Update....getting closer to a DX!!

[grandmalaurie59]

Hello everyone! It is me again....you know the one who has MS, then doesn't, then does, then doesn't...

As I just told Pastor Dan....I LOVE the Cleveland Clinic!  They are NOT stopping until they figure this out.....and I have to admit it is getting more and more interesting as each day passes!

Have any of you ever watched the TV show 'House' when it was on?? Well, I feel like one of his patients...everyday a new symptom for them to figure out!! Makes for an exciting show, but NOT in real life!! :(

Anyway, just got my results on my bone marrow biopsy. I DON'T have Mastocytosis. The hematologist was even surprised due to my elevated tryptase blood tests and symptoms. She referred me to a allergist/immunologist AND get this, she wants me to go back to my MS specialist!!

I am currently on my 2nd round of 40mg of prednisone so I can function without horrific itchy rashes and debilitating fatigue, pain, weird sensations, dizziness ect and feeling like I am going to pass out.... Plus I am also taking STRONG antihistamines, I have epi-pens now and have to take Zantac for SEVERE reflux. Plus lets not forget my MS symptoms.....lots and lots of fun.

After MUCH research into histamine intolerance and mastocytosis I came across this interesting article. (posted below) Which is giving ME hope.**** It mentions MS.**** Since I don't have brain lesions (only brainstem) and now a negative spinal tap. Maybe this is the answer for me.....Low histamine diet. I have already been gluten free. I am also staying away from lots of foods that.....all of a sudden...will send me into an attack!! (Interestingly my MS symptoms get worse too!!)

I see the allergist/immunologist on Thurs. at the Cleveland Clinic. I have NEVER had so many tests in my LIFE. they are very thorough and move fast!  

Here is the article: http://healthypixels.com/?p=1044

I will let you know what the allergist says.....by the way histamine intolerance does NOT mean you have allergies. Even though you get 'allergic' reactions to things..

Hugs to all,
Laurie :)

[supermum_ms]

Hey Laurie,

I've had a few sx's that have been one for the books, never seen before by specialists and they too are sure they will work it out, but lol at the end of the day, they end up blaming my peskie lesions and start telling me they think its probably MS lol and there i sit. You know they say MS is a MySterious condition but i've still got my fingers crossed that they work it out so you can get off the blasted roller coaster!!

Hugs..............JJ

[grandmalaurie59]

Thanks everyone!!  

Laura, I am seriously going to look into the show "Mystery Diagnosis",  if they can definitely figure out what is going on with me!! LOL!

I also gave my Doctor a huge incentive to find out what is wrong with me....I told him I would make him a pan of my famous homemade Lasagna for him and his family....He seemed real excited about my promise!! :)

Thank you Sarah....I told you I was not giving up....I have all the doctors and all the tests to prove it!!  :D

I will let you all know when I find out any more news or results of my tests!! Well, at least it seems like I am keeping you all entertained!!  :)

Hugs to all,

Laurie  :)

PS....what I think is so funny.....each doctor I went to seemed confident that THEY were the one who was going to figure out my Mystery Illness.

[Maracamama]

Such a tangled web to unweave.  Sounds like you're in good hands though.

Keep posting updates.  I'm still waiting for your TV show :)

Laura

[SarahL2491]

golly but you have run the gauntlet for chasing a dx of any kind!
you win the prize!

hoping these docs can narrow it down for you..........egads you have been thru enough already

crossing my fingers for you.......c u in the cave!

[Lulu54]

it sounds promising - I hope this all gives up some answers because you've lingered long enough.  hugs, Laura

[grandmalaurie59]

Hi everyone....

1. My appointment went GREAT!!!!  :D I loved him!!!

2. I am feeling HORRIBLE with out my prednisone!!!  :(

Dr Kaufman the allergist/immunologist, after hearing my symptoms and history AND seeing my rash. (I have a picture on my phone).....he is convinced allergies are NOT causing my problems/symptoms. He is convinced it is immune related because of my symptoms AND NEED for high dose prednisone just to function.

