SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Confusing symptoms
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This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

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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.
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17 Comments
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551343_tn?1350880995
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



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Avatar_f_tn
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.  
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Avatar_f_tn
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
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551343_tn?1350880995
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
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Avatar_f_tn
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.
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551343_tn?1350880995
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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Avatar_f_tn
Spinal tap came back with everything normal.  Neurologist sent us to GP so that they could compare.  The GP is good.  He went over a lot of things.  First, he said that the fever could be from something entirely different but we are going on the assumption that they are connected.  He talked about the thyroid, parathyroid and adrenal glands.  These could cause the low grade fever.  He also said he would like to see a better MRI to see if this lesion was interfering with the part of the brain that control body temperature. (I forgot the name of it).  He said that he may send us to someone in the Dallas area.  He is also talking about perhaps sending us to a endocronologist and infectious disease specialist.  He said the infectious disease specialist would look further into what was causing the fever.  He still is not ruling out lyme's.  Although there was a tick bite without a target rash.  Anyway, he ran a lot more blood test for different things that the neurologist did not.  He said the only thing that came back on the original blood test was borderline low potassium and high something else.  It was a lot to take in but test should be back tomorrow.  He also ran all cancer tests that he could.  

Wish us luck
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551343_tn?1350880995
Thats good really that the LP was clear.

I think it will turn out to be something like Lymes. You dont have to have the target rash for Lymes. There is a good link on here all about Lymes and how it has morphed and tests results are coming back negative when they are positive.

Good luck for the test results. Mariaxx
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Avatar_f_tn
Test results came back and there was a lot on there.  He has high cholesterol, but I think it is unrelated.  I think it is a result of what he eats not getting wheat.  He is a big cheese and dairy lover without his wheat.  I suppose it is now fat free now.  He wants him to take Vitamin D twice a day.  I never did figure out why.  His ACTH was low and his cortisol was low.  He is ordering more test on the thyroid.  I googled the low ACTH and Cortisol and saw where it said hypopituitarism.  That would be the pituitary gland that is located at the base of the brain, right there near the pons area.  Pituitary tumors can cause pressure on the nerves.  We may be on to something.  I also saw something about pituitary lesions.  Nurse said we could come by the office and pick up the results.  Dr. will be out a week.  The next week we return.  She said we could study the results and have questions ready for the doctor at our next visit.  I like this doctor more and more.  We go back on the 23rd, have another MRI on 28th and then see neurologist on 4/2.  Both doctors are conferring with each other.
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551343_tn?1350880995
Wow what a difference a doctor can make. That sounds interesting about the gland. Problems in this area are one of the hardest to find, but once they are the easiest to cure. I have a friend who had pituatory tumor which did just that press on nerves. They thought she had MS. Anyway its all sorted now apart from a bit of residual she is doing really well.

Oh dear not a cheese and dairy lover lol.....He can still eat cheese but not so much if his choesterol is high oh dear....I dont do dairy as i am on the MS Recovery Diet, and i have rice milk now in my cereal its quite nice actually there are alternatives but i doubt your hubby will be impress lol.

I am really pleased for you, your post just screamed out positive vibes. I just hope now you will get the answers.

On the 28th I shall be under the dentist at 6pm having my teeth out omg i am already shaking. Ihave phobia so will be sedated that is if i still get there lol, but the pain in my teeth last night i could have taken a pair of pliers to them myself. I have only 5 left because of an auto immune process which has wiped out my gums....my teeth are fine, but have no anchor.

Oh well i am tired its only 6.19 here in the morning in uk but am tired, its going to be a long day. I am hoping my mouth doesnt play up again....

