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  • kdrymer
    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, 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 numbess 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
  • golgotha
    I'm sorry to hear about your troubles Kevin, but do know there are some diseases that mimic MS and so doctors want to rule those out. You should be hoping it's one one those diseases, IMO. (And sorry, I'm not familiar with those diseases, but they exist.)



    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)?


    Not all MRIs are the same. For MS diagnosis the "cuts" of MRI and the exact power of the machine is important too. When to use contrast and not use contrast (and for you personally, the type of contrast) is important too. This mainstream MS-specialist/neurologist has some YouTube videos on MRIs from an MS perspective.

    Your neurologist should know all of these details. But IMO (I'm not a doctor) your neurologist should have some personal experience with MS (not all do!).

    Overall, the process of diagnosis is in general long and difficult. It often takes months and doctors should be and are very cautious about giving a mis-diagnosis of MS. (A diagnosis of MS typically leads to the patient taking very powerful/strong medicines, so any moral doctor doesn't want to screw that up!)

    is there anything I can do myself to keep this from progressing faster?


    I know it's trite and of little comfort (and very difficult to do!), but try not to stress over it. I've been dealing with MS for decades and definitely know (and other MSers would likely concur) that stress can exacerbate symptoms.
  • kdrymer
    Thank you so much everyone for your feedback. I realize that every MS case seems to be unique in it's development and type of symptoms, however is there any thought as to whether the symptoms I described above can be considered (somewhat) typical of someone who is in the early stage of possible MS? Do patients usually only see 1 symptom at a time, or are multiple symptoms as I described above "normal" to see in the early phase?  Does this in any way indicate that I may have more of a progressive form of MS, as opposed to relapsing-recurring type?

    I am trying to get in to see a MS Neurologist, but they seem to book out appointments a couple of months, which is disappointing. For now I will just go with the MRI that the general Neurologist reccomends, I just figured it would be worth asking for a specific type if that was the general consensus.

    I have times where I get so mad at myself for having the cut to my finger, as I really believe that was the trigger for all this, but I am trying not to be so hard on myself and just move forward.

    I do take a multi-vitamin every day, but if there are any other supplements or types of food that are reccomended, I would love to hear what those are. I really hope research will continue to get patients closer to a cure. Thanks again everyone!
  • RQManchester
    You need to cut to the chase and see an MS specialist.  They have a list on this site which a navigator can direct you to.
  • MS_Navigators
    Hi Kevin,

    The diagnostic process can certainly take time, feel overwheling and frustrating. Are the neurologists MS specialists?  If not, or if you're not sure- you can find a referral here: Find Doctors & Resources. As MS can impact areas within the entire central nervous system, it's often worthy to take a look not only of the brain/optic nerves, but of the spinal cord as well.  Contrast can be helpful, but that's ultimately a decision that you and your neurologist can make together as to what may be best for you.  Please feel free to call us with questions as well, 1 800 344 4867 option 1 for our MS Navigator Program.

    Jess, MS Navigator
  • kdrymer
    Hi all - I do have an update I wanted to share. I got a call from the Neurologist's office today and was told that the MRI of the Brain was "normal" and that nothing unusual was noted. I am trying to get clarification on what I should do next, as my symptoms are still occurring. 

    The provider did mention about me seeing a Neuro-Muscular specialist, but I'm not sure if that is worth doing, or if instead, I should try to get in with an MS-Neuro specialist. I don't know what the typical path is, in terms of what type of Provider I should see. I also did get back the results from the Western Blot Lyme test and they were negative, along with the other two (ELISA) tests I previously had done.

    With this being still very early, is it possible the brain may not display/have any lesions yet formed? Could there be lesions only on the spinal cord, and not on the brain, that would be indicative of MS?
  • sharon-peer

    Kevin, My daughter’s diagnosis was similar to what you’re describing.  The first brain MRI was okay too.  Looking back, we still wonder if something would have shown up in a spinal MRI. It took several more years, worsening symptoms and a spinal MRI to get her diagnosis.  She also had a spinal tap when changing doctors in 2011 just to be sure.  What we’re sad about are the years she missed when she could have been getting treatment.  Keep pressing and don’t be afraid to go to another doctor if you can.  She went through 3 or 4 before she found a good one.  Good luck!

