Worrying Symptoms starting with Rabies Vaccine

[SteveinNC]

Hi everyone, first off let me say I have a ton of respect for those folks and their families dealing with this disease. I wanted to share my story and symptoms and see if there are any recommendations for next steps. I feel like I’m at a dead end with my neuro but my symptoms are getting worse.


Anyway, I received the rabies vaccine course (Rabavert) beginning on 10/30/23. Since the second dose I began feeling tingling in my hands and feet. By the end of the course, approximately 11/15/23, this had evolved into twitching across my entire body. I had a Neuro exam on 12/18/23 where the exam was normal. The following week I experienced an intense burning pain in my right arm and started to have spasms in my legs and arms when falling asleep. The pain in my right arm continued to intensify, and I had a NCS and EMG performed on my right arm and right leg on 1/16/24, which the results were normal. Two weeks later I developed a constant twitch in my right index finger for about 6 weeks. The pain in my right arm and twitching all over continued and I was referred to have a cervical spine MRI with and without contrast on 2/17/24, of which the results were normal with no nerve signal abnormalities. During this time the pain evolved into a feeling like my arm was disconnected from my body in a way.The best way I can describe is when I flexed my right bicep I couldn’t feel the “knot” in the bicep you may feel when flexing hard. I also began feeling it “creeping” to my left arm, best way I can describe it. Twinges of pain/tightness here and there in my left shoulder and arm.

I saw my orthopedist two weeks ago who performed an exam and noted weakness in my right arm from my extensors, bicep, tricep, and shoulder. He suspected Parsonage Turner Syndrome, and prescribed a 12 day prednisone pack for inflammation. While taking prednisone my symptoms somewhat reduced, twitching right index finger stopped twitching, and pain was much less. I felt really good on the medicine, not back to “normal” but I had energy for the first time in months. However since finishing the course, the symptoms have returned at a higher intensity. The feeling of disconnectedness I had in my right arm, I now feel in my left as well. My right shoulder is now noticeably weaker, but i can still use it but it gets fatigued very quickly. And I now don’t feel the “knot” in my left bicep as well. More recently for the past week I also have a burning sensation and fatigue in my quads making it difficult to walk up stairs or stand for long periods. I have noticed some breathing difficulties lying down (not sure if this is annxiety or real) and I am also experiencing a lot more twitching across my body from my feet to my face, especially on the bottom of my feet and around my eyes. I have a follow up appointment in late June, however any help or guidance you can provide in the meantime would be greatly appreciated. Im so fatigued every day both mentally and physically I’m just trying to get to the bottom of what’s going on. I’m also scheduled to see a therapist this week to discuss the anxiety I’m having around these symptoms.

Thank you and best wishes,

Steve.

 

[Nikki J]

The whole thing doesn’t sound like als. Are you currently under the care of a neurologist or orthopedist or both? There are reports of rare neurological symptoms following rabies vaccine. No cases of ALS though and of course correlation isn’t causation.

I would find a good academic neurologist to see. Good luck

 

[ShiftKicker]

Hello-

Your symptoms don't really point towards ALS- sensory issues, improvement with steroids or time, issues that come and go all point in a different direction. It sounds like your orthopedist had some ideas and will be following up. Have you spoken with them since you finished the course of steroids and your symptoms increased again?

It's hard not to have answers, especially if things are affecting your day to day function. I am sorry you're experiencing this stress. ALS doesn't appear to be the issue. Make sure to read here for some more information and reassurance about why your pattern of symptoms does not fit into what would cause a doctor concern about ALS: Read Before Posting

 

[SteveinNC]

@Nikki J thank you for the reply. Currently under the care of both. I have a follow up with the Ortho next week to discuss next steps there. I am also in contact with the local university health system to see if there are any doctors there willing to take my case.

It has been a wild ride. Given that I’m only 36 and prior to this was running half marathons, it’s been quite a mental struggle along with all the physical stuff.

Stay well and again thank you.

