Aa
Timeline & History
Here's the REVISED timeline/summary I prepared for the neurologist on Thursday. I guess this indicates that something autoimmune is going on, at least. Too much info? Sorry this is long...
Sally Clark – Summary at July 2007, 37 YO Caucasian Female, DOB 4 Sept 1970.
Bloodtest Results - 2007
Date Test Result Range
22 Jan 07 FT3 2.03 2.8-7.1 pmol/L
FT4 10.58 12-22 pmol/L
TSH 0.573 0.27-4.2 mIU/L
(Following this result increased t4 by 50 mcg/day).
12 Feb 07 Total Protein 73 66 – 87 g/L
Albumin 45.8 34-48 g/L
Globulin 27.2 32-39 g/L
Creatinine (F) 75.52 45-84 umol/L
SGOT (F) 29.6 up to 32 U/L
SGPT (F) 27.5 up to 31 U/L
Prolactin 436.2 102 – 496 uIU/ml
Potassium 4.4 3.5-5.0 mmol/L
7 April 07 FT3 5.01 2.8-7.1 pmol/L
FT4 13.81 12-22 pmol/L
TSH 0.039 0.27-4.2 mIU/L
11 June 07 OGTT FBS 5 3.89-6.38mmol/L
OGTT 1st Hr 5.1 < 9.2
OGTT 2nd HR 4.5 < 7.7
OGTT 3rd Hr 4.1 1.68 mmol/L
LDL 1.70 1.56-4.55 mmol/L
VLDL 0.35 0.25-0.79 mmol/L
FT3 4.49 2.8-7.1 pmol/L
FT4 16.58 12-22 pmol/L
TSH 0.023 0.27-4.2 mIU/L
Prolactin (F) 579 102-496 uIU/ml
LH (luteal) 8.75 1 – 11.4
FSH (luteal) 3.95 1.7 – 7.70
Estradiol (luteal) 67.01 43.8-211 pg/mL
8am Cortisol 278.3 171 – 536 nmol/L
15 June 07 Vitamin D 220 47 – 144 nmol/L
iPTH 56.3 12 – 72 pg/mL
Antithyroglobulin ab < 20 (negative)< 40 IU/ml
Antimicrosomal antibody Negative
Anti-TPO Antibody 26.9 (negative)<35 IU/ml
6 July 07 Serum Ferritin 13.02 6-81 ng/ml
6 July 07 Serum Transferin 234 212-360 mg/dl
Serum Vit B12 312 223-1132 pg/mL
Other Diagnostics 2007
- Chest X-ray clear
- Testing for & diagnosis of asthma
- Repeat MRI: showed Microadenoma, white spots.
Current Medications at July 2007
1. Dessicated thyroid 125 mcg + Thyroxine 100 mcg (adjusted 23-7-07)
2. Parlodel ½ tablet / day (at bed time) (started July 07)
(Nausea ongoing & bothersome side effect).
3. Vitamin B12 oral (500 mcg x 3/day) (started July 07)
4. Antihistamine (celestamine), 1 tab 2pd, and as required to manage symptoms (dosing changed from as required (Jan 07) to 2/day in July 07).
5. Symbicort – 2 dose/day (since Jan 07)
6. Ventolin – as required & before training session (since Jan 07)
Medical Timeline
1992 Consult with rheumatologist for back and joint pain (wrist / hips).
No specific findings. No treatment. Suggested it was psychosomatic.
1995 Lived and studied in China.
End 1995 Moved to Hong Kong to start work with environmental company.
1996 Shingles attack, treated with antiviral meds.
1997 Moved from Hong Kong to Philippines (for work).
1998 ER visit for kidney stones. Pain killers given. Resolved without treatment.
1999 Consult Gastroenterologist for reflux, hyperacidity, abdominal discomfort.
Diagnosis Gastritis. Use PPIs, antacids, Motilium. Symptoms continued.
1998-1999 Rapid weight gain despite diet and regular exercise (tennis, gym).
Progressive fatigue, depression, exercise intolerance. Disrupted menstruation.
Mid 2000 Weight up to 210+ lbs. Severe symptoms. Finally diagnosed hypothryoid, polycystic ovarian syndrome, IBS. Treatment levothyroxine, continued PPIs, Diane 35, metformin. (stopped Diane 35, Metformin, PPIs after about 1 year).