He thinks I have Celiacs disease. AND or an autoimmune disease.

I am NOT saying I am giving up on Mastocytosis..... My BIGGEST question now is WHAT are these Flushing attacks??....

Anyway, Celiacs disease CAN cause all kinds of symptoms including neuro symptoms. I WAS tested last October for Celiacs , test was negative.....but the test was Free....so, the doc didn't follow up....I have an IGA deficiency so that guarantees a negative result! More/different testing needs to be done.

Dr Kaufman is testing my blood my different ways for Celiacs including a Genetic test. The Genetic test will tell what percentage I would have according to my genes of having celiacs.....If I have a 20% chance genetically, then he can rule it out if the other tests come back negative too. On the other hand if I have a HIGH percentage genetically of getting celiacs EVEN if other tests are negative....then I DO have Celiacs....This IGA deficiency I have can 'mess up' a lot of different tests by giving false negatives including Sed Rate. My sed rate is VERY low .... like 1-4. Even Dr Kaufman thinks that it weird, do to the fact that my C-Reactive protein is always high. And I am definitely full of inflammation....hense the need for prednisone!

He is also testing me for Sjogrens, Hashimotos, IGE for allergies and peptic ulcers. Also the hematologist gave me ONE more blood test to take....for a rare disease called Porphyria.

Dr Kaufman wants me to wait a week, then go get all the blood work done to ensure the prednisone is out of my body. I then wait two more weeks to see him. My follow-up appointment is on August 29th.

I did make an appointment with my MS doctor Sept 17th.....so if by then They can't come up with an answer/answers of what is going on .....back to my MS doc I go!

Laurie  :)

[grandmalaurie59]

Sorry, I thought she 'cured' herself from MS. I also didn't realize she is still taking a DMD.

I think diet is going to help me tremendously! I eat well, but I am finding out most of my 'healthy' foods are high in histamine. :(

The diet will NOT get rid of my problem....just help it. I have been talking to people on another site who have Mast Cell Disorders. Most have negative Bone Marrow AND tryptase levels and still have been dx with Mast Cell disease.

I think I am on the right track with Mast Cell disease. These people also have MS like symptoms too...and some even have brain lesions!!! With diet and medication they are doing MUCH better.

Unfortunately MOST doctors don't know how to treat MCAD. I hope my upcoming visit with the allergist/immunologist goes well. It would be nice to get my life back....I still would have to avoid triggers, foods, sun, stress, exercise, heat....ect....but at least I will know HOW to live and stop guessing! :)

Laurie :)

[Lulu54]

I sure hope you get some answers.  The histamine free diet sounds worth a try.  

Just a note about Dr. Wahls - she has since explained she still has MS, she didn't cure her MS .  I think I have also heard her say in an interview that she is still treating her MS with drugs, but right now I can't find that reference.Even so, it appears that she has benefited greatly from the diet she developed.

[grandmalaurie59]

Minding Your Mitochondria: Dr. Terry Wahls at TEDxIowaCity        

http://www.youtube.com/watch?v=KLjgBLwH3Wc


This is a video of a Doctor who cured herself of SPMS...by diet and supplements....she talks about all diseases. If you haven't heard of her the video is very informative and interesting!!!

[supermum_ms]

Hey Laurie,

I have battled many a dr over the years on the subject of chemicals, additives, preservatives etc negatively effecting our youngest, lol long before science started backing up  what we knew to be true for 'him'.  Seeing to believe or one wont hurt mentality (teachers, family, friends mothers etc) made sure we dealt with many slip ups, hmm (lucky in a way) considering 'those' slip ups generally created a visual reaction in him, that they tended to only do it once. Hard to disbelieve the red welts or blisters forming all over the kid you slipped a brightly coloured, preservative and flavoured lollie (sweet, candy) too.

Finding alternative foods back then was pretty difficult, home made like grandma use to make and home grown was our only choice because food labels didn't identify 'exactly' what was in it. Over here the labelling laws have changed a few times which makes life easier and it looks like they are going after the 'fresh' food industry now, to make unprocessed foods more transparent.