Anyway enough of me, i am just so pleased things sound better for you both. xxx
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Avatar_f_tn
I finally found my post.  Husband went to a diagnostic clinic for the second time on May 9th.  He had another MRI that day and saw an edocrine specialist.  I am so upset with all of them.  He found out that he had a AVM in the pons area from the capillaries that cross the trigeminal nerve.  That is what is caused his facial numbness.  The endo said he was low thyroid and started him on meds.  He did not pass the "drunk" test during the neurological exam and the doctor did not like his left eye for some reason.  They did the MRI and found nothing.  Both were looking for a pituitary tumor. By the time we got in to see these doctors the fever had lowered to sometimes 97 and others 99.9.  It was swinging back and forth.  So we leave the May 9th appointment.  Start taking Synthroid 25mg for 14 days then Synthroid 50mg.  I am having a problem with all their diagnosis.  First he lost a total of 35 pounds prior to the low thyroid diagnosis.  I thought it made you gain weight.  He has no outward symptoms of low thyroid except for the blood test.  He looks bad like someone took a straw and sucked all the water out of him.  Other than that he feels just fine.  He has just started on the Synthroid 50mg and the symptoms of facial numbness are returning. The fever in the past two days is back up in the 100's 100.9 today.  His BP is low for him 100/65 today.  It has been no more than 110/80 the past week.  They came back with the news that his MRI revealed he had a pons stroke.  They put him on a low dose aspirin a day.  So this is confusing to me.  The endo keeps testing his adrenal glands.  All 3 test so far were within normal range but since he is a night worker, he said they are probably on the low/normal side.  This is what it said.  Your recent cortrosyn stimulation test was normal.  Baseline was 10.4, 30 min value 18.0 60 min value 19.3.  Your blood cound was nomal, your liver test were normal.  The plasma metanephrine test was normal.  Now he wants to do a 24 hour urine test.  If everything is normal, what is he looking for???  He also made a statement that his weird wheat allergy with anaphylexis 4 times (highly allergic) suddenly coming on at 55 could have something to do with everything.  I read where if your adrenaline spikes, it can cause your BP to spike and therefore cause a stroke.  I am so confused.
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Avatar_f_tn
Your story of your husband's odyssey these last few months sound like many other stories of Lyme Disease...testing negative, lots of serious/scary symptoms, no definitive answers in multiple tests, confusing and even contradictory information, multi-system symptoms.

Every symptom you describe can be caused by Lyme Disease, and every person has their own unique constellation of symptoms and disease progression. The fact that your husband had a known tick bite makes it even more likely.  Doctors who treat a lot of Lyme Disease estimate only about half of patients get a rash, and the bulls-eye rash appears in only about 25% of cases.  (The powers that be in the world of Lyme are VERY east coast centric, and don't seem to notice that there are many different presentations of Lyme and far more symptoms than are officially acknowledged).

Testing is also problematic.  There is a long ugly story about the antibody tests, but the short of it is that they are very unreliable, with way too many false negatives.  There is a specialty lab in CA that does advanced testing called IGeneX.  It is worth it!  If I hadn't ordered those tests, I shudder to think what kind of shape I would be in now. (I have Lyme and a coinfection called Bartonella.  I went through 12 doctors before I figured it out for myself and found an LLMD, a Lyme Literate MD. I have been on antibiotics for 6 months now and am so much better.)

I tested false negative in both the blood screening test and in my CSF.  Multiple doctors thought I couldn't possibly have Lyme because of those tests, but I do!  I tested diagnostically positive on an IGeneX western blot, even though I did not meet the CDC surveillance criteria (which was not developed to be diagnostic!).  

I have not heard good things about doctors in Texas knowing much about Lyme or even being willing to diagnose it.  It is one of those places where many believe there is no Lyme.  (Untrue!). I encourage you to post on the Lyme forum.  We have a regular there who lived in Texas who spoke to a doctor near Dallas who had Lyme hinself.  Perhaps she could be helpful for you in finding a doctor who knows how to diagnose it.
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I actually live in Arkansas but Dallas is the closest large metroplex around other than Little Rock which I have not heard good things.  My mother was the first diagnosed case of Lyme's in this area and she tested positive for everything.  This was 30 years ago.  She lived in a lake community and an old country doctor that retired down the street visited her.  She thought she had the flu.  Dad had just had a stroke and was staying away from her.  The doc took one look at her and told him to get her to the hospital.  He said that he had never seen it but it looked like Lymes.  She did not have a bullet rash but a rash from head to toe.  Even in her mouth. Back then the test were not good.  She tested positive for every tick fever.  I remember the doctor explaining it to me.  One by one each tick disease dropped as negative except lymes.  She was left with arthritis is her knees bad to this day.  She now has alzheimer's in stage 6 but still complains of her knees.  We don't live close to there but I have a friend that lived within 10 miles of my mom who also got Lymes.  I always connect Lymes with joint pain.
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Forgot to mention.  I pulled the tick off my husband.  It was on his shoulder.  The tick was kind of big, brown with a white spot on it's back.  I looked it up back then and it said a female Lone Star tick.  The only thing I could see they carried was rock mountain spotted fever.  I don't think I got all the tick out.  We watched it for weeks to see if a rash appeared but never did.  It still itches to this day.  That was about 2 years ago.
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551343_tn?1350880995
Hi please please please do not just think your husband would have a rash with lymes it is not true.

