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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
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Avatar universal

Confusing symptoms

2 1/2 months ago my husband kept telling me his upper lip was chapped, felt wind burned.  He walks about 1 1/2 hours every morning very early and thought it was the cold that chapped (the skin between the lips and nose).  This went on for 2 weeks.  I kept giving him things for chapped skin.  He kept saying that nothing was helping and that it was only on the right side.  Then he said his upper lip felt like someone had shot him with novacaine and it would not wake back up.  A week later it moved up the nose (right side).  Went to dr.  He thought sinus infection because he had a low grade fever 99.7 and they were going around.  He gave him 14 days of high dose antibiotics but also gave him a RX for an antiviral in case he broke out with the shingles.  Another week goes by and all of a sudden it moved around his eye.  He said it felt like a knot or something like someone had hit him in the eye but no pain and it was moving to his temples also.  We went to the ER on the advise of the walk in clinic that really did not want to see him so late.  I told husband that at least they would run some test.  He still had low grade fever.  ER diagnosed him with trigeminal neuralgia (NOT because no pain at all).  He gave him stearoids and had him take the antiviral both for 14 days. Also sent him for an MRI and to go to neurologist.  Neurologist said definately not trigreminal neuralgia because that has pain.  There is a spot on the left pons area that the radiologist said was a pons stroke.  He disagrees.  He said most people know when they have a stroke and it does not progressively get worse and move around weeks later and the spot did not look like a stroke to him.  He ordered lot and lots of blood test and lumbar puncture.  All test came back normal.  Now he is going for an MRA for neck and brain.  What are they looking for?  Neurologist said the fever is what is confusing.  He has it every day ranging from 99.1 to 100.9.  He does not feel as if he has fever.  He is tired but works in a physical job at odd hours.  Still has numbness ranging all over the right side of his face, including the roof of his mouth and tip of tongue.  Any help is appreciated.
17 Responses
551343 tn?1506834118
Hi and welcome to our forum.

I am sorry to hear about the problems your hubby seems to be having.

Any numbness found in the body is worrying.

Can I ask was there anything specific happening before this started? You say he works in a physical job etc, does he work with any chemicals. Did he have a virus prior to this. Have you been on holiday anywhere?

OK the problem seems to be in the maxillary nerve. The pons seems to serve as a relay station carrying signals from various parts of the cerebral cortex to the cerebellum. Nerve impulses coming from the eyes, ears, and touch receptors are sent on the cerebellum.

Any injury or blockage (lesion) in the pons area can affect the trigeminal nerve.

The maxillary nerve carries sensory information from the lower eyelid and cheek, the nares and upper lip, the upper teeth and gums, the nasal mucosa, the palate and roof of the pharynx, the maxillary, ethmoid and sphenoid sinuses, and parts of the meninges.

One of the things that jumped out at me was Bells Palsy. This can be caused by a virus (one of them herpes zoster) and can start with tingling lips you can get when the lips are feeling chapped. It can come on either quickly or slowly over about 3 weeks but no longer.

Bells Palsy can start after a bad cold or flu.

If there is a virus involved this would explain the low grade temperature. That is also why they were looking at shingles as this can be part of it and are giving him antiviral drugs and steroids for BP.

I would think a PONS stroke which is rare would have shown up more with  vertigo and other symptoms, rather then a slow onset but hey I am no doctor lol, but if the neuro has dismissed this I would think he is right.

Bell Palsy symptoms can come alongside illnesses no doubt about it even an inner ear infection.

One of them is Lymes disease. That is why i asked if he had been away or does he work near land, trees, shrubs etc, deer......

Other are auto immune like Lupus, Sjogrens syndrome, multiple sclerosis (although i would have thought the MRI would have shown lesions for that).

I would imagine they are doing the MRA to check to make sure there are no areas in the blood vessels that are narrowed which could be causing this facial problem, which to me is a good thing, they are being very thorough.

IF this comes back negative and your hubby does work outside where he could have been bitten by a tick or similar then I would suggest he is tested for Lymes.

I wouldnt panic too much right now as the tests are showing good results not scary ones.

A virus can cause devastation especially if someone is stressed and overworked.

I know it is so easy for me to say try not to worry, but try not to.

Facial paralysis is very common more common then people realise.

Big hugs Mariaxxx



Avatar universal
Actually, Bells Palsey was also ruled out and Lymes test was negative.  The neurologist said that the spot on the pons should have been more defined if a stroke (besides other symptoms don't match).  It was kind of fuzzy looking like a cloud or smudge.  I am not too good at describing it but it was kind of large.  Dr kept drawing with his hands what a stroke should look like.  
Anyway, fever has been lower but not normal.  It was 99.1 tonight and 99.5 this morning.  I am wondering about an AVM or aneurysm somehow pressing on the trigeminal nerve causing the numbness but that may not explain the spot on the pons.  Still think it may be some kind of infection.  I was really afraid of cancer that had metastitised.  Don't know if I mentioned it but what really struck me was when the dr said he could not biopsy the brain stem.  I kind of stuck on that and we did not ask questions that we should have.  I always have hind sight when seeing doctors.  
Avatar universal
Also he is a driver.  He has to lift but no chemicals.  

Another strange thing is that when he was 56 (now 61), he broke out with the hives and passed out.  It was anaphylexis shock.  He has been in the garage.  There was some lyme spilled from gardening and they though he got into something.  Gave him steroids.  About 6 weeks later he did it again.  They ask what he had eaten.  Hotdogs with red onions.  He had eaten a hamburger before with red onions.  We made an appointment with an allergist.  he said stay away from onions but could not see him for at least 3 weeks for the stearoids to get out of his system.  We did and he has another one about 5 weeks later.  This one was worse than all the others.  They had trouble getting him back.  Finally got the test and he is highly allergic to wheat.  Not gluten or celiac disease, just wheat.  I heard that people on a gluten free diet get low on B12 that effects the nerves.  His B12 was checked by the doctor also when I mentioned this but it was okay.  I still wonder about this allergy causing some of this but have no reason as to why
551343 tn?1506834118
Hi it is quite rare for an adult to have such an allergy just to wheat. These are some of the symptoms:

http://wheatallergysymptoms.org/

The problem with Lymes is unless he was tested correctly it can be missed. There is a very good post on this forum all about lymes and how it should be tested.

I think your right it probably is an infection he has picked up. When does he have his MRA?

Your poor hubby to be allergic to wheat wow. Its in everything. I am trying to stay gluten free, not necessarily because I am allergic to it but gluten can cause nervous system problems so I am avoiding it.

His allergy could certainly be causing some of his problems. Maria
Avatar universal
Just got results of MRA - they found nothing.  Still waiting on spinal tap that should be back at any time.  I don't know why it takes 3 weeks but we are not in a large town.  They had to send some of it off.  No changes at all in symptoms and still has fever.  At least nothing is changing for the worse.
551343 tn?1506834118
Well thats good then as the worse case scenario has been eliminated. I am sure  it will turn about to be a virus or something to do with allergy.

All these tests take so long to come back yes even in the UK. Its a nightmare. And in the UK even if you have something found they tell you there was nothing, believe me I know I was that person.

Was he tested for chrones, lupus and other autoimmune diseases which trigger temperature spikes?

Hugs mariaxx
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