Neurological symptoms, numbness in hands and lips

[Diwi9]

Many people consider ME/CFS, especially ME, a neuro-immune disorder. I'm familiar with the normal neurological symptoms, like dysautonomia/photo-sensitivity/hyperacuity. I'm curious if others experience additional neurological symptoms...and what they might include?

My main issue is that my hands go numb when I'm asleep, it is bilateral. Symptoms are worst during a flare/crash. It doesn't matter what my body position is during sleep. It used to only affect the ulnar nerve (ring/little finger & thumb), but is now regularly in the medial nerve (middle & pointing finger) too. I also have a recurrent buzzing feeling (like a cell phone on vibrate) in my left foot. Also, I occasionally experience numbness in my lips, like I can't tell if my mouth is open or closed unless I move my mouth. Last week I had no proprioception in my upper mouth, it was is if that part of the body was missing, for lack of a better way to explain it. There is no pain, but the symptoms are concerning.

I'm going in for additional MRI's on Friday of my cervical and thoracic regions. I'm familiar with these symptoms occurring in Lyme, but not ME/CFS. So far my Lyme tests have been negative, other than ehrlichia (IGM = 20, may or may not indicate infection; IGG >/= 160, indicating active infection). So far my specialist is not treating the ehrlichia...maybe just a past infection? I'm waiting on final ePCR results for bartonella from Galaxy Labs.

Does any of this sound like ME/CFS symptoms to others? I'm worried about a possible differential diagnosis. I have two family members with MS.

 

[TrixieStix]

I have neurological/nerve issues in addition to having ME/CFS. I believe these symptoms in my case are not caused by ME/CFS but rather by another yet to be diagnosed condition. I had a brain MRI with contrast (to MS protocol) done last year when I wqs a severe "flare" of neuro symptoms in order to rule MS out.


I have classic small-fiber peripheral neuropathy symptoms (I am in my 30's with no obvious risk factors) and they started a few years before I developed ME/CFS. I am getting a skin biopsy ( taken from lower leg) in a few weeks to officially diagnose the SFPN. I have other nerve issues as well. Early this year I had onset of severe dry mouth and was just diagnosed with dry eye (decreased tear production) and this caused my doctors to want to test me for "Sjogren's Syndrome". A % of people with Sjogren's Syndrome get neurological symptoms before (can be years before) they start to experience the classic 'sicca" (dry eyes and/or mouth) symptoms typically associated with Sjogren's. So I am still in process of testing for Sjogren's. I was negative for the 2 autoantibodies (large % with Sjogren's are seronegative) so I am supposed to have a lip biopsy done next.

I actually tested positive on the standard CDC Lyme IFA test and IgM western blot (IgG negative), but I think in my case it's a false positive as autoimmune conditions among other things are known to cross-react and cause this to happen.

 

[Hutan]

So far my Lyme tests have been negative, other than ehrlichia (IGM = 20, may or may not indicate infection; IGG >/= 160, indicating active infection).

I think you should follow-up on the Ehrlichia with your doctor.

When we lived in Asia, our dogs got infected with Ehrlichia or Anaplasma. It caused them to become very ill. Ehrlichia can result in chronic infections and can cause neurological symptoms.

There are different species of Ehrlichia, and Anaplasma is closely related. If the version that you have is different to the one the test identifies then that might explain equivocal results.

 

[Mrs Sowester]

I have those symptoms @Diwi9. They are worse when I've been doing too much. I had 2 MRIs and a lumbar puncture which ruled out MS and gave me peace of mind.

 

[charles shepherd]

Brief MEA notes on sensory symptoms in ME/CFS:

1 There are a number of neurological symptoms involving sensation - loss of sensation, increased sensitivity to touch/pain, unusual sensations/paraesthesiae/'pins and needles' - that can occur in ME/CFS. However, it is sometimes very difficult to know whether they are part of ME/CFS, or a sign of another medical problem

2 Other causes of sensory symptoms include vitamin B12 deficiency, diabetes, hypothyroidism, MGUS/monoclonal gammopathy of unknown significance - which can cause numbness or tingling in the hands and feet and balance problems, and Sjogren's syndrome.

They can also occur in anxiety and when people overbreathe/hyperventilate.