I saw my lyme literate doctor on thursday. OMG I have lots of stuff all about it and how hard it is to diagnosis, and your husband is presenting lymes symptoms, especially the fever. The fever can come and go around every 4 weeks like a womens periods.....

The lymes of old has now morphed into a more dangerous disease.

Although i live in the UK all my bloods are going to Igenex for testing and like Ricobord said you can have negatives which are positive. This is how complex the testing is now:

http://igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf

You can ring IGeneX and ask them how to get tested it isnt that expensive either.

I just think it would be worth your while even more so if you didnt get the tick out properly.

Look in the UK my daughter for example went to Sweden on holiday with her partner who is swedish. The stayed on the edge of a forest. My daughter new about lymes and would not go for a walk there with the dogs belonging to her partners brother, so she felt safe.

After she got home and she was having a shower they found a TICK on her back. She was taken to the medical centre and they removed the tick, and immediately put her on a course of antibiotics which is what should happen now with a tick bite.

Please take ricobords post seriously what can you loose?

I am hoping i do have Lymes in some weird way as at least i have a chance of recovery rather then getting an MS diagnosis.

My Lymes test was negative from my doctor as they only do one test for lymes and not all the rest.

If it is itching it is active with something in the bite area. You could try T Tree oil apply it twice a day on his bite site, it should help ok.

Can i ask you does he have pain in the bottom of his feet especially in the morning.

Anyway I really think you should push for a lymes test but from Igenex in view of the tick bite. xx Mariax
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Your description of the tick is consistent with a Lone Star tick.  The CDC and New England doctors who study Lyme are still insisting that Lone Star ticks do not carry Lyme.  They were forced to admit that people with Lone Star tick bites were getting a Lyme-like disease that often included multiple rashes or large/widespread rashes, not always in the location of the tick bite.  In order to stick with their orthodoxy that only Ixodes ticks carry Lyme, they declared this a new disease and called it "Southern Tick Associated Rash Illness" or STARI.  It is really absurd, as although it is a somewhat different presentation of Lyme, it is close enough that the symptoms fit, and patients show antibodies to Lyme.  

Unfortunately, this charade has resulted in southern doctors believing that there is no Lyme there.  You know from personal experience that there is!  I am sorry to hear about  your mom.  Did you know that chronic Lyme has been linked to Alzheimer's?  She could have permanent damage from arthritis in her knees, or it is possible she was under treated and has carried a persistent infection since, especially if she continued to test positive.  Our bodies do not make antibodies forever after a bacterial imfection is gone.  The belief that Lyme patients test false positive for years is just false.  I would be curious if long term antibiotics would ease her symptoms.

I got bit in Australia where there is an Australian Ixodes tick.  One doctor there reported of his 169 patients that only one had arthritis, and that patient acquired the disease in Northern California. I haven't had any joint or muscle pain or arthritis. My disease presentation is consistent with Australian Lyme, which is different than North America and Europe.  However, I have been in touch with patients with symptoms very similar to mine who got it here in the States.  My symptoms mimiced MS and IBS.  My coinfection of Bartonella has made the GI and neuro symptoms worse.  Joint pain is very common, but is not a required symptom.

To me, it makes sense that a different tick can result in a variation of the bacteria that results is a somewhat different disease presentation.

I would strongly encourage you to get the IGeneX Western Blot for your husband (It is worth it!)  and find a LLMD, a Lyme Literate MD who is a member of ILADS.
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551343_tn?1350880995
I totally concur with your post. x
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