  • kdrymer
    kdrymer wrote: Hi all - I do have an update I wanted to share. I got a call from the Neurologist's office today and was told that the MRI of the Brain was "normal" and that nothing unusual was noted. I am trying to get clarification on what I should do next, as my symptoms are still occurring. 

    The provider did mention about me seeing a Neuro-Muscular specialist, but I'm not sure if that is worth doing, or if instead, I should try to get in with an MS-Neuro specialist. I don't know what the typical path is, in terms of what type of Provider I should see. I also did get back the results from the Western Blot Lyme test and they were negative, along with the other two (ELISA) tests I previously had done.

    With this being still very early, is it possible the brain may not display/have any lesions yet formed? Could there be lesions only on the spinal cord, and not on the brain, that would be indicative of MS?


    Hi Sharon - Well this isn't what I was hoping to hear but is still good to know. The Neurologist at this point is reccomending that I see a Neuro-Muscular specialist, do you think that is still worthwhile to see next, especiallist considering the next available appointment may not be for a couple of months? I'm just torn with which direction to take this now, being that the brain MRI showed as normal. Perhaps the Neuro-Muscular specialist would order a spinal MRI and/or spinal tap? Yesterday I was back to have more of the left shoulder achy pain again, while my hands/arms only had slight tremoring. It seems to change every day slightly.
  • sharon-peer

    https://www.cedars-sinai.edu/Patients/Health-Conditions/Neuromuscular-Disorders.aspx

     

    Kevin, I attached a link to Cedars Sinai Hospital Neuromuscular Program.   I am not qualified to give you medical advice, but from reading this, they do classify MS into that category of diseases.  That would lead me to believe you could get proper guidance from a doctor in that field.  One of the MS Navigators (800-344-4867) may have better info for you.  Hope you feel better and this becomes a distant memory.  If not, sounds like you’re asking all the right questions.  Hang in there.  Sharon

  • kdrymer
    Something else that I wanted to share that seems to be occuring more frequently now. I've noticed at night, while trying to fall asleep that the left side of my face has had some involuntary muscular twitching, mostly around my upper cheek area. This can be alleviated by turning over and sleeping with my left side of my face lying on the pillow. I also will get this random itching in my face. I did a little research and it seems these may be referred to as Hemifacial spasms. Just wondering if anyone has experienced these early on in their MS journey?
  • kdrymer
    Hello all - just wanted to provide an update. I had an appointment yesterday with a Neuromuscular specialist. He did an extensive physical examination and then performed both an EMG and Nerve Conduction study. At the end he concluded that he strongly believes I do not have a neuromuscular disorder, or show any signs of muscle atrophy. 

    While this is good news in the sense that is likely not a muscle degenerative disorder, it brings me back to square one. I asked about the likelihood of this being MS and he felt it was not based on the clear brain MRI but said I could see a MS specialist if I wanted to. He seemed to suggest that my symptoms are more psychological and that I should take a break from seeing specialists for a couple months.

    I have an appointment tomorrow with my Primary Care Provider to re-group and go over what I have had done, as I have not had an appointment with him in a couple of months. I am considering asking him about both having an MRI of the spinal cord, as well as a referral to a MS specialist. 

    I'm looking for feedback as to whether it would make sense to request a spinal cord MRI first and then depending on the results, then have a referral to a MS specialist if something suspicious was seen. The other option is to hold off on the spinal MRI and just be referred to the MS specialist to see what their recommendations are. Of course I would need to get my PCP to agree to one of these options.

    I continue to have the same symptoms. I have the intermittent left shoulder pain, along with the muscle spasms/twitching in the calves (legs), upper arms, and left eye-brow area. I also have what feels like tears behind the outside corner of my eyes (only 1 eye at a time does it occur though). 

    Anyways, what are your thoughts? Perhaps I should be looking at seeing a Rheumotologist or Immunologist? Thanks in advance.
  • maria1
    A second opinion by an ms specialist besides an mri  may be a better way to go than to stay with someone who does not make you feel comfortable.  As well as someone who is familiar with ms symptoms.