Very concerning symptoms

[Momto2]

Thank you all for reading my post. I will make it as short as possible. I appreciate any replies or thoughts that you can offer.

I am a 46 year old female. My symptoms started in August during a time of high stress and also the rabies vaccine series. My GP and the CBC states the vaccines should not be causing these symptoms. I did and do have a low WBC of unknown origin that made me immune compromised during the vaccine series.

I started with major cramping and spasms body wide along with random twitching all over body. I have been known to twitch when I am stressed so I wasnt too concerned with twitching. The cramping was awful though. Everywhere..fingers, hands, feet, thighs, calves, forearms, abdomen etc. It has lessened a bit the last two weeks but was so strong for about 7 weeks that my muscles would be sore to the touch after cramping so hard and long. Bloodwork for B12, Magnesium, Potassium all normal.

I am also having problems with my grip in my R hand. I cannot seem to grip things like I used to..things slide out of my hand. I have dropped a few things in the last month. Maybe this is me being hyper vigilant..I am not sure. My husband has a little machine that measures grip and it states my grip is normal. I feel like its in my pinky and ring finger though so I am not sure if it is measuring correctly. They just act clumsy and uncoordinated.

Now the most concerning symptoms began approx two weeks ago. I cannot drink or eat without the excess phlegm immediately appearing and its behind my nose (not my throat) and impossible to clear. Everytime, I drink, the fluids go up my nose. . So much, that I am in a lot of pain in my nose, sinuses and my forehead. Its like it is a raging sinus infection. Im miserable. I also sneeze sometimes after drinking. My upper lip is tremoring or twitching. I can lay my finger across my lip and it is a constant vibration.

I saw the ENT last week and he said no sinus infection. He also said my tongue did not have fasciculations nor did it have atrophy. He also said my soft palate was rising symmetrically.He has only seen bulbar ALS once in his 25 yr career but he said he did not think this was ALS. I am very worried it could be the beginning stages.

He ordered a swallowing test and I am terrified of the results. (I have no history of allergies or GERD)


The other night, I was having issues actually swallowing. It was like the muscles would spasm and I could not get the saliva to go down. Happened 50 plus times. I was quite anxious so this part could have been stress and anxiety.

Needless to say, I am very scared. I just do not think this could be anything but ALS. Please be honest and let me know your thoughts.

 

[Momto2]

I also want to mention that I have a regular neuro appt but the earliest I could get an appt is mid Dec.

 

[lgelb]

Have you tried a nasal steroid?

I don't know who's saying a rabies vaccine series can't cause the issues you describe, when the label clearly states otherwise. And as you note a low WBC could signal a more difficult accommodation to the vaccine.

However, most often what you describe in terms of swallowing is anxiety.

Lessening of the cramping is encouraging. Hopefully the neuro appointment and any testing will reveal that your motor nerves are intact.

A GP should not be managing your case. Do you mean an internist? I would certainly be seen at an academic medical center.

Bottom line -- you should be followed but ALS does not seem to be in your picture.

Best,
Laurie

 

[Momto2]

Laurie,

Thanks for your reply.

Ive only seen the ENT and my family dr. Very hard to get into specialists.

I talked at length to the CDC and the Dept of Health about the rabies side effects. They said there isnt a lot of reports of long term side effects.

I had a very strange thing happen w my jaw a few hours ago. I was drinking water, have been very thirsty due to not wanting to drink because of liquid going up nose, and as I was drinking, my left jaw had three long spasms without any pain. My entire left jawline did this. Was a very odd thing and really scared me. Several weeks ago, my jaw spasmed so much that it made my lips pucker. That was different though. It was like my chin was what spasmed.

Is it possible the vaccine could have triggered ALS? Are there reports of anything similiar that you have heard about?

So very worried and scared.

 

[Momto2]

Anyone else have any thoughts? I have the swallowing study tomorrow and I am petrified. Now when I drink, it makes me ears hurt so bad along w my nose and sinuses hurting and burning w drinking.

 

[Nikki J]

That does not sound like anything any of my family members experienced. Nor have I heard it described. And when being asked by neuros about possible bulbar symptoms ( I have none so far, knock on wood) those are not things they ask about.
Good luck tomorrow

 

[Momto2]

Nikki,

Thank you so much for your reply and good wishes.

The liquids up the nose is worrying me quite a bit along w the phlegm stuck behind my nose and throat after eating.

Im praying this is nothing organic and maybe its just side effects from the vaccine but the neurological symptoms keep progressing instead of dissipating.

Praying the bulbar symptoms continue to be absent for you.

 

[Momto2]

I had the barium swallowing study today. It was not the news I prayed for at all. I am sitting here, absolutely terrified.

