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http://mastcelldisorders.wallack.us/yabb/YaBB.pl START HERE! Tips for identifying your triggers and learning how to get better >> Tips for identifying triggers and how to get better >> Deborah's tips! Bone marrow biopsy http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1293300142 Message started by DeborahW, Founder on 12/25/10 at 06:02:22

Title: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 06:02:22

The only true way to diagnose masto is through a bone marrow biopsy (BMB). It is not painful if it is done at a referral center by a very experienced person. Pretty much, you will only find that at the locations where the researchers are. It is imperative not to waste your time having it done at a local doctor's facility. The reason is that they will not have the highly sensitive technology to analyze it correctly, and the worst part is that they won't realize that fact. Reports have come in of people getting false readings and having great pain because they went to their local doc instead of one of the few referral centers in the country (NIH, Univ of Mi, etc). Many people may discover that their BMB is negative for masto. At that point, they are probably going to be labeled with IA (Idiopathic Anaphylaxis). This is what I have recently been diagnosed with. My BMB was normal, however, I have identical symptoms and triggers as masto and I react beautifully to the same meds that masto people take. A task force has just been formed by the American Academy of Allergy, Asthma, & Immunology. Dr. Akin is part of this task force and I believe will be researching the place of IA and other mast cell activation diseases. IA is tricky in that they don't know if the excessive histamine release is caused by mast cells, basophils, or something else. They are going to include patients just like with IA in their investigation. Either way, those patients with Masto, MCAD, or IA are all in the same boat with the same triggers and symptoms. We have great researchers working to help us, and the researchers know how to at least alleviate many of the symptoms.

Here is my description of my bone marrow biopsy (BMB) at Univ of Michigan with Dr. Akin and his team. (Dr. Akin was at this location before he moved to Boston):

Well, I arrived 15 minutes before the procedure as directed. At Univ of Mich they send you to the Cancer and Geriatrics Infusion unit for your BMB. So, I checked in there (with my husband) and had a seat to wait. Dr. Akin arrived and sat and chatted in the waiting room with us until they were ready to take me back. I can't tell you how much better that made me feel -- kind of like having your own security blanket with you! When they called my name, Dr. Akin and I walked back to a relatively small room. There 2 nurses bustled about and Dr. Akin and I had a seat and waited for Irene (the person he has do all of his patient's BMBs) to arrive.

Now, it is helpful to know that you should wear something with loose fitting pants (like a workout suit), because you don't change into a gown or anything like that. All they do is have you lie stomach down on a "bed" and they just scoot your waistband down a bit. Simple.

Before the procedure, Dr. Akin requested that they take my blood pressure to get a baseline. Mine was nice and HIGH (155/90) -- grimace! I explained that I generally have a low one, always under 117/75. But Dr. Akin laughed and said that in my case he would rather it be high than too low (for obvious anaphylactic reasons).

Irene is just as good as Dr. Akin says she is. Every step of the way, she told me what she was going to do and what to expect to feel. She was very careful to always check to make sure that the area was numb before proceeding. The first thing she did was feel around on the back of my hipbone to determine if she would use the location just off center to the left or the right. Then she sterilized it and draped a cover over everything but the small area that she would be using as the BMB site. She told me that the first thing she would do was give me a shot of lidocaine to numb the skin, and that I would feel a prick and then a burning. Yes, it was exactly like what she described. She immediately said that she would now numb the bone. I think she said that I might feel something there...but I felt nothing.

First she took the aspirate sample. I cannot tell you exactly how, because I did not look (although I could easily have seen if I wanted to). All I know is that they told me that would be the more uncomfortable part. Happily, I had no pain or discomfort at all. It seemed to take forever, but in reality, I bet that it was 5 minutes! Then it was over and she said it was time to get the biopsy. She first started touching the numbed bone lightly (with the needle I suppose), and asking me if I felt a sharp pain anywhere. Unfortunately, I actually did feel it. Bummer!! So, then she kept trying different places, searching for a place that was completely numbed by the lidocaine. She couldn't find any areas, though -- everywhere she touched I felt a tiny sharp pain. It was not enough to cause me great distress, because it was quick and then she would stop. For me, I was not too thrilled because as I was feeling this series of quick pains, I was thinking to myself that if she went ahead with it at that very moment, I would surely have excruciating pain. So, in other words, my fears started to get the best of me for a few seconds and I started to feel a bit ill. Irene makes sure, though, that you have no pain, so she immediately said that we would wait and she would give me extra lidocaine in the bone. Well, that did the job, and she was able to get the biopsy with me feeling nothing.