Did you know that some 'fresh' fruit eg apples are sometimes 2 years old by the time they leave supermarket cold storage and hit the shelves? Kind of gives a new meaning to the word 'fresh' lol None processed meat sold in sealed packages, (easy to view disposable tubs, clear film on top) usually sold in supermarkets and are mostly sealed with a preservative gas, its not the meat thats the problem but how its packaged. It starts getting real scary, when you know what's been found in imported products from 'some' countries where the laws are quite different or none existent, ewww and ugg.

I truly understand this ideology but if its the actual 'cause' of everything that's happened to you, well I honestly don't understand the hard evidence side of things that you've got. Making everything worse I can understand but causation of brain stem damage and elevated tryptase etc is a lot harder for me to follow, so I too am eager to find out more!

HUGS.........JJ    

(fingers crossed!)
  

[PastorDan]

Waiting with baited breath!

(What in the world does that expression mean?  Does it mean my breath smells like stuff a fish would eat?)

[grandmalaurie59]

Thanks everyone!!

Poppy...a histamine free diet IS going to be extremely hard!! But it is either that or I watch myself slowly die. This is torture for a 100% Italian who LOVES to cook!! And eat. ;)

Histamine free DOESN'T stop at food....It could and usually does include chemicals, scents, the sun, cold, lotions ect. ect. ect.

Again....when you get sick enough you WILL try anything. I AM at that point.

We ALL know autoimmune diseases of any kind is the body going awry .....
We ALL know that MS and other diseases are increasing at alarming rates....
We also ALL know that the food we eat today is NOT the same food are parents ate in the 50's and 60's. Between all the additives, preservatives, chemicals, processing, genetically altered wheat....and the list goes on. Plus we are getting fruits and veggies from all over the world...How do they keep it fresh? What do the use control pests?

Our bodies are designed to heal themselves....I am just hoping it is not to late to reverse the damage already done.... Like MS those 'scars' in the brain and spinal cord is damage that can't be taken back.....The most you can do is to try to prevent it from getting worse.

I will let you all know how it goes!! :D

Yes, Laura...mystery diagnosis!! My hope is that WHATEVER is wrong with me, I will be able to help others when I get answers. I sure do know enough people now who have seen/witnessed/heard how SICK I have become! To me getting off meds and curing my self with diet is an easy way out!!  :D

Laurie  :)

Common sense tells me I'm on the right track....I just hope I can reverse the damage before it DOES become permanent!!

[Corriel]

I am so excited for you! I hope these folks can figure things out. :-)

Hugs,
Corrie

[Maracamama]

They do need to make a show on your diagnosis (I think there used to be one called mystery diagnosis), that would be for you.

I'm glad to hear that they are still trying to figure you out.  I wish I was close enough to this clinic.  I'm not sure what you're going to be eating though.  Sounds like you're going to have to be vegan and gluten free and possibly everything else free too.  Yikes.

I can't wait to fun out what these doctors discover is wrong with you and hope it is soon for your sake.

Laura

[SarahL2491]

hang in there, you will figure it out, and perhaps enlighten medical science along the way!

[Poppy7402]

If you go on a low histamine diet, what do you eat??!!!   Seems like just about every food is on the list of things that can cause a histamine reaction.

I'm now in a similar boat to you.  Told yes it's MS awhile ago and now told, no it's probably not, but Neuro doesn't know what it is.

My original suspicion until I was basically told that what I was suggesting doesn't exist, was neurological Coeliac disease (gluten ataxia).  With many of my symptoms either clearing up or drastically improving after completely ditching gluten, I'm now about 90% sure I was right at the beginning.  Pity I had to go through seven months of torture to find out what I already knew.

For anyone in limbo and getting nowhere, gluten ataxia is well worth investigating as the symptoms of GA and MS are identical, except for the location of the brain lesions, and of course GA will improve or halt progression with a gluten free diet.

Poppy