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Recently began process to be evaluated for MS Diagnosis

Hello, I am new here and thought I would post my story and hopefully get insight from others who have gone though this. I am a 34 year old otherwise healthy male in the US. These past 5 months or so have been very stressful and I am trying to get to the bottom of the neurological symptoms I am experiencing. This is going to be a bit long-winded, and probably more information than I need to include but I felt was important to get all the details.

This all seemed to start for me back in the middle of December, 2018. While working on cutting up raw meat (venison) I accidently cut my left middle finger. I cleaned up the cut, applied isoprophyl alcohol and neosporin and wrapped a bandaid around it and didnt think too much more of it.

Within 3-4 days of this I started experiencing numbness in my left Pinky and Ring fingers (which is part of the Ulnar nerve, not the Median nerve that is in the middle finger). I was worried somehow my cut affected the nerves, even though the finger I cut and where I was experiencing the numbness were part of different nerves. Shortly after, I visited my PCP and he prescribed an 10 day antibiotic. I took the entire course of the antibiotic but still had some numbness occuring.

After having the numbness for probably 2-3 weeks, I noticed that the numbness started going away, however I had what felt like a pinched/compressed nerve at my funny bone. This lasted for probably 1-2 weeks.

Then the compression I felt in the funny bone seemed to move up into my Left shoulder/upper arm area. It was a dull/achy type pain and this ended up occuring for almost 4 months.

Over the course of the 4 months I was having the dull/achy shoulder pain I visited my PCP on a few occasions, in which several blood tests were ordered, an X-Ray of me left shoulder was performed, and an EMG/Nerve Conduction Study was performed. The X-Ray and Nerve conduction study came bakc completely normal. The Blood tests included, CBC, Double stranded DNA, ANA, Lyme, BARTONELLA PCR, C-REACTIVE PROTEIN, SJOGRENS AB, and some additional Antibody tests. The only test that showed slightly abnormal was the ANA (Antinuclear Antibody) which resulted in 1:160 titer. The ANA test was repeated a 2nd time and that test indicated a normal ANA titer.

The Lyme testing (ELISA test) was conducted twice. Since the ELISA test is only about 50% accurate, the same test was repeated a 2nd time. Each time it came back negative for Lyme disease. For further peace of mind, after going through some hurdles, I was able to get my PCP to agree to ordering the Western Blot version of the Lyme testing, which is more specific and about 80% accurate. I am currently waiting on the results of this. I suspect this too will be negative, but wanted to feel (more) confident about ruling Lyme disease out as a possibility.

Within the past 2-3 weeks the dull achy pain I had been experiencing in my left shoulder has stopped for the most part, however I am now experiencing a variety of neurological symptoms, including; muscle spasms in my upper back and legs, tremoring/shaking in my arms, irritation and minor distortion in vision in the outside corner of my right eye, muscle cramping on the inside of my right knee, and general fatigue in my legs. I’ll wake up in the morning after getting a full 8-9 hours of sleep and my legs will feel like I’ve been running vigorously for several hours.

As the Neurological symptoms we just occuring my PCP referred me to a local Neurologist who I had my first visit with this week. I was not very impressed with his lack of concern and uncaring nature but I explained all of the above history and current symptoms and he basically said he had no idea what could be causing all this. I finally had to mention about what he thought of the possibility of this being MS, and all he would say is that I was showing some signs of it, but didn’t offer up any other conditions that might be causing all this. I asked whether it would help rule out or focus more closely on something specifically if we could do an MRI of the brain. He did agree to submitting a request to get authorization from my insurance to do an MRI. He mentioned that some lesions in the brain are normal due to age and minor injuries, but that there is a way to distinguish those from ones caused by MS.

I am thinking of getting a 2nd opinion from another Neurologist but not sure if I should first wait to see what the MRI results provide, and then decide whether to find another general Neurologist, or one who specializes in MS (depending on MRI results). I’m concerned my symptoms seem to be occuring quickly and that I need to get a diagnosis as quickly as possible. Is it normal to have multiple symptoms occuring this early on?

I also wanted to ask if I should be asking the doctor to order a specific MRI of the brain (i.e. with/without contrast, etc)? Is there any other conditions that still could be causing this, other than MS? While trying to work through the battery of testing, is there anything I can do myself to keep this from progressing faster? I feel helpless and want to be as proactive as possible.

I appreciate any feedback and/or experiences others have had.

Thanks,
Kevin

Hi Kevin,

Thanks for sharing your story and sorry to hear what you have been through and that your neurologist hasn’t been more supportive.

I am recently diagnosed with MS - it started with a MRI scan but my lesions were fairly small so they did a lumbar puncture to confirm my diagnosis. I believe a lumbar puncture can identify other neurological conditions too so it might be worth pushing to see if they can do one to see what is going on.

I’m based in the UK so appreciate there is a difference in how tests are conducted but it may be worth discussing.

I hope that helps

Charlotte