[color=#ff0000]Archived from Original Forum   -   lisathuler  author[/color


Mike, I put the first half of my answer over to the other post  - here, just to make it easier to find!
http://mastcelldisorders.lefora.com/2010/08/17/doc-said-blood-is-norm/#post13

Mike, as to my knowing so much more, please, I'm a patient just like you are and trying to find out the answers to my problems too!  I think the only thing that has perhaps given me an edge is that although my doctors are doctors, they know absolutely NOTHING about masto, they are learning with me.  I do have a masto specialist but I went through a bunch of specialists who also knew NOTHING about masto before I finally, after a year, found my doctor!!  By that time, I'd already gotten well entrenched in the masto study!  You see Mike, I had no choice, I HAD to have answers because of my deadly aortic aneurysm!  I'm a hereditary case of this and they are discovering that we are more like Marfan patients than they'd once thought and my life was in danger.  It PUSHED me to have to find the answers even though my doctors couldn't!  So, it isn't that I'm any expert - by NO means.  I've just been put through the INTENSIVE MEDICAL SCHOOL FOR MASTOCYTOSIS!   It literally has SAVED MY LIFE!

Now, Mike, lets talk about that pain of yours!!!    The more I am reading and hearing about cases like yours and Peters and that of others with masto and this poorly understood and poorly studied pain, the more I'm seeing that there MUST be some kind of connection!!!    Its like why do so many of us have Intersticial Cystitis?   Yet, can we call those patients with only IC as masto patients even though they don't have any masto symptoms other than  IC?!   THIS is where we end up running into trouble with our disease and our symptoms!  And this is where we also get our doctors rolling their eyes at our wild suspicions!!!!     I kind of relate it to working with my 12 year old son when he wants to philosophy and explain something.  The theories he comes up with are so impossible because he doesn't understand the mechanisms behind it.  Yet, there are times that because he's not imprisoned by a set of rules, he comes up with some pretty amazing conclusions!   I've done this in my own case!   I've raised suspicions that my own doctors rolled their eyes, including my masto specialist, but after Dr. Castells confirmed them, nobody could deny that what I understood about my own body and had studied about the disease and thereby formed conclusions ended up revealing the truth of my situation!

Mike although they have not studied the nervous system and how masto interacts and is involved in it, it doesn't mean it isnt'!!  The discussion with Peter about the fibromaylagia case with spindle shaped mast cells is very, very interesting!  My own case where they have seen that the direct involvement of the mast cells with aortic anerusysm is impressive and that one of the mast cells and the fat cells and the supposed link to obesity and possblely diabetes, is INCREDIBLE!!    The fact that the researchers are now finally beginning to admit that their viewpoints for studying this cell may have been to narrow says a tremendous amount!!   Mike, you KNOW your body and you KNOW how it's being affected!  The researchers of this disease, although they know the disease and study it do not have the disease themselves so they don't have this personal experience to help them understand it even more!!. They do know that there is so much that they still don't know and the fact that they are openly admitting this by now holding this new WHO Consensus meeting officially recognizing other forms of mast cells disorders shows that they don't know as much as they thought they did and that there's a whole world yet undiscovered with MCs involved!!  

We patients can't wait upon them for all of our answers!   There are times we must push ahead and find them for ourselves!  Sometimes, like with me, our very lifes depend upon it!    Mike, it's very possible I would be here right now if I hadn't pushed HARD for my answers!  Only God knows that one!

One last thing.  Mike, I would suggest to you to have some autoimmune testing done!  If they may end up diagnosing something, but if you come up with vague results like Heather and I, not being able to diagnose any specific disease, you would definitely have a case to study!  It would prove that a UP patient could also be autoimmune!  I'd bet you anything that Dr. Castells and Dr. Schwartz would be very iterested in your case then!   To the best of my knowledge in talking with others who are autoimmune - we don't have spots!  We're purely systemic!   So let me suggest this to  you!!

Lisa

[color=#ff0000]Archived from Original Forum   -   lisathuler   author[/color




Hey Schatzi!  How GREAT that your doctor actually works with Dr. Castells and Akin!   You could not have a better situation!!   I'm JEALOUS!     And it's WONDERFUL that he's so attentive to you!  That's how it should be!   We all have TOO many issues to be left on our own!!   I'm sure my doctors wonder how one patient can generate SO MANY issues!!!

Glad to have you aboard, Schatzi!   The more the merrier!!!!    And for some of us, like me, this is my ONLY contact with masto patients, so I've so greatly benefitted by being here too!!    I'm continually clicking my heals three times!!  There's no place like Home!

Lisa

[color=#ff0000]Archived from Original Forum   -   shatzi    author[/color



Good morning folks,
The bone and muscle pain is quite debilitating.  I used to be very athletic.  Now if I walk 1/4 mile I am lucky.  But it is best to try and maintain some level of fitness, as deconditioning can also make you feel achey.  But its hard as everyday is so different.  Last night I was rocking back and forth in pain and today its gone.  I seem to see a corolation between a flare up and then I have a pain episode.  It can last weeks if my pool is not available(winter).

one of my saving graces is swimming.  It is my secret weapon on pain.  it keeps the pain away for days.  it also keeps you cool so there is no flushing.  I also use dog therapy.  It has been proven that patting a pet can lower pain and calm you.  It lowers blood pressure and anxiety.  I also use comedy.  There is no way I can not laugh when hubby pops in will ferrell's "anchor man", or monty python!

I am lucky as I live outside boston area and have masto specialists near by.  I will be moving to colorado this year, we have a home there as well.  I will be selling my home in new england  as I can no longer care for the gardens and large home.  We have no kids so we can go wherever.  I do not think I will be able to continuing working.  I had high hopes but I think I have been hiding my head in sand and need to face the truth.  but I cannot lose all my income at this time.  too scary!