Reliable source of more detailed information:

http://www.nhs.uk/Conditions/Peripheral-neuropathy/Pages/Causes.aspx

3 So it is important to properly investigate these symptoms, especially where they are of new onset, are more pronounced or have more unusual features

4 The investigation of sensory symptoms in ME/CFS is covered in more detail in the Investigation section of the MEA purple book

Re UK: If the problem continues, and a GP cannot provide a satisfactory explanation, I suggest you ask your GP if you could have a referral to a neurologist, preferably one with an interest in ME/CFS - such as Dr Abhijit Chaudhuri at Queens Hospital, Romford, Essex

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Diwi9]

Thank you for everyone's responses @TrixieStix, @Hutan, @Mrs Sowester, you've all given me leads to follow up. Thank you @charles shepherd for sharing some resources. I recently began B12 shots, my diet is pretty good as I've cut gluten and increased my low starch vegetables, but my latest fasting morning glucose was 117. The highest it's ever been. When I relapsed last year, I gained 25lbs., none of which I've been able to drop. My Sjogren's antibody tests were negative.

 

[Mij]

I've been experiencing numbness/burning/tingling, trigger thumb, borderline pain and stiffness in both my hands, it's worse at night and wakes me up and can be quite distressing at times. I also experience numb/like sensation in my lips. It started around 2 months ago and I thought it would eventually go away but it hasn't and may be getting worse.

I was thinking it was another menopausal symptom but now I'm not so sure.

 

[Diwi9]

@Mij - sounds like we're in the same boat. I get trigger thumb too...

 

[Mij]

@Diwi9 do you also feel this type of sensation in your arms at times?

I don't feel it's neurological though but possibly viral?

 

[Diwi9]

@Diwi9 do you also feel this type of sensation in your arms at times?

I don't feel it's neurological though but possibly viral?

Yes, I experience more as weakness in my arms, it can extend up to the shoulder. Sometimes the nerves in my elbows feels sensitive on bending and extending my arm. I will let you know what happens with my MRI's...hopefully an explanation.

 

[Mij]

Wow, we are experiencing the same thing. I hope it isn't anything serious.

 

[TrixieStix]

My Sjogren's antibody tests were negative.

Do be aware that around 30% of people who have Sjogren's are negative for the Sjogren's antibodies which is why many people must do a lip biopsy in order to be diagnosed. It is not at all sufficient to rule out Sjogren's with just blood testing. My rheumatologist referred me right away after my negative antibody tests to an ENT to have a lip biopsy done, but I haven't made the appointment yet.

"There is no single test that will confirm a diagnosis, and someone does not have to test positive for all tests related to Sjögren’s to be diagnosed with the disease. However, the more tests that are positive, the easier the diagnosis. If a patient is not positive for the blood test for the autoantibody SSA, one of the clearest blood test markers for Sjögren’s, then the diagnosis is more difficult. Since about 30% of patients are negative for this marker, being negative does not mean the patient does not have Sjögren’s. A physician will have to determine the diagnosis through symptoms and other tests. A positive lip biopsy is considered the “gold standard” for diagnosing Sjögren’s, and if a patient and her or his doctor decide to confirm a diagnosis with this test, the patient most likely will be sent out to a specialist. Until we discover and validate better and more specific biomarkers, diagnosing Sjögren’s can sometimes be an “art” based on the physician’s assessment of symptoms plus objective tests"

https://www.sjogrens.org/home/about-sjogrens/diagnosis

 

[TrixieStix]

Yes, I experience more as weakness in my arms, it can extend up to the shoulder. Sometimes the nerves in my elbows feels sensitive on bending and extending my arm. I will let you know what happens with my MRI's...hopefully an explanation.

Shortly before I developed ME/CFS I was diagnosed with "Neurogenic Thoracic Outlet Syndrome" and in my case it was caused by being born with extra ribs called cervical ribs, but it can develop due to other reason as well (car wreck, repetitive motions, overhead work, etc).

