Aa
Hello I am back, came around that circle quickly
Hello everyone, I am back in your lovely presence. :) That was fast wasn't it?
I recently spent more time at the CC with my new Endo. He about flipped out when he went over my situation and the fact that really no one is doing anything about it. He said he has warning bells in his head going off all over the place.
(For the wonderful people I haven't met yet- I was pregnant several years ago and became increasingly ill until collapsing. After a rush to the big city hospital they found I was in a Diabetic Dka (high sugar coma), had pancreatitis caused by untreated gall bladder disease and had 2 strokes. In summer of this year, the gov. doctor stated I have MS, my neuro does not agree. He states my problems are a combo of diabetic nerve damage, stroke effects, and a chronic Epstein Barr virus)
My new doc. was alarmed right away, he said my blood pressure is orthostatic? and my thyroid is double the normal size. He mentioned several things including Addison's disease and also said I might have something rare, even new, like Nobel prize paper type stuff he said. He also said he was leaning toward possibly MS or something of the same nature, or at least now wants me to go to the Mellen Center up there and see what they think.
He said the fact that I had neurologic and peripheral damage that all happened at the same time as the DKA was really something to pay attention to, in his thoughts.
He feels that the degree of neuropathy I have, didn't have time to be caused by the diabetes and was caused by whatever caused all of this. Also said he felt I would have more evidence of the stroke damage in my walk, ect, if the brain damage was caused by the strokes.
I am still waiting on a bunch of tests they ran that day. So now I have another doctor who thinks MS or some type of variant or in that group. But the question is why have my pancreas, possibly adrenal glands and thyroid been ruined.
I have to say he seemed quite excited at my case (maybe dreaming of that Nobel Prize? LOL) but I am glad since he might get to the bottom of the cause of all this and help me.
Hope to catch up reading soon and post and meet new people here, looks like I am back if you want me LOL. ;)
Jazzy the fizzle
I recently spent more time at the CC with my new Endo. He about flipped out when he went over my situation and the fact that really no one is doing anything about it. He said he has warning bells in his head going off all over the place.
(For the wonderful people I haven't met yet- I was pregnant several years ago and became increasingly ill until collapsing. After a rush to the big city hospital they found I was in a Diabetic Dka (high sugar coma), had pancreatitis caused by untreated gall bladder disease and had 2 strokes. In summer of this year, the gov. doctor stated I have MS, my neuro does not agree. He states my problems are a combo of diabetic nerve damage, stroke effects, and a chronic Epstein Barr virus)
My new doc. was alarmed right away, he said my blood pressure is orthostatic? and my thyroid is double the normal size. He mentioned several things including Addison's disease and also said I might have something rare, even new, like Nobel prize paper type stuff he said. He also said he was leaning toward possibly MS or something of the same nature, or at least now wants me to go to the Mellen Center up there and see what they think.
He said the fact that I had neurologic and peripheral damage that all happened at the same time as the DKA was really something to pay attention to, in his thoughts.
He feels that the degree of neuropathy I have, didn't have time to be caused by the diabetes and was caused by whatever caused all of this. Also said he felt I would have more evidence of the stroke damage in my walk, ect, if the brain damage was caused by the strokes.
I am still waiting on a bunch of tests they ran that day. So now I have another doctor who thinks MS or some type of variant or in that group. But the question is why have my pancreas, possibly adrenal glands and thyroid been ruined.
I have to say he seemed quite excited at my case (maybe dreaming of that Nobel Prize? LOL) but I am glad since he might get to the bottom of the cause of all this and help me.
Hope to catch up reading soon and post and meet new people here, looks like I am back if you want me LOL. ;)
Jazzy the fizzle
Thank you everyone! You are so dear and wonderful. It is good to be back, I promise stick around. I felt like I didn't have much to offer anyone looking for MS advice and could never say anything pertinent.
The results of the cortisol test are back and the nurse said they are in normal range. The other tests are not back yet. What on earth could be wrong with me? If only someone knew. Maybe this guy will figure it out, I can only hope.
I am making a list. Does this ring a bell with anyone?