I saw it mentioned that you can apply for disability even if you are still working?  I am down to part time now.  Bummer!  Its not just the loss of money but the feeling that you have crossed a mental bridge that means you are really sick.  

I must say that I feel mentally better since I joined this group.  I had searched and could'nt seem to find a like minded group.

I just keep my favorite fortune cookie quote in mind "it is not the destination but who you become along your journey that is most important"

peace,
schatzi

Archived from Original Forum   -  riverwn2 author


love that line shatzi!
Im sorry you are having those changes and the sadness from it but Im glad youre doing what is right for YOU. Yes, you can apply for disability as long as you can show the disorder is making a substantial change in your work ability and income from it. There is a whole thread where we talked about it--what to do in what order. If you can find that thread I think it might help you.
Thinking of you,
Ramona

Archived from Original Forum   -  schatzi author



I agree  about the journey.  I consider myself very hearty.  It takes alot to deflate my balloon.  But this disease has brought me to places I never thought possible.  Just when I think hey it could not get worse, it shows me the ugly truth.  But overall I feel that I am always where I need to be for a reason.  
I am on cloud nine as after 2 weeks on gastrocrom, I can eat!  This drug does not "wear off"  so fingers crossed.  I spoke with masto doc today, he still feels uncomfortable labeling this yet, and tends to go back and forth, but we both agree that the response to the drugs most likely points to MCAD. tryptase is normal x1.  He stated if the drugs are working then who cares if we do not fit the criteria.  Diagnostic criteria is very loosely interpreted in the medical field.  In general, the closer you are to a large teaching or university hospital, the more serious they are about the criteria.  
Mike, I agree about the side effects of the above mentioned drugs, there can be a wide range of responses.  Neurontin is a seizure drug that has  been labled for neuropathic pain use, but it is not tolorated by many.  I have such empathy for anyone who has this pain.  It is the worst experience ever.  And we all know about the blank stare you get if you mention uncontrolled pain at doctors visits.  Mike, what were the results of your EMG?    
This is a really warm group of people, some of the other sites may have either younger folks or more angst but I liked the positive vibe here.  this is my first time blogging ever. its fun.   I will have to check out some of the other threads such as disability, I go back and forth with this.  and since I do not have 100% firm DX, who knows if it will even be possible. thankd again to all.
peace,
schatzi

Archived from Original Forum  - mikev author  




schatzi:
I too get stiff after a mild workout or sitting in same place too long like at work on the computer but I attirbute to getting old. Just turned 64.I don't think my nerves have been damaged either in fact both nerve conduction test came back with the same result. Something was interfering with nerves performing correctly but like my last neuro doc said. It was something posing like neuropathy but really just the opposite too much going on with the nerves not neuropathy. She was the one who ran all the blood test on my like lupus when I didn't respond to any of the normal neuro drugs. In fact she was very smart. Out of the blue she said I don't know what it is but I know stress effects it negatively. At the time I thought she was buzzing me off as a nut case but she was smart enough to tell me the truth and send me to continue my search for a diagnosis not continue the neuro avenue. I think It's great that gastrocrom is working for you. Mine is so little stomach related but gastrocrom has helped my skin. I just need the ultram some to keep pain manageable especially stressful times like at work. Good part about Ultram no loopiness. Have not thought about disability. Got a daughter with RA to take care of. Working to her get her disabled but at 32 very difficult. On the gastrocrom just make sure you take it like they say 4 times a day. It's a major pain planning your whole life around what time to take you drugs, but remembering what it was like without them makes me stay on schedule. My tryptase unlike yours is elevated but not real high in the 16-20 range, which the more I study is the norm for a leaker versus a shocker. I'm glad you found the group as well, one of the first people I could talk neurology to & I had 1 1/2 year experience with it. Contined good luck & keep up the fight, although from just the few posting that you have done, as I know you will.
MikeV

Archived from original forum -  mikev author



Hi schatzi:
It always amazes me just when I think my issues are long & growing considering the mold here has been hovering around 20,000 for a month & my sinuses went crazy that I read stories like yours. Gastrocrom like I said before was a good addition to my meds but doesn't stop the flares just like you mentioned yours today. That's why I take ultram on those days & the stress days. I can see with all the nerve damage you have had that maybe lyrica or cimbalta would be an answer. The only problem is whether they release histamines in your body. I only tried those for about a month each when I was in the stage of not knowing what was going on so it's not fair for me to judge them accurately. Each med I tried including prednisone worked for about a week or so till symptoms came back during that 2 year period of looking for the problem. Due to my age & symptoms, neuropathy was thought at first to be the problem even though I was very healthy & still am healthy except for masto. So don't give up on gastrocrom it takes a while for it to really work with your system but just remember it is only a part of the package needed. & even with the meds our bodies find ways to take us for a ride.
May you feel better soon.
MikeV

Archived from original forum  -   riverwn2 author




Hi Shatzi!
I can only give you my opinion and experience and I dont know what thats worth LOL.. but I have the same thing--if I stand or walk for more than 2 minutes I feel Im being tortured. Im in so much pain... Its sudden and its debilitating. I can say its affected my life to the point where I only worked 3 days last month (and I cheated and took prednisone for 2 of those or I wouldnt have made but one).
Especially standing in line at a store is excrutiating. I often ask my hubby or a relative to pay for my purchases for me while I go sit in the car. I used to LOVE grocery shopping--I would smell EVERYTHING and wander the isles making creative meals in my mind. Now I use a zippy cart--which embarrasses me, but I cant make it any other way, to the end of my shopping list. I go once a month now and dread it.
Im trying different things to stop or alleviate it but nothing works well enoiugh yet. I will certainly let you know if I find anything that helps.
Hugs,
Ramona