Study shows weakening of soft palate. A small amount but enough that small amounts of liquids are going into my nose.

I questioned the radiologist about findings and he did say this can be a marker of ALS.

Im just so afraid.

I just tried to get an appt at the neuromuscular clinic at the Cleveland Clinic and they are not sure my insurance will approve it. They will call me back within 3-5 business days after speaking with insurance for approval.

I feel like I have been given the definite diagnosis. I am so numb. There's really not many other differential dx for this. Add in my cramping and twitching and possible weakness in my right hand and I see no hope at all.

Would this be considered limb or bulbar onset? All of these symptoms started end of July/beginning of August.

 

[codyclan]

You are really jumping the gun. You have not been given a definite diagnosis. Only a radioligist even mentioned that it ALS could possibly have a similar marker. That is nowhere near a diagnosis given the fact that you don't have any clinical weakness (I know, a soft palate weakening, but that is not in any way definitive). My husband is bulbar onset and has never had the symptoms that you are describing.

So here's the thing by focusing on ALS you may a maybe limiting the diagnostic process. You say there is no other deferential diagnosis but you are not a doctor and you actually don't know what else it could be. You need to work with your docs but your focus on ALS is certainly premature and it is still extremely unlikely given that ALS is a very rare disease.

Take a step back, take a deep breath and allow your docs do their job.

 

[Momto2]

Cramping is not good tonight at all. I dont see what else this could be w the palate weakness.

I do not know if I have clinical weakness besides the palate. I have not been given a clinical neuro exam.

Anyone else have any thoughts? Feeling pretty lost and scared.

 

[lgelb]

Mom, a neuro hasn't examined you. You haven't had an EMG. There's no way we can jump to ALS from what we have so far.

You had a vaccine series, have been under stress (I would think if only from being exposed to rabies!), and have a low WBC count (any other abnormalities? which cell type(s) are low? what did the peripheral smear show?). There's a lot going on here.

Moreover, there are multiple causes of bulbar and pseudobulbar palsy (if indeed that's an accurate label for the soft palate weakness), not only MND.

It's way too soon to lose hope.

 

[Atsugi]

Honestly, we know ALS pretty well, and you didn't describe it.

You've given yourself a terminal diagnosis because a radiologist who probably knows nothing of ALS made a comment he shouldn't have. He shouldn't be saying things that could make nervous patients think they have a terminal diagnoses. His job is to read images.

One person who has lived a lifetime surrounded by ALS, and who has lost a lot of family members--and is dying, herself--gave you excellent advice. She is really smart on ALS--like world class smart. Two people who have lived with ALS 24/7 for years have given you excellent advice. And you ignored them, too.

You said something very wise: "I dont see what else this could be..." YOU'RE RIGHT. You don't know. There is no way you are qualified to diagnose ALS. But yet you are insisting that you have a terminal disease.

You asked us for honesty. There it is. Your symptoms started during a time of high stress. I suggest starting there. I think you really need to include a mental health professional in your search. A psychiatrist (not a psychologist) would be most appropriate because a psychiatrist is an MD who understands both the body and the brain. Expensive, yes. But worth it.

Good luck. Calm down. Rely only on knowledgeable experts.

 

[Momto2]

Thanks very much for your replies.

Laurie,

The slides the hematologist sent out were all normal.
Im not sure which cells were low...neutrophils were a touch low but have since climbed a bit. The MCV is normal but has been declining a little by little. The hematologist gave me the clear and I have a f/u in January. My wbc always runs 5.3-5.8. It got down as low as 2.4 but is now hovering in mid 3s.

Cody- Thanks very much for your post. Im still terrified but I do understand what you are saying about possibly missing another dx. Im trying to get an appt at the Cleveland Clinic.

Mike-Thanks for being honest. I am all about honesty and not sugar coating. Im still having issues w fluids going up nose and with the weak palate showing on the test, it petrifies me. Yes, this all started in a very stressful time of my life but stress would not cause organic issues w weakness. Im trying to see a nm doc at the CC.

 

[Atsugi]

"stress would not cause organic issues w weakness."

Disagree. I've personally seen stress cause some really outrageous physical problems.

Glad to read you're seeing a doctor. Good luck.

 

[Momto2]

I have an appt w Dr Polston at the Cleveland Clinic right before Thanksgiving. Im extremely nervous about the appt. I am also very concerned I will progress more before then.

Im having so much cramping today. I feel like my mouth is weakening more. My left leg that cramped for 24 hrs is now very stiff. Im not sleeping because Im so worried.

Mike,
Thanks again for your reply. Im just having huge issues w wrapping my mind around this being benign or this being anything other than ALS.

I appreciate the time and feedback from everyone here.