Differnt symptoms and no answer yet

[Arni87]

My husband is 28 and over his health issues over the past year has really affected our life. We have visited different doctors, done so many tests and there is still no answer. His problems are like puzzle pieces which no one has found a connection for them yet.

He has had hyper and hypo thyroid before which was OK for 2-3 yrs. The problems started that by his unwanted weight loss(10-15 pounds) over some months, his feeling of unbalance or disequilibrium, discomfort in his hand, arm, weakness in his legs, vision problems while driving at high speed and stomachache.

They checked his thyroid and it was OK. They did endoscopy, colonoscopy, and X-rays. They found acid reflux, and a small polyp which was removed. He started using Acid-reflux pills which just finished.

For his neurological problems he visited several neurologists and an ENT. All of them said his physical test were good.
He did 2 MRIs, BAER, tilt table test and nothing was shown there. Lots of blood test were done. The only thing that they could find was low B-12 for which he started nasal supplement for a while. The doctor checked it later and it got ok.
The ENG came back abnormal with spontaneous pendular nystagmus. Some of the doctors said ENG does not show anything. Some said this is sign of demylinating disease. The ENT sent him to vestibular physical therapy. There they did not see anything and dismissed him after a few sessions.
He also did the swallow study which showed dysphagia in the upper part which doctors told us might be due to neurological problems.
After visiting the neurologist for the last time, about two month ago, he said that he can not see anything more. In response to my request for another test, he had told my husband that he could do spinal tap. As I was afraid of this test, he has not done it yet.

At the same time, his thyroid started hyper and after taking medications got hypo and right now ok. He has gained all his weight back now. He is supposed to see the the thyroid specialist soon for follow up. We just recognized that in the Ct scan he had done three years ago was written that he might have grave's disease. Two primary care doctors had seen it and no one ever mentioned it to us.

During the past three month, he has had respiratory problems specially at the middle of the night with hard time breathing, coughing for which we have gone to ER a few times. It even happened when he was so stressed.

A month ago, our primary care doctor checked his ANA and it had become positive for which he went to rrheumatologist and he did the blood tests and nothing was found.

We really do not know what to do. He is so tired of all these tests and no answer. It has terribly affected our life so that I feel that we are somehow getting depressed. I appreciate your comments.
We sometimes read MS symptoms and see that so many of them are very similar and get frustrated however all doctors said no.

Thanks.

[COBOB]

"Technique: Pre-infusion axial and sagittal T1, coronal FLAIR,    axial T2,   axial diffusion-weighted images (B-0 and B-1000) with ADC and EDC maps obtained from axial data.  Post-infusion axial Tland fat-suppressed coronal T1-weighted images through the brain."

These are the MRI sequences that were obtained:

Pre-Contrast
T1 Axial
T1 Sagital
Fluid Attenuated Inversion Recovery Coronal
T2 Axial Diffusion Weighted with Apparent Diffusion Coefficient and Estimated Diffusion Coefficient

Post Contrast: (Since GAD contrast only enhances on T1 weighted Sequences)
T1 Axial
T1 Fat Suppressed Coronal

After looking over the posts, I think you should look for a teaching hospital that has a Neuroendocrinologist.  I'm assuming from what I have read that the MRI's were reported as clear for white matter lesions, but I think a neuroendocrinologist or neuroradiologist may need to closely examine the pituitary and sella turcica.  That is just a hunch, and I'm an engineer, not a doctor.

I know that Empty Stella Syndrome can be associated with Hyperthyriodism and ACTH insufficiency that can effect the Adrenal Glands and cause cascading endocrine and neurologic problems.  That is why I'm suggesting that you seek out a neuroendocrinologist.  This may be one of those cases that a very specific specialist is required to unwind a complex presentation of symptoms.

Bob

[Sumanadevii]

That is a question that Cobob can answer or someone that has been on the boards longer than I have...Sorry I have no understanding of the results.  

I do know this...if MS is suspect, he needs a 3t MRI of his spine.  In my case, I have one little tiny lesion on my brain.  The rest are on my brain stem and spine.  

In all the eight years I was told I had a little of this or a little of that.  I had gone to my family doctor then to an internist then I began visiting specialists.  The vascular surgeon called it Raynard's Syndrome but couldn't explain my foot not working.  Why couldn't I lift it fast enough.  Why was I falling off ladders?  (I was a display artist by trade and had been on ladders all my life)...Finally I landed in a neuro's office.  His diagnosis was a pinched nerve in my neck.  I still remember asking, "Are you positive...absolutely positive that it would cause these problems?"..By this time I was using a wheelchair for any distance.  Somehow he convinced both me and my husband that yes it was.  I had searched five years before him and now sat with him another three and a half years.  

