So, not really sure and waiting for the "what next..."

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So, not really sure and waiting for the "what next..."

Postby tfw2017 » Mon Dec 25, 2017 6:39 pm

This is a long story, I apologize in advance!

My back has been hurting for a while. I went to my primary care doctor and she ordered X-rays and an MRI on my lower back. Nothing really jumped out at her, so she referred me to a neurologist/neurosurgeon. I had my appointment last Monday. I loved the doctor! He talked to me for a while and we discussed my symptoms. My legs, particularly my left, have really been hurting. Lots of weakness, pins and needles sensations, numbness, and aching. I told both doctors that my legs will hurt so bad, like I've run five miles or worked out really hard and they are sore. I've fallen lots in the past two years. I've had more migraines with auras in the past year than before my hysterectomy. Lots of other weird things, like not being able to think of words or what I want to say. I am so, so tired too. .

Anyway, he went out to look at my MRI and when he came back he said my back actually looked really good! I was shocked because I have been hurting really, really bad. I've been unable to move or bend and very weak. Doctor said well let's check your reflexes! He started with my right knee first. When he hit it, my leg jumped so high that I kicked him! I was like woah! I laughed and he did it again and I tried to keep it down but he said not to fight it. He moved to my left leg and hit that. It barely jumped. He moved through the rest of my limbs. My husband said that even he could tell my left side was weaker. He then used a pin on certain areas. I could tell he was poking me,but it didn't hurt. When he poked my stomach in the left side, he asked if I felt that. I knew he poked me, but I didn't really feel it. I said yeah very hesitatingly. He said that doesn't sound sure, do you feel it? I told him not really. I could tell that he was poking me but it didn't hurt. He went back through and did it all again and told me to tell exactly how it felt.

Well, afterwards he said hmmm, something is definitely off. Let me go talk with one of my partners (it's a big clinic with a physical medicine clinic, too). He came back in about 20 minutes later and told me that he was sending me downstairs for more X-rays, another MRI on my thoracic area, and he wanted me to go for a nerve conduction and emg test at 5 with another doctor.

During the tests, the doctor asked me a lot of questions. We talked about my falling, leg pain, back pain, rashes, how it felt when I was falling, and lots and lots of other things. It was very thorough. Afterwards, he said that he was going to finish the report and send it over that evening.

The next morning, his nurse calls me and tells me that I passed the two tests. I was happy! Then I discover that it's actually not a good thing at all. All it means is I don't have peripheral nerve damage- like from a bad back or diabetes. Further, asymmetrical reflexes are indicative of disease. So, I'm waiting until my doctors return from their Christmas holidays. I have no idea what will happen next or what kind of tests they will want to conduct.

I feel tired all the time. I've had problems with my ears ringing and my eyes being blurry. I recently got glasses and the eye doctor said my eyes aren't able to quickly adjust to things being close or far away. Also, when I was in my early 20s, I had a very serious health episode. One morning I woke up with what could only be described as a rash on my knees and the joints hurt. You could say it spread to the rest of my joints. I hurt so much. I dropped out of college for the semester and was essentially bedridden. I could not bend my joints and was in extreme pain. The only thing they could decide it could be was rheumatic fever. I really had not tests done so it was just me educated guess by a small town doctor. Afterwards, it seemed like I had to relearn even the basic things like adding.

I said this was a long post! So anyway, I don't really know what could be going on. I have felt like something was wrong with me for a long time, but never could put a finger on it. Since my doctor's appointment and getting the test results, I have been researching. I don't believe in self-diagnosis, but it really seems like I could have MS. Any thoughts or advice?
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Re: So, not really sure and waiting for the "what next..."

Postby Scott1 » Mon Dec 25, 2017 10:12 pm

Hi,

I honestly don't know what the problem might be. To more definitely exclude demylination related to MS they should MRI both the brain and the top of the spine (up into the neck) The thoracic is a bit lower down.

The back pain could be related to the muscle most closely connected to the spine near the bottom of it called the multifidus. You don't have to have a disease for it to decide to switch off. It is the muscle the really determines how straight you stand. People with a stoop usually have the multifidus switched off and that places abnormal strain throughout the back and pulls your hips out of neutral stressing a whole lot of leg and back muscles. Whether further investigation shows something or nothing at all its worth waking the multifidus up by exercises that a physio or pilates instructor can show you. Additionally a good masseur can objectively tell where you are tight and manipulate the fascia to provide some relief.

I suspect you have an underlying issue but it can help to pay attention to things you can control.

Regards,
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Re: So, not really sure and waiting for the "what next..."

Postby tfw2017 » Tue Dec 26, 2017 4:27 am

I will be having more tests done, just waiting until the doctor's return. I'm aware of the three areas of the spine- cervical, thoracic, and lumbar. The dr was ruling out a problem in the thoracic area. The nerve conduction test and EMG was after the MRI. There was no way to tell prior to those tests that my damage was not in thr PNS, but in the central nervous system. Since having these tests and speaking more to the doctors, I have learned that the nerve test and EMG is the first step in diagnosing a progressive CNS disease. Also, the asymmetrical reflexes and hyper flexing with jumping that occurred during the first doctor's exam and during the second doctor's exam in the middle of the nerve and EMG tests is highly abnormal.

I was advised by the neuro office that I would be having more tests done. I was just very curious as to what normally comes next.
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Re: So, not really sure and waiting for the "what next..."

Postby Scott1 » Tue Dec 26, 2017 12:44 pm

Hi,

In terms of tests, probably not much. They will, most likely, only do a few more scans. The episode in your 20s becomes relevant. Infections can lay dormant so they should do some blood tests looking for any signs. If they don't find anything on the scans then blood tests are the next logical thing. If they find something on a scan then they will only do blood tests for baseline readings of key measures. Normal MS diagnosis is dismissive of infection so you may have to push to get them to look. Depending on where you live in the world the rash you had can be meaningful.

The eyes can be an age thing. When they start to really shift focus it can be rapid and bothersome. The reflex tests are the ones that are meaningful but not definitive.

Regards,
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Re: So, not really sure and waiting for the "what next..."

Postby tfw2017 » Tue Dec 26, 2017 12:50 pm

Thanks for your reply! The neuro office mentioned a lumbar puncture. Is this a common test for ruling out or confirming? My husband and I are in limbo and we have decided to try (haha) to not worry about anything until we have something to worry about.

Strangely enough, my back pain has tapered off a whole lot.
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Re: So, not really sure and waiting for the "what next..."

Postby Scott1 » Tue Dec 26, 2017 1:10 pm

Hi.

A lumbar puncture is an old way of diagnosing. They would look for bands in the fluid as a marker. Usually MRI's are a useful enough guide but, again, it seems to depend when in the world you are.

Not worrying is a good idea. The list of things that can produce the symptoms you have described is nearly endless and often don't correlate with each other. No matter what the result just focus on sensible things, which is what you are doing now.

Regards,
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