I had been dealing with terrible pain, muscle weakness, numbness of my pinky and ring finger (down my ulnar nerve), etc in both my arms (worst on my dominant side) for 13 years. I had gone to doctors years before complaining and had MRI, xrays, therapy, etc and no doctor could ever figure out what was causing the symptoms until a few years ago when I read about TOS online and realized it was describing my exact symptoms. I was seen by a great doctor at a large teaching hospital who confirmed that TOS was indeed what was wrong with me. In my case it was quite severe (ppl who develop it due to extra ribs tend to have severe symptoms) and resulted in me having to fly cross-country for major thoracic surgery at Massachusetts General Hospital in Boston.

https://www.barnesjewish.org/Medical-Services/Heart-Vascular/Thoracic-Outlet-Syndrome

 

[Diwi9]

@TrixieStix - Wow very good information to know for both Sjogren's and Thoracic Outlet Syndrome. I used to be a rower and when I started working at desk jobs, I'd get tightness in my thoracic region. The only thing that helped was doing pull-ups or just hanging from the bar and doing small engagements of my upper back and arms. I get flare-ups in my upper back, especially during crashes. This symptom started with the ME/CFS...I would not be surprised if it is all related to my hand numbness. Was your surgery successful?

 

[TrixieStix]

@TrixieStix - Wow very good information to know for both Sjogren's and Thoracic Outlet Syndrome. I used to be a rower and when I started working at desk jobs, I'd get tightness in my thoracic region. The only thing that helped was doing pull-ups or just hanging from the bar and doing small engagements of my upper back and arms. I get flare-ups in my upper back, especially during crashes. This symptom started with the ME/CFS...I would not be surprised if it is all related to my hand numbness. Was your surgery successful?

My surgery itself went smoothly, but it was a very painful recovery. I also developed a staph infection in my surgical site 2 weeks after surgery which my surgeon was shocked by as his infection rate is less than 1%, but it's been discovered recently that I have some degree of immune deficiency.

Unfortunately my brachial plexus nerves that were damaged due to the long-standing compression were not able to fully repair themselves so I'm left with permanent loss of a some dexterity in my hand, muscle weakness, and nerve pain. I was supposed to have the same surgery done on my left side as well at some point, but there is no way I can tolerate a major surgery like that now. I was approved for disability based on TOS as I am very limited in what I can do with and how much I can use my arms/hands.

 

[Diwi9]

@Mij and @TrixieStix - My thoracic spine MRI was negative, but my cervical spine MRI showed moderate foraminal narrowing at C7-T1, likely leading to radiculopathy. My doctor said this explains my hand numbness, arm weakness, and back pain. Interesting that all of these symptoms increase greatly during a flare.

 

[Mij]

@Diwi9 . . . ahhh, well good they found the root cause. Did they recommend treatment?

 

[Diwi9]

@Diwi9 . . . ahhh, well good they found the root cause. Did they recommend treatment?

Yes, it's crazy to finally have one solid understood diagnosis. Options are: 1) physical therapy; 2) corticosteroid injections; and, 3) consult with a neurosurgeon. I've just started seeing an ME/CFS specialist and am still trialling different therapies, so I'll wait another month before I take action...unless the condition worsens. I would like to try some physical therapy, just to learn beneficial stretches, exercises, and posture. Wouldn't mind if insurance wanted to pay for some massage!

 

[Mij]

@Diwi9 . . . how does this explain the numbness in your lips though? Or did you mean hips?

 

[Diwi9]

@Diwi9 . . . how does this explain the numbness in your lips though? Or did you mean hips?

I'm not sure it does? And that is a strange symptom. I'm still waiting for bartonella test results from Galaxy Diagnostics. I wish we had some more simple explanations for our symptoms. I have some issues at other levels too, not sure if any are outlets to facial nerves.

C2-3: Moderate left facet osteoarthritis. Mild left foraminal
narrowing.

C3-4: Mild facet osteoarthritis. Mild left foraminal narrowing.

C4-5: Unremarkable.

C5-6: Mild disc bulge and mild uncovertebral osteoarthritis. Mild
canal stenosis with minimal remodeling of the ventral surface of the
cord. Mild bilateral foraminal narrowing.

C6-7: Minimal disc bulge with minimal canal narrowing.

C7-T1: Mild uncovertebral and facet osteoarthritis. Moderate right and
mild left foraminal narrowing.

IMPRESSION:
1. Mild cervical spondylosis with canal and foraminal narrowing as
described above.
2. Foraminal narrowing is most severe (moderate) on the right at
C7-T1. Question C8 radiculopathy.
/QUOTE]