During my years with him, I lost control of my bladder.  I had problems with my vision.  The fatigue was horrible.  But I had been so beaten down, I just accepted it.  I blamed myself that somehow I had allowed myself to get this out of shape,.  I woke one day my right arm not working.  When it was brought to his attention, he just shook it off and said the only thing another physician would do was give me Vitamin D.  That is the day that anger boiled and I began a new search for help.  Four months later I would be diagnosed and in treatment.

Without being crude, I can choke on my own spit.  I need things to thicken my drinks and most all foods are puree.  Rather than use a thickening agent, I prefer to use strained baby foods ...fruits to thicken juices.  I eat a lot of baby cereal warm with a lot of milk....Mashed potatoes are a base to add a lot of gravy with liquid...So I just have found other ways.  Eggnog is a favorite right now....

Yes I had a spinal tap and it showed eight 0bands.  The neuro only ran it for more documentation.  Having lesions on your spine is usually a good indicator of MS as they are not usually caused by anything else.

I wish you well in your search.  As always I remind you please not to waste time.  Damage can be done to his body during the wait.  Find an MS specialist with a major hospital.

Sumana

[Arni87]

By the way, I checked his test results, it says: "Technique: Pre-infusion axial and sagittal T1, coronal FLAIR,    axial T2,   axial diffusion-weighted images (B-0 and B-1000) with ADC and EDC maps obtained from axial data.  Post-infusion axial Tland fat-suppressed coronal T1-weighted images through the brain.
How do you see it?

[Arni87]

Thanks, we will.
So all these eight years no one ever told you anything in particular? I am sorry hearing that.
You know his swallowing problem is not like that the he feels something is sticking in, his swallow study showed that he has more problem with liquids so he is taking even his pills with apple sauce.
Our doctor never asked for spine MRI. Did you do the spinal tap?

[Sumanadevii]

Have him call Patient Records or the Radiology Department and ask what size was used.

When I am having a hard time swallowing I can usually nurse myself with soft foods...applesauce, puddings, yougart, etc.  Sometimes I end up on Ensre.  I haven't had to use a feeding tube yet.  

I was dignozed this past June but it was an eight year battle.  Yes, I had MRI's on the 1.5 and the lesions on my spine and brain stem did not show.  I had no idea a different machine would have shown them.

Everyone's MS shows her ugly face in it's own way.  Truly mine started as just a horrible backache that never went home.  The breathing, swallowing and useless arm was what sent me screaming to find another neuro.  Luckily it was at a major hospital (trauma center).  I waited four months to see this neuro.  She had the MRI taken the next day of my spine and brain.  The following day I was in treatment.  She wasted no time.  The problem with waiting to see what develops is the damage that can be done to his body while being the good patient.  Get a good dose of anger and start searching!!!!

[Arni87]

Thanks for your response. We live in Chicago. The hospital does not seem to be small to me. I am not sure about their equipments. What do you mean by a 3t MRI.How could we know if the equipments are good? I have suggested him to go for a MS specialist for which we need to get a referral from our family doctor.
How are your swallowing problems like?
Have you been diagnosed with MS? how did yours start for you?

[Sumanadevii]

My question is...were the MRI's done on a 3t?  Some of the symptoms your husband is suffering are very much like mine.  I have lesions on my brainstem that cause the breathing problem...waking breathless.  There are times during waking hours I feel like someone has put a blanket over my head.   I also have the swallowing problems and along with it comes the upset stomach.  Has he seen an MS specialist at a major hospital?  My first neuro was with a small hospital with outdated equipment and the lesions on my spine and brain stem were missed....Just my two cents.

[Arni87]

Thanks for your response. But every day we see new symptoms such as tinnitus, I am just curious to know if the brain MRI and BAER have been ok, does it mean that there is no MS or not? What other diseases might have caused these?

[RedFlame]

This is so difficult to go through all the tests and all that you have had now for a few years. It sounds like you have made some headway though with the thyroid and b12.  As far as the other symptoms, it can take years before a person is diagnosed properly.  

As far as the thyroid, it will take some time to find the right level.  I have had hypothryroidism for 20 years and it's always in a state of flux.  

I hope you hang around and get some support here, we welcome you here!

Red