Neurological symptoms over the past 9 months persist despite lot of testing

[kdrymer]

Hello - I've been experiencing Neurological symptoms over the past 9 months that has me very concerned that it is possibly ALS. I apologize in advance for my lengthy story, I feel that it is necessary though to provide complete picture.

I am a 34 year old, otherwise healthy Male. This all started approximately 9 months ago last December. I was working on cutting up meat from a deer when I cut the tip of my Left middle finger with a knife. I cleaned the cut up, put Isoprophyl Alcohol and a bandage on it, and didn't think too much about it. Within 3-4 days I started experiencing some minor numbness in my Left ring and pinky fingers. I thought this was a little odd because the cut was to my middle finger (Median Nerve), yet I felt numbness in the ring and pinky fingers (Ulnar nerve). Nevertheless I was referred to an Hand/Arm Orthopedic specialist, to which they examined my arm and hand and did not note any issues, but ordered an X-Ray of the hand, which was also normal.

Within 3-4 weeks of the initial cut to the finger the numbness went away, however I started feeling a dull achy pain in my Left shoulder area. It is not always present but has been persistent these entire 9 months and is something I continue to experience to this day. The Orthopedic provider ordered an EMG and Nerve Conduction Study tests (the first of 2 that I will have done) and again this was normal.

Over the next 2 to 3 months, as the dull achy shoulder pain was continuing I started noticing very minor muscle twitching occuring in my back muscles. After a few weeks I noticed that the twitching started occuring more frequently and also in other places in my body, including my legs (calfs), knees, and upper arms (both sides).
My PCP ordered a lot of bloodwork on me, and the only test that showed some abnormality was the Autonuclear Antibody (ANA) test for autoimmunity, which showed a slightly positive autoimmunity pattern. However this test was repeated and on the 2nd occurrence had normal levels. I was also tested for Lyme disease with three different lab tests; ELISA, Lyme PCR, and Western Blot. All 3 tests were negative for Lyme disease. I continued to consult with my Primary Care Provider who then suggested that I see a Neurologist.

The first Neurologist I saw didn't offer a whole lot of information to us, however we asked about the possibility of Lyme disease or Multiple Scleorsis (MS). He gave us information on a Lyme specialist in our area and also ordered a Brain MRI for me. I held off on contacting the Lyme specialist because it seemed like my symptoms were more closely associated with possible MS. I had the Brain MRI completed and again the results of the Brain MRI were normal.

It was then suggested by my Primary Care Provider that I see a Neuro-Muscular specialist. I saw the Neuro Muscular Neurologist in early July and a 2nd EMG/Nerve Conduction Study test was performed, as well as a thorough physical exam. The Specialist told me that my results were again normal and that he saw no signs of any neuro-degenerative or autoimmune related diseases. While I was pleased that it didn't appear to be a MS/neuro-degenerative I still wanted to know what was causing my symptoms.

In August I saw another local Neurologist who ordered a MRI of the Cervical and Thorasic Spine, and bloodwork for Methylmalonic Acid, Copper Serum, Heavy Metal Screen, Vitamin B12, Vitamin E, and 24 hour Urine sample. All of these tests, including the MRI were normal.

At this point I thought I would make an appointment with the Lyme Specialist. I saw the Lyme Specialist in September (who is more geared toward natural/alternative healing) and he didn't believe I have Lyme disease, but possibly something called Bartonella, commonly known as Cat Scratch Fever. Even though my symptoms were not matching the typical symptoms of Baronella I agreed to have blood testing done for this, which I am currently awaiting the results for.

Flash forward to the past week or so. My muscle twitching seems to have gotten noticeably worse, and I now have twitching occurring on my face (around my Left eyelid, and my Left cheek muscle(s)). Also I feel more fatigue in my legs, usually near my Hips and I have to sit down after standing just for a short while. The stiffness in the legs also seems to have increased. Another symptom I have noticed more if what I can best describe as minor "ticks" (or knee-jerk type of action) where my leg muscles will just suddenly move, almost like when a doctor is testing your reflexes. I also sometimes feel like my leg and/or arm muscles are quivering while at rest, particularly at night while relaxing in bed. When using my arm muscles to do routine tasks around the house they usually shake, and this shaking also occurs in both my hands. As I stated earlier, my dull achy left shoulder pain also is persisting to this day.

I started doing Google searching (I know I shouldn't have!) and one of the first results for the above symptoms is for ALS. This caused me a ton of distress and I have been very emotional over the past few days. I contacted the Neuro-Muscular provider who I saw in July and explained these most recent symptoms, and asked whether I should be see again and/or have another EMG test performed. He responded that I "Do not have ALS" and seemed pretty confident about that, even though I seem to have a lot of the classical symptoms of it. My concern is that the EMG test was performed in July, when symptoms were more mild than today and therefore wouldn't have shown any nerve damage, and that if it was performed again (3rd time) that it may perhaps indicate damage. I will note that I do not have drop-foot, or slurred speech, but am unsure if all ALS patients would experience this, especially early on. I'm not sure where to turn to next...

Hopefully this has provided a pretty good picture of my 9 month journey. I appreciate any and all feedback you can provide me with. Thank you very much.

Kevin

 

[KarenNWendyn]

Please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

So you have seen three neurologists, including one neuromuscular specialist, since this all began, none of whom felt you had ALS. And you have had two EMGs, both of which were negative, and no muscle function failure.

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described.

You are cleared of ALS. Any PALS here including myself would have been overjoyed to have heard those words from a neuromuscular disease specialist.

My concern is that the EMG test was performed in July, when symptoms were more mild than today and therefore wouldn't have shown any nerve damage, and that if it was performed again (3rd time) that it may perhaps indicate damage. I will note that I do not have drop-foot, or slurred speech, but am unsure if all ALS patients would experience this, especially early on. I'm not sure where to turn to next...

The EMG cannot be done too early. By the time someone with ALS notices the first symptom, denervation has already taken hold and will show up on the EMG. In fact the EMG will often show abnormalities in asymptomatic areas in someone with ALS.

The fact you still believe you may have ALS despite all the above and reassurance from a neuromuscular specialist that you don’t have it, screams health anxiety.

You ask where to turn next. See your primary care physician for help managing your health anxiety, let go of ALS, and enjoy your life.

 

[kdrymer]

Karen thank you very much for your feedback and reassurances. I am so sorry to hear about your situation, but I thank you for helping other people on here with your feedback and experiences. I absolutely have something neurological occuring, and I'm scared that no one has been able to diagnose me with anything yet. If you or anyone else knows of any specialists in the US that focus on undiagnosed neurological conditions I would be interested in knowing who they are. Take care.

 

[affected]

@kdrymer Karen suggested you go back to your PCP not a neurologist. Ask them for help with your anxiety and what they think you should do. Truly that's all we can suggest here, and we wish you the very best working on this with your doctors.

 

[lgelb]

So you "absolutely have something neurological" that no one in the field can diagnose? You have no motor or sensory deficits? Why would you want to spend any more time chasing mirages?

Were I you, I'd be looking into palliative modalities like therapeutic massage and PT, even low-tech interventions like a heating pad, and living my life, while re-evaluating sleep, stress, exercise, hydration and nutrition, all of which are much more likely to be affecting your life than some undiagnosed mystery condition.

Trauma and the power of the mind can do strange things, but neither is worth the weight you are giving it. I would stay away from the alternative Lyme/Bartonella provider gravy train, whose prescriptions can cause grave harm, absent independently replicated lab results.

Best,
Laurie