1. Abruptly became a Type 1 diabetic in my 30's. No family history of diabetes
2. Pancreatitis - reoccurring
3. Neuropathy in the legs - both legs - Emg's abnormal
4. Brain scan findings - 2 spots labeled Ischemic Infarcts
5. Lung MRI (or CAT scan cant' remember)- abnormal - multiple calcified lymph nodes
6. Low Blood pressure - Ortho static
7. Very low heart rate
8. Positive TCD with bubble test - Heart Cath surgery & no hole found
9. Thryoid double the normal size
10. Crushing fatigue
11. Severe muscle pain and weakness & muscle spasms
12. Stabbing, buzzing, burning pain - feeling of 'wet' on individual areas when actually not
13. Confusion, scary short term memory issues, difficulty thinking and reading
14. Lymph node pain - severe under left armpit area only (same side as calcified lung nodes)
15. Difficulty swallowing
16. Very cold all the time
17. Dizziness
18. Chronic diarrhea - every day - every time I eat (sorry gross)
19. Falling down or run into walls often. (It would be funny if it didnt' suck LOL)
20. High EBV titers
21. No stamina whatsover - wiped out at any little effort at all
22. Once in a while, slightly positive Ana's
Recent test shows negative for Addison's disease, Rheumatology says its nothing in their dept. (per the C.C. doc.), Evoked potentials normal
Thats my story and what a mess it is. LMAO
Love ya
Jazzy
The results of the cortisol test are back and the nurse said they are in normal range. The other tests are not back yet. What on earth could be wrong with me? If only someone knew. Maybe this guy will figure it out, I can only hope.
I am making a list. Does this ring a bell with anyone?
1. Abruptly became a Type 1 diabetic in my 30's. No family history of diabetes
2. Pancreatitis - reoccurring
3. Neuropathy in the legs - both legs - Emg's abnormal
4. Brain scan findings - 2 spots labeled Ischemic Infarcts
5. Lung MRI (or CAT scan cant' remember)- abnormal - multiple calcified lymph nodes
6. Low Blood pressure - Ortho static
7. Very low heart rate
8. Positive TCD with bubble test - Heart Cath surgery & no hole found
9. Thryoid double the normal size
10. Crushing fatigue
11. Severe muscle pain and weakness & muscle spasms
12. Stabbing, buzzing, burning pain - feeling of 'wet' on individual areas when actually not
13. Confusion, scary short term memory issues, difficulty thinking and reading
14. Lymph node pain - severe under left armpit area only (same side as calcified lung nodes)
15. Difficulty swallowing
16. Very cold all the time
17. Dizziness
18. Chronic diarrhea - every day - every time I eat (sorry gross)
19. Falling down or run into walls often. (It would be funny if it didnt' suck LOL)
20. High EBV titers
21. No stamina whatsover - wiped out at any little effort at all
22. Once in a while, slightly positive Ana's
Recent test shows negative for Addison's disease, Rheumatology says its nothing in their dept. (per the C.C. doc.), Evoked potentials normal
Thats my story and what a mess it is. LMAO
Love ya
Jazzy
Welcome back and thank goodness you found a doctor who cares enough to treat you. I hope that they can figure out what's wrong and how to fit it so that you feel better!
WOW! You've got you one of those "I'm going to get to the bottom" of this Drs. This is amazing and I'm glad you are in good care, finally!!! Nice to see you. Cjacks is right, if it's Addisons you need treatment, but seems like this Dr may not be convinced that, and if it is, maybe something else is causing it, and he's willing to find out.
You've been blessed my friend, welcome back, and good luck catching up! We've got so many new friends,
Be well,
SL
You've been blessed my friend, welcome back, and good luck catching up! We've got so many new friends,
Be well,
SL
Hello
This is a great place for us Limbolanders. People are very kind and generous. Stick around.
You are so fortunate to have found an aggressive dr. One who is moving in a forward direction for you. Mine is an investigator also. Its comforting to have someone on your corner. Finally !! Hooray!!
If you have Addisons you need immediate treatment . Stay on top of it.
I hope you're feeling better real soon
Jo
This is a great place for us Limbolanders. People are very kind and generous. Stick around.
You are so fortunate to have found an aggressive dr. One who is moving in a forward direction for you. Mine is an investigator also. Its comforting to have someone on your corner. Finally !! Hooray!!
If you have Addisons you need immediate treatment . Stay on top of it.
