see me while I was in hospital and his office was one floor above my hospital room. After blood patch I immediately had severe pain done both legs and buttocks. Nurses and doctors said hmm that's strange. The anesthesiologist that did my blood patch stated that it could have been from my sciatic mere being kicked during the spinal tap my neurologist had done. Funny because that sciatic pain didn't start until immediately after the blood patch procedure and miraculously the head pain from the tap was gone. But the leg and buttock nerve pain wasn't even an issue after my spinal tap.

Hi Melissa,
Welcome to ThisIsMS. When I was diagnosed, I also developed a headache after the spinal tap. I was told to lie down afterwards, but didn't. I suspect that the 15 minutes you lied down was not sufficient. People may need more like 30-60 minutes. In any case, after a week of struggling with the spinal tap headache, which was excruciating, I also had a blood patch done. However, I did not experience any pain afterwards, just relief from the headache. In your case, I suspect that a nerve may have been nicked when the blood patch was done. Or, perhaps the blood clotted in an unusual way and put pressure on a nerve. An MRI of your lumber spine where the patch was done may reveal what's going on. If the sciatic pain doesn't resolve, then go back to the doctor and complain though I really don't know what they could do.

Mislpn wrote:Is one area in white matter shown on brain MRI result and more than 5 bands showing on csf result along with all the symptoms I have enough to diagnose me with MS?

It sounds like your in a position of just having one attack and have the result of being diagnosed as probable MS or what's called Clinically Isolated Syndrome (CIS). The diagnostic criteria for MS is called the Revised McDonald Criteria. See... http://www.nationalmssociety.org/For-Pr ... g-Criteria which states "Diagnosis of MS requires elimination of more likely diagnoses and demonstration of dissemination of lesions in space and time."
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