Parathyroid problems with elevated iPTH, low calcium? Treated with calcitriol (calcium and iPTH levels returned to normal after about 2 years and discontinued calcitriol).
Gastric symptoms continued – but improved with thyroid treatment. Continued with diet and exercise. Weight loss progressed.
Mid 2004 Commenced triathlon activities. Weight about 165 lbs.
Continuing stomach problems. Chronic D-C. Nicknamed “El Cubetta” – “the toilet” by triathlon team mates.
Muscle cramping on-going problem –particularly in swimming. Improves a little with continued conditioning.
Thyroid med dose adjusted up.
Sept 2004 MRI subsequent to continuing long-term galactorea. Pituitary microadenoma noted. Started on parlodel. Discontinued due to side effects (after about 6 months).
Mid 2006 Father in Australia died from skin cancer (after 6 year battle)…
Started desiccated thyroid (about July 06) – assist with symptoms particularly mood and energy.
End 2006. Training for Iron-Man. Tummy problems dramatically worse – daily chronic D, bloating, reflux, belching, pain (affects training).
Chronic itching.
Chronic non-productive cough.
Dec. Consult Gastro – Endo/Colonoscopy carried out. Diagnose IBD from colonoscopy biopsy, no endoscopy biopsy carried out. Pt. declined medication. Decided to trial gluten free diet (based on family history). Near complete resolution of gastric symptoms with diet change and strict adherence to GF diet. Symptoms recur if gluten is eaten.
4th qtr - first notice visual symptoms: flashes of light, movement in peripheral vision. Intermittent only. Occasional base of skull headaches.
Early 2007 Consult allergy asthma dr. (Dr. De Vera) Asthma diagnosed. Started steroid inhaler & ventolin as required.
Itching continues – low back, trunk, face.
Skin allergy testing +ve for rice, chicken, mango, tilapia, fish paste, dust mites. Systemic response to allergy testing & was treated with oral steroids. Prescribed daily antihistamine.
Have not done strict elimination diet yet, but initial testing seems to have fluctuating & non-predictable allergy response (ie. Itchy one day from eating something, no response the next day).….
Feb 2007 Completed first Ironman Triathlon in 16:45. Good experience. Want to do it again.
June 2007 Repeat MRI: Microadenoma, white spots.
Mid 2007 Weight about 150 lbs.
Visual symptoms become much daily event.
Strange sensations: occasional feeling that face is numb (in places), prickling sensations (over head), burning sensations in legs. Base of skull headaches more frequent. More tired than usual / concentration poorer. Delayed training recovery compared to teammates. Often catch feet when walking (shoes?? Lazy?? – Don’t usually wear heels)… am famous for bumping into things / dropping things / being clumsy… disassociated from body feelings…
Hot flushes.
Itching symptoms (not daily).
Muscle cramping much worse during swimming / after training / even at rest.
Doctors: Endocrinologist: Dr. Mike Villar
Asthma Dr.: Dr. De Vera
Sally Clark – Summary at July 2007, 37 YO Caucasian Female, DOB 4 Sept 1970.
Bloodtest Results - 2007
Date Test Result Range
22 Jan 07 FT3 2.03 2.8-7.1 pmol/L
FT4 10.58 12-22 pmol/L
TSH 0.573 0.27-4.2 mIU/L
(Following this result increased t4 by 50 mcg/day).