They all said that they got a terrific biopsy and aspirate sample, so that was good. After it was over, they put a pressure dressing on it and had me lie on my back for 10 or 15 minutes to put pressure on the location to stop any bleeding. Everyone except for Dr. Akin cleared out pretty quickly. He grabbed a chair, pulled it over and chatted with me until I could get up. Any of you who are going there for your BMB with Dr. Akin can expect the utmost compassion from him. He fully knew how apprehensive I was about this, so he stayed the whole time and walked me back out to my husband when it was all over.

Did I have any pain afterwards? Not really! That afternoon and evening I felt like you do when you have the flu and your kidneys hurt. That was all. The next day I did not feel much pain at all; just some achiness occasionally. They told me I could take extra strength Tylenol for it.

So, there are the details. It was soooooooooo much better that I had hoped for, and if I had to do it again, I wouldn't hesitate (as long as I did it with Dr. Akin). So, anyone who is having one done soon, now you know what it is like.

Hope this narrative helps some of you to not be as frightened as I was. It's a piece of cake, so don't worry! Is is extremely important to tell them if you feel anything during the bmb. If you do feel sensation that is even slightly uncomfortable, tell them you need more anesthetic. This simple act makes the difference between having a painful bmb (because it will get that way without enough anesthetic) and one like mine.

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:14:24

(Archived message from suziekue - original forum)
This is a very interesting comment that you make about your BM biopsy. Mine was a breeze in that my doctors sedated me and it was done in the operating room. I trigger way to easily with medical procedures and so they sedate me to help avoid it. It's not that I get so very nervous, but that I'm just so reactive.

However, my biopsy returned negative. In fact, there were so very few mast cell seen that it was impressive, but this is most likely due to the fact that my hematologist was a total rookie with masto patients. She's never even heard of the disease before but I live in a small town and am the only patient in my town! It was only later, after I found info on this that I found out that it was totally wrong what she did! She took the marrow and stuck it on slides and this is what was sent to the lab! This was a HUGE NO NO and it's no wonder my slides came back with no mast cells on them! It's normal to find a few, but they saw only one or two, way too few to be a decent aspiration. I'll likely have to do it all over again, but that means also trying to find a doctor who can do it properly!! What a waste and the worst of it is is that even in spite of the proper protocols we used, I reacted for a week afterwards! I wish I'd known then what I know now!

09 October 2009 10:50 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:19:40

(Archived message from original forum)
Oh what a shame (and annoying, too!). A perfect example of the well-meaning but not knowledgeable doctor trying to help. Do you live in the US? If so, what part of the country? Perhaps someone can suggest a doctor near you.

__________________
Feel well!
Deborah
October 2009 07:28 AM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:21:34

(Archived message from csiii original forum)
Once again the rare disease syndrome rears its ugly head. Having a BMB done for me was not a pleasant experience. More like having dental work done with no anesthetic. After sending the sample to two labs, the first admitting that they were not able to run the proper tests, the second reported back that they could find no cancer. End of story. I had a full blown attack the night before, probably stress triggered. Since then I have been to a specialist at UCLA that wants to do another bone marrow himself, but my insurance company is blocking it. The specialist is sure that I have SM from studying my medical records from my allergist and the ER records, all 300 pages of them. That seems to be my biggest problem l fight now, my insurance company. I am semi maintaining with the cocktail of antihistamines and gastrocrom, but lately I have been very close to having a full blown attack. Liquid benadryl taken right away has forestalled the worst, but if an attack comes on in my sleep I fear that I will not wake up in time to stop it. And so it goes.

My best to all.
Dale

__________________
December 2009 10:31 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:24:01

(Archived message from baman - original forum)
Hi Dale

I've had 3 BMB's and they were all totally painless. (and believe me, I'm the worst wuss)
I hate to think what they did to you!

Jan
20 December 2009 11:55 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:25:13

(Archived message from original forum)
At this point, what is the purpose of the bmb for you? All you really need is someone to figure out the right meds for you and perhaps to learn more how to avoid your triggers. Knowing if your bmb is positive or not will not make a difference, so I would tell them to take a hike and get to working on making you stable.

Have you gone to Mayo? That is close for you than Boston. I would do that right away so that you can get better and move past this. I know how scary that feeling is of not wanting to go to sleep. Felt those same concerns myself when I am having attacks.

Hugs!

__________________
Feel well!
Deborah
21 December 2009 12:15 AM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:26:05

(Archived message from clemsonash06 - original forum)
So glad I'm not the only one here with fears of going to sleep! I absolutely hate to lay down and fall asleep now, ever since I started having the lovely anaphylactic reactions last month. I've had so many horrible reactions since then and it truly makes me afraid to sleep because I worry I won't wake up in time to stop something horrible. I guess it comes with the territory. :( Having a heck of a time tonight too bc my BMB is tomorrow and I'm totally stressing it. Even had to resort to epi for a horrible reaction earlier in the day, but that was simply because I was stupid and decided I needed to try dairy just one more time and make sure I was actually reacting to it...good grief. So I REALLY don't want another reaction coming on...which just leads to more stress because I'm worrying about it. VICIOUS CIRCLE!!! How have you guys done this for so long???

17 October 2010 09:30 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:27:58

(Archived message from original forum)
I was undiagnosed for 10 years and just figured it out by acting like my own investigator. I became a detective and studied what bothered me so that I could avoid it. The more you educate yourself, the more control you will have and your fears will melt away. You just need to know what triggers you, what daily meds to take to prevent symptoms, and how to avoid those triggers. I am now very easygoing about it all, except that I don't fool around with my triggers. I used to be a basket case, though, when I didn't know what was wrong with me! (It works now for me! I haven't shocked since I started meds in 2004, and I have never had to use an epi pen. Probably should have had many before I was diagnosed, but no one knew I was shocking!)

__________________
Feel well!
Deborah

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:30:33

(Archived message from jysmith - original forum)
If you're having anxiety about sleeping, see if your doctor will prescribe something for the anxiety. Not having sufficient sleep puts stress on your body, and stress can trigger the reactions. Vicious cycle there.

As for the BMB, make sure you're pre-medicated for the anxiety an hour before the BMB. Also make sure they give you the H1 and H2 histamine blockers an hour before the procedure. They didn't get the order for my meds in the procedure room, so I just ended up taking my own meds that I carry with me at all times. So, bring your meds with you.

My BMB was totally painless. Ask the doctor ahead of time to go really slowly and to stop or back off if you feel something. If he agrees to that, you'll have less stress. Also make sure they have everything they need IN the room in case you have an episode, and that will help you feel more secure, too. It only takes a few minutes for the actual procedure, and I have to say I had to take a lot of Ativan to get calm, but it really didn't hurt at all.

Good luck, and let us know how it goes. Joan

__________________
Take care, Joan
17 October 2010 11:00 PM

*******
"I try to take one day at a time, but sometimes several days attack me at once."

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:37:11

(Archived message from pdl - original forum)
I was dx by Dr Afrin at MUSC after having an endoscopy done and found an increased cd117 of 30 mast cells in the intestines. I have hives, migraines, syncope, constant rocking feeling, vertigo, major fatigue and more. Dr Afrin started me on Aspirin 1/2 dose 81mg pill and then double the dose every two days. When I taken Benedryl or Xyzal Claratin or anything like that previous to this diagnosis the vertigo/rocking feeling got so much worse, so he started me on Aspirin. I was doing ok at 1 pill of 81mg, I felt like the syncope had gotten better but now that I am up to 4 pills, I am getting a few episodes of syncope here and there. Any one else experience syncope like that when increasing the dose? Also, dramamine and stuff makes me feel worse also. Any suggestions for the fatigue and for the vertigo? Also, Dr Afrin said he was not going to do a bone marrow biopsy because the protocol for treatment would be the same either way. Is the endoscopy results good enough? Thanks for any help.