I hope you're feeling better real soon
Jo
Gosh you have been through the mill hun, great to see you are still so positive, sorry you still got all these problems but good you have a interested docotor.
welcome back
samantha
welcome back
samantha
Hey, Girl!
So glad to see your fizzly self again. I missed you! Like everyone has said, it sounds like the doc you have is the doc to have. I can't wait to read about you in the journals. We'll all fly out to Stockholm someday to see your doc pick up his Nobel prize...WHEN you get your diagnosis.
I can't believe you've been languishing in Limbo with us, but apart from us, for all this time. Poor thing! You're not going anywhere now, right? We really need to rename this forum. We should just call it Limboland and Several MSers. Or Potpourri, or something... You belong here with us.
Keep us updated and stick around to meet all the ne people. Glad you'rte back and feel well!
Zilla*
So glad to see your fizzly self again. I missed you! Like everyone has said, it sounds like the doc you have is the doc to have. I can't wait to read about you in the journals. We'll all fly out to Stockholm someday to see your doc pick up his Nobel prize...WHEN you get your diagnosis.
I can't believe you've been languishing in Limbo with us, but apart from us, for all this time. Poor thing! You're not going anywhere now, right? We really need to rename this forum. We should just call it Limboland and Several MSers. Or Potpourri, or something... You belong here with us.
Keep us updated and stick around to meet all the ne people. Glad you'rte back and feel well!
Zilla*
Welcome back! Well, we're not glad you're having all those problems, but very glad you're still here.
Hope this new dr is 'the one'. At least he is interested. And hope they can treat you. The adrenal and the thyroid need qualified and aggressive management for you to feel good.
Hang around. Let us know - actually we're all interested too, as well as caring about you!
Sally
Hope this new dr is 'the one'. At least he is interested. And hope they can treat you. The adrenal and the thyroid need qualified and aggressive management for you to feel good.
Hang around. Let us know - actually we're all interested too, as well as caring about you!
Sally
Welcome back!!!! Glad to hear from you; sad to hear that nothing's been done to help you. Thank God for your new doc! Sounds like a roller coaster ride - I'm dizzy:)
I hope you stick around now, regardless of what you find out. We've missed you.
Penn
I hope you stick around now, regardless of what you find out. We've missed you.
Penn
Well, I'm one of the newbies here and I am very glad to meet you!
I can't believe any one person can go through so much. My god girl you must be made out of some real tuff stuff, LOL!
I'm sorry you are going through so much, That is way to much for anyone to handle. I hope you have a great support system. I know that I have gotten alot of support here from all of the lovely people here.
Lots of hugs,
Kathy
I can't believe any one person can go through so much. My god girl you must be made out of some real tuff stuff, LOL!
I'm sorry you are going through so much, That is way to much for anyone to handle. I hope you have a great support system. I know that I have gotten alot of support here from all of the lovely people here.
Lots of hugs,
Kathy
Oh! FizzleFazzle!!! This wasn't supposed to happen. But I had no idea that no one was effectively treating you!! There could be no better situation than to be with a doc that is so interested he thinks it will be worth working up. This is because, if he really thinks it will bear publishing, he can't leave any **** unstoned. His colleagues in the Peer Review froup would pick him apart. He will be thorough. Not to jump on the bandwagon, but I was always suspicious about the stoke thing causing all of this.
Anyway, you are in the hands of an attentive and interest doc and that is good! Welocme back, I didn't want you to leave in the first place!
Orthostatic BP is one that fluccuates abnormally as you change position, from lying down, to sitting, to standing. The body has built in mechanisms to prevent all the blood from pooling in the legs when you stand up (though a lot of young women do get significant postural hypotension - the classic "head rush" on standing. It usually goes away as we age)
So that is a type of "autonomic" system neuropathy. Girl! You're a puzzlement!
Good to see you!
Quix
Anyway, you are in the hands of an attentive and interest doc and that is good! Welocme back, I didn't want you to leave in the first place!
Orthostatic BP is one that fluccuates abnormally as you change position, from lying down, to sitting, to standing. The body has built in mechanisms to prevent all the blood from pooling in the legs when you stand up (though a lot of young women do get significant postural hypotension - the classic "head rush" on standing. It usually goes away as we age)
So that is a type of "autonomic" system neuropathy. Girl! You're a puzzlement!
Good to see you!
Quix
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