 

[SteveinNC]

Hello again,

Just an update I followed up with my ortho who got me in quickly for an EMG/NCS of the right arm to test their PTS theory. The Dr looked all up my arm, neck, and back, everything was normal and similar to my previous EMG in January. So based on 2 normal EMGs (although limited to the muscles I have had the most issues with and not full ALS work up) I think I can put ALS aside.

Working on getting a follow up with my Neuro and a second opinion at the local university hospital to continue to investigate the causes of my symptoms.

One additional question I have is that for upper motor neuron disease, I have read that it presents with weakness and fatigue in the limbs, and sometimes occurs with twitching. Is this a possibility I should ask my Dr.s about next appointment? I feel like I do have days where my balance is a bit “off” and I have had some spells of intense nausea after moving around over the past few months. The initial episode of pain in my right arm occurred the day after I had to lie down for 4 hours after getting so dizzy from spinning around a few times.

 

[Nikki J]

Upper motor neuron disease is detected on clinical exam. If you have it it should be obvious to your examining clinician. It wouldn’t be something they miss. Yes people with umnd are weak but that isn’t the first symptom or the only one.

Good luck with your follow up

 

[SteveinNC]

Hello again,

Since we last touched base my symptoms have pretty much remained the same, twitching, perceived weakness in right arm/hand and sometimes right leg, and major fatigue in both legs. Interestingly over the last couple weeks I have noticed my swallowing feels less strong. The muscles at the back of the throat don’t seem to be pushing things down as they used to. I had a follow up with the Neuro this week and I spoke to them about my concerns and symptoms, and mentioned the swallowing concern. They Did a fairly comprehensive exam of testing strength and looking at mouth, etc. At the end of the exam they said they don’t believe what is happening to be Neurological and that it doesn’t really fit the description of MND or MS, and could be muscular in origin.

So they ordered blood work (sed rate, proteins, immune marker stuff) and an MRI of the brain to be sure. The blood work has come back normal. So now I wait for the MRI.

The thing that has me concerned is the recent swallowing weakness. I am able to speak just fine, but I am noticing small bits of food getting stuck and difficulty swallowing saliva sometimes. I have had 2 emgs of my right side although neither tested the face, but I’m trying to tell myself they would likely have shown something if there was a peripheral nerve issue causing the swallowing right?

 

[Nikki J]

You started with limb symptoms. You had an emg and a neuro exam/ consult and they said not als/ neurological. Even discounting the fact that the neuro is aware of your swallow concern and did not think it was concerning neurologically, do you think you have something else affecting the limbs and coincidentally started bulbar ALS. If your swallow is an issue go see your pcp and discuss either a swallow study or an ent

 

[Clearwater AL]

Steve, I don’t post much anymore… but we often see when a poster
in their 30s who starts out with limb issues then when that gets
dismissed with EMGs, following they begin to develop swallowing
issues thinking the EMGs that cleared them didn’t go far enough.

Upper Motor Neuron Disease is not determined in one, two or
just three exams, it could go on for a year or more before there is
a firm diagnosis.

All this brings to light, in your situation, Health Anxiety… you may
give some thought to. At just 36 years old I hope the path to a good
healthy life without the worrying burden of having a terminal disease
comes soon.

 

[lgelb]

Swallowing comfortably relies on being hydrated and getting enough refreshing sleep. Wearables and smart scales can weigh in (pun intended) on both. I agree that your dismissal of ALS a couple of weeks ago was appropriate -- you are well advised to keep going in the "how can I feel better" direction instead of the "what if I have a fatal disease" direction. Not to mention, stressing over the latter question is not a recipe for health.

Allergies and GERD, which can rear up at any age, are also worth considering both because they can affect swallowing and bc they can worsen your sleep. And the issues you perceive on your R side/legs can also relate to low energy secondary to poor sleep. If you had acute inflammation secondary to the vaccine itself or the injections, that can certainly send your body into overdrive, but you don't have to follow it onto the racetrack.

I agree there seems no reason to worry about ALS or anything like it. And yes, considering the order of feelings you report, two normal EMGs is a ruleout, your worries about swallowing notwithstanding.

 

[SteveinNC]

Thank you all for your kind words. I appreciate you taking the time to reply. Best wishes.