26 October 2010 10:12 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:38:32

(Archived message from starflower - original forum)
Hi pdl (is that what you'd like to be called?),

Welcome to the group!

Dr. Butterfield at the Mayo Clinic has done some research about using aspirin in people with high prostaglandin levels... in mast cell patients who can tolerate aspirin (many can't) it helps to reduce pain and flushing. Have you ever had your prostaglandin levels measured?? Although some people find it very helpful, aspirin is also a known mast cell degranulator! For one thing, it causes bleeding (thrombin, a protein in the coagulation cascade, is also a degranulator), especially in the stomach. The GI system is the last place that YOU want to be upsetting your mast cells.

Your doctor is generally right that the treatment is the same for mastocytosis and MCAD, but there are some important exceptions. If your baseline tryptase is high (in the hundreds, for example), you should definitely have the bone marrow biopsy to see if you have indolent, smouldering, or aggressive SM. Chances are good that you don't, but aggressive SM requires chemotherapy.

Some mast cell patients do have adverse reactions to certain types of antihistamines, especially the first-generation H1s like Benadryl and Atarax (which cross the blood-brain barrier). But... are you sure that the reactions you had were to the medication and not just a flare in your mast cell symptoms? Unless you're 100% positive, I would give another H1 a try... Zyrtec is safe, effective, and you don't need a prescription to buy it. ALSO, the two medications I would recommend most to you are Zantac (an H2 antihistamine, which reduces GI symptoms) and Gastrocrom (a mast cell stabilizer that works especially well in the GI system, but will also help with the vertigo, migraines, fatigue, etc...). From your description it sounds like the only thing you're taking is aspirin... which means that you're not only waaaaaaay under-medicated, but actually making things worse :(

I hope this is not too discouraging. You already know that you have an increased number of mast cells, so I think if you just get the right treatment you'll feel a lot better!!

Heather

__________________
Through the years I have learned
Some things worth the tellin'
And you'd be right in guessin'
That each and every lesson... they were hard won.

October 2010 06:36 AM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:42:40

(Archived message from original forum)
Hi and Welcome!!!

It's really interesting, I was just reading that article that Dr. Butterfield wrote on this form of mastocytosis!!! You know what it said, These patients do NOT respond to antihistamines!!! They respond best to aspirin and that's due to the high prostaglandins being released! I would strongly suggest that you write to Dr. Butterfield and ask him for a copy of this article of his. It will help you to understand what is happening inside of you. But it may also help your doctor as to how to medicate you. He may even speak with Dr. Butterfield to find out more information as to how to help you!!!

I'm glad you're here and I hope you'll stay because we all learn from one another! It's really so very interesting that in your case that you're a prostaglandin patient, but it totally explains why you're not responding to the antihistamines!

As to the fainting - I do a great deal of this too! I went through an episode today! I was out for almost 2 straight hours! Do you faint for prolonged periods or is it just briefly. I don't faint because of increasing meds or anything like that. I faint due to degranulation and it seems that when this happens my antihistamines don't help a whole lot. I'm about to be investigated for this situation so we're going to try to find out a means to help me more.

I hope this helps!

Lisa

http://www.ncbi.nlm.nih.gov/pubmed/18622141

Int Arch Allergy Immunol. 2008;147(4):338-43. Epub 2008 Jul 12.

Prevention of mast cell activation disorder-associated clinical sequelae of excessive prostaglandin D(2) production.
Butterfield JH, Weiler CR

Division of Allergic Diseases, Mayo Clinic, Rochester, Minn. 55905, USA. butterfield.joseph@mayo.edu

BACKGROUND: Patients with systemic mastocytosis have increased numbers of mast cells in the bone marrow and other organs, such as the liver, spleen, gastrointestinal tract and skin. Symptoms result from the local and remote effects of mediator release from mast cells and from the local effects of increased mast cell numbers in various organs. Patients with mast cell activation experience many of the same clinical symptoms as do patients with systemic mastocytosis from chronic or spontaneous release of mast cell mediators. We report 4 patients with mast cell activation symptoms from selective release of prostaglandin (PG) D(2), but not histamine, and their improvement with aspirin therapy.

CONCLUSIONS: These results suggest that mast cell activation may be manifested by a selective excessive release of PGD(2). These patients respond to administration of aspirin but not to antihistamines.
2008 S. Karger AG, Basel.

27 October 2010 09:21 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:52:47

(Archived message from pdl - original forum)
Hi Guys,
Thanks for the support. I think I am getting a small amount of relief from the aspirin. Just moved to 8 baby aspirin every 12 hours today. I bought the enteric coated yesterday and my stomach does not seem to hurt taking them now, thank goodness! I am still flushing though but my snycope is less. The syncope that I have is usually just a 20 second black out when I change from sitting to standing or laying to standing or sometimes if I over exert myself. Squatting is the worst though! I avoid it at all cost. The episodes are brief but very very often, almost every time I stand up or change position. I have also began a low histamine diet. I found that pizza with pineapple is the biggest trigger ever. I will have hives for a week. I should have waited to start the diet though because I don't know if that is why I am having less syncope or the aspirin. I see Dr Afrin again on Wednesday and I will have more labs done so I will keep you guys posted.

28 October 2010 10:47 AM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:54:32

(Archived message from pdl - original forum)
Ugggh, just need to vent a little. Called my hematologist nurse and had originally been told that my D816v mutation was negative, but I started thinking about it and realized there is no way he could already know that. It takes 2-3 weeks for the mutation test to come back. The nurse went thru my records and said you are write he did write it was negative and the test will not be back for another week. He has to change your records. Now I don't know if I have MCAD or if I actually have Mastocytosis. I am now already disappointed with the doctor. I can't believe he already messed up. They still do not want to do a BMB, since the endoscopy showed mast cells. Well don't you need to check the shape of the cells in the bone marrow etc and to show what level you are at? Any thoughts?

28 October 2010 09:38 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 14:55:34

(Archived message from pdl - original forum)
So, the 816 mutation came in and it is negative. The doctor only wants to up my aspirin dosage and put me on famantodine. I am up to 8 adult aspirin a day and 20mg of famantodine a day. He said he will see me in a month. I am sort of worried about this. He said I have been putting up with it for two years or long..be patient but my insurance runs out in January so I am a little frustrated. I said we needed to go ahead and do any major test that need to be done before then and he said there are not anymore. He said he does not need to do a BMB because I had the endoscopy. What do you all think. My tryptase is a 20. My stomach mast cells were 14. My intestinal were 30. I have hives, syncope, vertigo, rocking floating feeling, headaches, major fatigue and numbness here and there. I only get diahrrea about once every two weeks. No shock though. He dx me with mast cell activation disease. What do you think about his treatment?

04 November 2010 01:21 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 15:03:14

(Archived message from starflower - original forum)
An endoscopy is no substitute for a bone marrow biopsy!!!!

That being said... you're unlikely to have aggressive SM. The basic treatment is the same for indolent SM and MCAD: H1 antihistamines (Zyrtec, Allegra, Claritin, Atarax, etc...), H2 antihistamines (Pepcid is fine or else Zantac), a mast cell stabilizer (Gastrocrom... if you can afford it... or ketotifen), and a leukotriene inhibitor (Singulair, Zyflo, etc...). Even though you're not a shocker you should carry a set of EpiPens just in case... although I would have someone administer an EpiPen if the syncope lasts for more than a few seconds. It could very well be your only sign of anaphylaxis.

I'm really, really sorry that your insurance is running out in January. I think you'll be OK without the bone marrow biopsy, but you do need to be on the proper medications and continue to work with a doctor who knows something about mast cell disorders. A bone density scan would be a really good idea. Did this doctor already check your prostaglandin levels? It makes me FURIOUS (you must be ten times more furious) that anybody would prescribe aspirin to someone they think has a mast cell disorder without checking their prostaglandin levels FIRST. If yours are normal then there is absolutely no reason to be on such a potentially dangerous treatment.

Thanks for the update pdl. Sorry if my post seems a little angry... I'm angry at your doctor and the health care insurance system!