12 Feb 07 Total Protein 73 66 – 87 g/L
Albumin 45.8 34-48 g/L
Globulin 27.2 32-39 g/L
Creatinine (F) 75.52 45-84 umol/L
SGOT (F) 29.6 up to 32 U/L
SGPT (F) 27.5 up to 31 U/L
Prolactin 436.2 102 – 496 uIU/ml
Potassium 4.4 3.5-5.0 mmol/L
7 April 07 FT3 5.01 2.8-7.1 pmol/L
FT4 13.81 12-22 pmol/L
TSH 0.039 0.27-4.2 mIU/L
11 June 07 OGTT FBS 5 3.89-6.38mmol/L
OGTT 1st Hr 5.1 < 9.2
OGTT 2nd HR 4.5 < 7.7
OGTT 3rd Hr 4.1 1.68 mmol/L
LDL 1.70 1.56-4.55 mmol/L
VLDL 0.35 0.25-0.79 mmol/L
FT3 4.49 2.8-7.1 pmol/L
FT4 16.58 12-22 pmol/L
TSH 0.023 0.27-4.2 mIU/L
Prolactin (F) 579 102-496 uIU/ml
LH (luteal) 8.75 1 – 11.4
FSH (luteal) 3.95 1.7 – 7.70
Estradiol (luteal) 67.01 43.8-211 pg/mL
8am Cortisol 278.3 171 – 536 nmol/L
15 June 07 Vitamin D 220 47 – 144 nmol/L
iPTH 56.3 12 – 72 pg/mL
Antithyroglobulin ab < 20 (negative)< 40 IU/ml
Antimicrosomal antibody Negative
Anti-TPO Antibody 26.9 (negative)<35 IU/ml
6 July 07 Serum Ferritin 13.02 6-81 ng/ml
6 July 07 Serum Transferin 234 212-360 mg/dl
Serum Vit B12 312 223-1132 pg/mL
Other Diagnostics 2007
- Chest X-ray clear
- Testing for & diagnosis of asthma
- Repeat MRI: showed Microadenoma, white spots.
Current Medications at July 2007
1. Dessicated thyroid 125 mcg + Thyroxine 100 mcg (adjusted 23-7-07)
2. Parlodel ½ tablet / day (at bed time) (started July 07)
(Nausea ongoing & bothersome side effect).
3. Vitamin B12 oral (500 mcg x 3/day) (started July 07)
4. Antihistamine (celestamine), 1 tab 2pd, and as required to manage symptoms (dosing changed from as required (Jan 07) to 2/day in July 07).
5. Symbicort – 2 dose/day (since Jan 07)
6. Ventolin – as required & before training session (since Jan 07)
Medical Timeline
1992 Consult with rheumatologist for back and joint pain (wrist / hips).
No specific findings. No treatment. Suggested it was psychosomatic.
1995 Lived and studied in China.
End 1995 Moved to Hong Kong to start work with environmental company.
1996 Shingles attack, treated with antiviral meds.
1997 Moved from Hong Kong to Philippines (for work).
1998 ER visit for kidney stones. Pain killers given. Resolved without treatment.
1999 Consult Gastroenterologist for reflux, hyperacidity, abdominal discomfort.
Diagnosis Gastritis. Use PPIs, antacids, Motilium. Symptoms continued.
1998-1999 Rapid weight gain despite diet and regular exercise (tennis, gym).
Progressive fatigue, depression, exercise intolerance. Disrupted menstruation.
Mid 2000 Weight up to 210+ lbs. Severe symptoms. Finally diagnosed hypothryoid, polycystic ovarian syndrome, IBS. Treatment levothyroxine, continued PPIs, Diane 35, metformin. (stopped Diane 35, Metformin, PPIs after about 1 year).
Parathyroid problems with elevated iPTH, low calcium? Treated with calcitriol (calcium and iPTH levels returned to normal after about 2 years and discontinued calcitriol).
Gastric symptoms continued – but improved with thyroid treatment. Continued with diet and exercise. Weight loss progressed.
Mid 2004 Commenced triathlon activities. Weight about 165 lbs.
Continuing stomach problems. Chronic D-C. Nicknamed “El Cubetta” – “the toilet” by triathlon team mates.
Muscle cramping on-going problem –particularly in swimming. Improves a little with continued conditioning.
Thyroid med dose adjusted up.
Sept 2004 MRI subsequent to continuing long-term galactorea. Pituitary microadenoma noted. Started on parlodel. Discontinued due to side effects (after about 6 months).
Mid 2006 Father in Australia died from skin cancer (after 6 year battle)…
Started desiccated thyroid (about July 06) – assist with symptoms particularly mood and energy.
End 2006. Training for Iron-Man. Tummy problems dramatically worse – daily chronic D, bloating, reflux, belching, pain (affects training).
Chronic itching.
Chronic non-productive cough.
Dec. Consult Gastro – Endo/Colonoscopy carried out. Diagnose IBD from colonoscopy biopsy, no endoscopy biopsy carried out. Pt. declined medication. Decided to trial gluten free diet (based on family history). Near complete resolution of gastric symptoms with diet change and strict adherence to GF diet. Symptoms recur if gluten is eaten.
4th qtr - first notice visual symptoms: flashes of light, movement in peripheral vision. