Aa
Update....looking like a positive diagnosis...
Thanks to all of you for you compassion, caring, concern and advice you have given me over these many months...you all helped me keep my sanity through this difficult journey and I greatly appreciate it! You are the best!!!
I have been having many tests at the Cleveland Clinic. They pretty much ruled out MS. ONE of my many blood tests came back high.....Tryptase....so I was sent to a hematologist. High tryptase is found in Mast Cell disease.
Since I stopped taking prednisone....I was on it for 1 1/2 years.....my symptoms have rapidly increased. I am now getting hives with my flushing episodes and have developed a bad rash on my chest and it is spreading.
I saw the hematologist today.....she said I haven't had any tests yet...EXCUSE ME!?? She went on to say I had a lot of tests, just not the right ones She thinks I have systemic mastocytosis.
I have a LOT of tests to come....quickly...she is worried since my symptoms are worsening rapidly I could go into anaphylactic shock....if I do...ER immediately. She can't give me any meds yet because of all the tests to come.
More blood work...CT scan of my chest, abdomen and pelvis with barium...biopsy of bone marrow and bone piece removed...biopsy of my rash and my hives by a dermatologist.....and that is just to start she said....she has to find out how many organs are affected and if I have the cancer version of the disease.
I asked her if Mastocytosis could also cause my "MS" symptoms...she said yes.
I also got the results of my 24 hour BP test....NO hypertension noted, but very low blood pressure especially at night....average at night was 88/56 with the lowest of 67/42!! GEEZ!
SOOO.....that's the latest....I have to go back tomorrow for an echocardiogram because my ekg came back abnormal. Next week starts the testings.....
Hugs to all!
Laurie :)
.
I have been having many tests at the Cleveland Clinic. They pretty much ruled out MS. ONE of my many blood tests came back high.....Tryptase....so I was sent to a hematologist. High tryptase is found in Mast Cell disease.
Since I stopped taking prednisone....I was on it for 1 1/2 years.....my symptoms have rapidly increased. I am now getting hives with my flushing episodes and have developed a bad rash on my chest and it is spreading.
I saw the hematologist today.....she said I haven't had any tests yet...EXCUSE ME!?? She went on to say I had a lot of tests, just not the right ones She thinks I have systemic mastocytosis.
I have a LOT of tests to come....quickly...she is worried since my symptoms are worsening rapidly I could go into anaphylactic shock....if I do...ER immediately. She can't give me any meds yet because of all the tests to come.
More blood work...CT scan of my chest, abdomen and pelvis with barium...biopsy of bone marrow and bone piece removed...biopsy of my rash and my hives by a dermatologist.....and that is just to start she said....she has to find out how many organs are affected and if I have the cancer version of the disease.
I asked her if Mastocytosis could also cause my "MS" symptoms...she said yes.
I also got the results of my 24 hour BP test....NO hypertension noted, but very low blood pressure especially at night....average at night was 88/56 with the lowest of 67/42!! GEEZ!
SOOO.....that's the latest....I have to go back tomorrow for an echocardiogram because my ekg came back abnormal. Next week starts the testings.....
Hugs to all!
Laurie :)
.
Thank you all for your love and encouragement!! And yes, Laura I was mad....listen to this!!....
I had to FIRST see a PCP at the Cleveland clinic.... she sent me to the endo and neuro....the endo is the one who did the tryptase test. After all the tests were done (the last bunch including the tryptase) I was sent back to the PCP.....she told me ALL my tests were normal....(she didn't know what a high tryptase meant....she told me I need to start exercising and losing weight....she was going to release me!!! The Neuro saw that tryptase test was ran two different times and it came back high....when I mentioned it to her she said and I quote "I don't know what that test is".
HELLO....I AM SICK....YOU ARE trying to find out what is wrong with me.....look on the internet for goodness sakes!!!!!!!!
It was the endo who got me in to see the hematologist. If it wasn't for him. I would be back at square one.
THINGS like this, is the reason you NEED your test results and KNOW what they mean!!! Mastocytosis is rare, but that is NO excuse for my PCP to release me just because she didn't know what it meant!! And all other tests were normal.
Don't worry she hasn't heard the last from me!! I am going to make sure she knows that she made a HUGE mistake!!! In hopes she won't ignore someone elses test result.!!
Laurie :)
I had to FIRST see a PCP at the Cleveland clinic.... she sent me to the endo and neuro....the endo is the one who did the tryptase test. After all the tests were done (the last bunch including the tryptase) I was sent back to the PCP.....she told me ALL my tests were normal....(she didn't know what a high tryptase meant....she told me I need to start exercising and losing weight....she was going to release me!!! The Neuro saw that tryptase test was ran two different times and it came back high....when I mentioned it to her she said and I quote "I don't know what that test is".
HELLO....I AM SICK....YOU ARE trying to find out what is wrong with me.....look on the internet for goodness sakes!!!!!!!!
It was the endo who got me in to see the hematologist. If it wasn't for him. I would be back at square one.
THINGS like this, is the reason you NEED your test results and KNOW what they mean!!! Mastocytosis is rare, but that is NO excuse for my PCP to release me just because she didn't know what it meant!! And all other tests were normal.
Don't worry she hasn't heard the last from me!! I am going to make sure she knows that she made a HUGE mistake!!! In hopes she won't ignore someone elses test result.!!
Laurie :)
It must be maddening that it has had to get this bad before they managed to find you the right specialist (I think I would be mad). But at least you seem to be heading in the right direction now.
Sounds scary that you could go into anaphylactic shock at any time.
It sounds like this doctor might be a winner and hopefully she can get the test results quickly and get you the treatment that you need before anything gets worse. I'll keep my fingers crossed that it is not the cancerous version.
Best of luck.
Laura
Sounds scary that you could go into anaphylactic shock at any time.
It sounds like this doctor might be a winner and hopefully she can get the test results quickly and get you the treatment that you need before anything gets worse. I'll keep my fingers crossed that it is not the cancerous version.
Best of luck.
Laura
Prayers offered, Laurie. Told someone else today that I just pray they tell me something I can believe that explains it all. I realize I might never even have that. We pray that your docs settle on the TRUE culprit, and that it's one with effective treatment readily available!
Wow! Your case is really a lesson for me! When I first came here a few monthes ago I thought the problem I was having with my legs mightbe related to MS.But found out it is due to the lumbar spinal stenosis I have.
I'm really glad you're seeing the right kind of specialists and finally getting the RIGHT kind of tests! I hope everything turns out and this isn't the malignant form of the disease.Take care.Btw,I LOVE the idea of eating your Taco Bell in the waiting room!
I'm really glad you're seeing the right kind of specialists and finally getting the RIGHT kind of tests! I hope everything turns out and this isn't the malignant form of the disease.Take care.Btw,I LOVE the idea of eating your Taco Bell in the waiting room!
I'm so glad someone finally thought to try the right test! Hang in there...
(((Hugs,)))
Tammy
(((Hugs,)))
Tammy
Laurie,
I'm glad there are honing in on your diagnosis. Hoping it's the benign kind! Although even that type is scaring and as you have experienced scary and possibly life threatening.
I would definetly ask for an Epipen and call EMS not drive youself to the hospital if things get out of control.
Sending good thoughts and best wishes for a good outcome to the testing!
Hugs!!!
Ren
I'm glad there are honing in on your diagnosis. Hoping it's the benign kind! Although even that type is scaring and as you have experienced scary and possibly life threatening.
I would definetly ask for an Epipen and call EMS not drive youself to the hospital if things get out of control.
Sending good thoughts and best wishes for a good outcome to the testing!
Hugs!!!
Ren
Thanks Shell for your caring and concern!
No epipen .....The hematologist can't give me any meds yet...because of the testing...that is why she is so concerned and trying to rush my testing...I did buy Benadryl incase of a anaphylactic episode. She (the hematologist) wants me to go get my blood drawn when I am having an attack AND get a biopsy of the hives....HELLO the attacks could happen at anytime and the hives don't last long...just being in the waiting room or driving to the dr office they could go away.
I came up with a brilliant Idea!! :)
Last week I had Taco Bell with a friend...(I RARELY eat out especially fast food) I had an attack and broke out in hives while I was still eating!
SOOO, when I go for my blood test AND when I have an appointment with the dermatologist .... I am going to buy the exact meal I had at Taco Bell and eat it in the waiting room!! :D
Hugs,
Laurie
No epipen .....The hematologist can't give me any meds yet...because of the testing...that is why she is so concerned and trying to rush my testing...I did buy Benadryl incase of a anaphylactic episode. She (the hematologist) wants me to go get my blood drawn when I am having an attack AND get a biopsy of the hives....HELLO the attacks could happen at anytime and the hives don't last long...just being in the waiting room or driving to the dr office they could go away.
I came up with a brilliant Idea!! :)
Last week I had Taco Bell with a friend...(I RARELY eat out especially fast food) I had an attack and broke out in hives while I was still eating!
SOOO, when I go for my blood test AND when I have an appointment with the dermatologist .... I am going to buy the exact meal I had at Taco Bell and eat it in the waiting room!! :D
Hugs,
Laurie
Thank you Laura I will! oxo
I agree the 'right' dx is crucial! If it wasn't for the endocrinologist ordering that one Tryptase blood test, I would have been sent home without any answers AGAIN!!
Mastocytosis can be fatal if not treated! I was actually taking Copaxone but I had a severe reaction to it.
So to all of you limbo-landers out there.....make sure EVERYTHING is ruled out before you settle for a dx.....If all your 'symptoms' don't fit....you can always have more than one thing going on!
Hugs,
Laurie
I agree the 'right' dx is crucial! If it wasn't for the endocrinologist ordering that one Tryptase blood test, I would have been sent home without any answers AGAIN!!
Mastocytosis can be fatal if not treated! I was actually taking Copaxone but I had a severe reaction to it.
So to all of you limbo-landers out there.....make sure EVERYTHING is ruled out before you settle for a dx.....If all your 'symptoms' don't fit....you can always have more than one thing going on!
Hugs,
Laurie
OMG Lady!
It seems you are really in good hands here - It must be scary to experience an escalating reaction like the one you describe. Do you have something to keep you like an epipen or benadryl or stronger if indeed you need to make that emergency run to ER?
I hope so :(
I don't know anything about mast cell, but praying you remain in good care. All the best to you today and the coming days, what a journey you are on.
(((Hugs)))
shell
It seems you are really in good hands here - It must be scary to experience an escalating reaction like the one you describe. Do you have something to keep you like an epipen or benadryl or stronger if indeed you need to make that emergency run to ER?
I hope so :(
I don't know anything about mast cell, but praying you remain in good care. All the best to you today and the coming days, what a journey you are on.
(((Hugs)))
shell
Laurie, we can add you to he list of people as examples that it isn't always MS. No matter how much we want and need an answer, it is critical that it be the right answer. I know very little about this disease and hope you are in good hands with the doctors. And just because it isn't MS doesn't mean we don't expect you to hang around and keep us updated, ok? Good luck with these next tests. I'll continue to hope it mis not malignant hugs, Laura
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