Heather

__________________
Through the years I have learned
Some things worth the tellin'
And you'd be right in guessin'
That each and every lesson... they were hard won.
04 November 2010 03:50 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 15:04:30

(Archived message from lisathuler - original forum)
Hi Pdl, I have to REALLY back Heather in this one cause she's right on the nose about what your doctor is saying! You can look in ANY of the literature for diagnosing mastocytosis and they ALL will say that the diagnosis is based upon a BMB and the reason for this is because not enough studies have been done anywhere else as to what diagnoses mastocytosis!!! I'm not saying that you don't have mastocytosis but then you just might not have it There are other disorders which will raise mast cells within tissues and it doesn't necessarily mean that it is mastocytosis and this is because mast cells are involved in any kind of inflammatory condition. This is why they depend upon the bone marrow as the major marker because it's the only place that is CONSISTANTLY used to determine whether or not you have systemic mastocytosis.

That having been said, anyone who is going through what you are who is showing the symptoms you show and who has proven elevated mast cells in other areas MUST have a bone marrow biopsy!! The findings that I showed, of some extra mast cells that of 4 and 5 in the intestine and bladder as well as the 11 to the field in my cervix was plenty of enough information for my dermatologist and hematologist to call for a bone marrow biopsy!! I have a NORMAL tryptase!!! And yet in spite of the normal tryptase they BOTH felt that my studies warrented further searching within the bone marrow. Your doctor doesn't seem to be understanding these things.

However, I do have to agree with the treatment of the aspirin in that this is supported by other studies. Whether or not the dosage is appropriate is what I have to question. But I don't agree with it if you've not had your prostaglandins or urine methyl histamine tested! Heather's right, it's got to be studied FIRST before its taken any further. He can't base his treatment purely because you're not doing well on anti-histamines. He's got a good guess going there, but it is dangerous and it's a good thing you're not reacting to the aspirin, but warning, the risk and potential is always there.

As to that syncope, according to the literature syncope is an END ORGAN REACTION!! Pdl, this IS ANAPHYALXIS!! It's probably not being cause by a typical vaso-vagal reaction it may be a neurocardiogenic reaction instead or it could also be vasoplegia. Not all syncope is created equal as they say and depending upon how it is, it's very, very dangerous! I'm the queen of syncope here and elsewhere, sweety and I'm not saying this to be bragging! I know it sounds weird for me to state it in this way, but we masto patients, independant of whether it is MCAD or SM, we can go through an extremely reaction of this sycope called prolonged syncope. No other disease in the world does this particular kind of syncope and it's only been studied once!! It's been seen with some masto patients and it's been noted in several patient case histories, but it's never really been studied in any depth. Well, I go through this about 2 x a week on average now. It keeps increasing in frequency and strength and it's a very serious reaction of ANAPHYLAXIS!! It's what is considered a SEVERE cardiovascular anaphylactic reaction!!! And this must be very seriously considered in your case.

Yet, lets go beyond that situation here Pdl, cause you are up against a real situation here with that insurance of yours about to run out. Pdl, I'm suspecting your case here may be that of a very rare form of masto which has only recently been discovered. I very strongly suggest that you speak with Dr. Akin about this. I'll bet you anything that Heather will back me when I ask you these two questions...

DO YOU HAVE HIVES?
DO YOU HAVE ANGIOEDEMA?

I'm willing to bet your answer is NO.

If it is no, then I'm suspecting that you may be a clonal-MCAD patient, a form which is only recently discovered! Dr. Escribano recently published an article about this form and how to differenciate it between the non-clonal MCAD and the clonal patients in that his studied showed that it has 5 major characteristics in that it is more common among: MEN there was NO HIVES or ANGIOEDEMA and there were SEVERE CARDIOVASCULAR REACTIONS as well as the other symptoms of anaphlaxis, and patients underwent SYNCOPE!!

These 5 findings were what set these patients apart from those of cases like Heather's and some others. This is what my case is showing and I've got to do another BMB and send it off to Spain for Dr. Basson to investigate!!

Now, I think that it's really important that you speak with Dr. Akin and see what he may have to say about this for if he thinks that this could be your case he may say, COME SEE ME ASAP before your insurance runs out!!

However, do not lose hope if your insurance runs out Pdl because you could always get into the NIH with a study they have for Idopathic Anaphylaxis and they will do all of the appropriate studies of your bone marrow and genetic studies looking for this clonal-MCAD form of masto. They'll fly you there and fly you home and fully investigate this issue of trying to see why things are what they are with you in that I believe that if they find out that you don't respond well to antihistamines they are going to want to know WHY!! They know about this study of Dr. Butterfield's and so they will try to find the appropriate answers as to what is going on with you. So, please, don't loose hope because you CAN indeed get the testing you need as well as the answers without having to be worried about your insurance!

Here's one study, and if you need contact information for someone at the NIH, just let me know and I'll give you the name of the person there.

Don't lose help Pdl, your situation is not hopeless!!!

Lisa

http://www.clinicaltrials.gov/ct2/show/NCT00719719?term=anaphylaxis&rank=2

By the way, I've spoken with the people at the NIH for myself in regards to this study and they told me that I didn't have to worry too much about the tryptase in anaphylaxis or even the hospitalizations or ER sitautions for they know that not all of us are able to get these things done. What they do need is doctor documentation as to these situations and this is what they are looking for, this is what they told me last year.

04 November 2010 05:53 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 15:05:17

(Archived message from pdl - original forum)Thanks Starflower and Lisa,
When I first got sick 2 years ago, I had severe angioedema hives for almost 6 months, then they went away. Then this past August I got this weird rash on the back of both my legs for about a month then it went away. Then in October the same weird rash came back for a couple a weeks and just recently went away. It was like 100's of tiny pimples but I also had a roscea look on the skin. Now on my left calf, I have these little red marks left, almost like if you had a red ink pen and dotted me a couple times on my legs. They don't go away. The hematologist yesterday said it was TMEP but he diagnosed me with MCAD. Isn't TMEP a part of mastocytosis, which he insists that I do not have mastocytosis. He says mine is simply mast cell activation. I am just not understanding. Thank you Lisa for the clinical trial link. I found one and emailed Dr Akin and Reed and asked if I could participate in one of the trials and also what he thought about my doctors treatment. I am a bit upset that my hematologist did not check my prostaglandin level and just put me on meds or for that matter, he did not do any test and started me on meds. The gastro is the one who did the biopsy because I was having stomach tightening feeling. The gastro luckily has dealt with masto patients and new what to look for. I am not so sure about the hematologist though. He says he is a mast cell specialist and is nice and spends alot of time with me but just wants to do the bare minimum with test. He ordered another cmp and cbc and aspirin level test to see what level the aspirin is in my blood at my next appt...but he did not check my prostaglandins to see if it even merited the use of 8 adult aspirin a day. I am currently on disability they listed the main cause as vertigo. My disability policy will end next year. Do MCAD patients have a hard time getting disability? I am so worried about insurance.

04 November 2010 11:29 PM

Title: Re: Deborah's tips! Bone marrow biopsy
Post by DeborahW, Founder on 12/25/10 at 15:06:59

(Archived message from starflower - original forum)What hematologist have you been seeing?? They might think they're a "mast cell specialist," but it doesn't seem likely given the bizarre medication scheme. If you don't do well on antihistamines you should be on a mast cell stabilizer. It can make a huge difference. Last fall I spent so much time feeling nauseated and dizzy that I seriously wondered if I would have to apply for disability. Adding Gastrocrom and Singulair (30mg/day) has alleviated 95% of my symptoms.

Have you had the TMEP confirmed with a skin biopsy? It's not a very common type, but you could absolutely have it... it does resemble the type of rosacea with visible capillaries (telangiectasias).

There's an excellent thread in the "Start Here" section about applying for disability. The label you have (MCAD, SM, TMEP, etc...) is not so important as your symptoms. A year ago I was feeling disabled by my symptoms... they were seriously interfering with my "major life activities" such as eating, standing, and doing my job. Here's a nice summary of what "disabled" means:

http://www.eeoc.gov/policy/docs/902sum.html

Now that I'm properly medicated I am no longer disabled by my disorder... even though it's chronic and will probably never go away. I hope you get to experience the same thing! Contacting Dr. Akin is definitely a step in the right direction. Good for you :)

Heather

__________________
Through the years I have learned
Some things worth the tellin'
And you'd be right in guessin'
That each and every lesson... they were hard won.
05 November 2010 06:48 AM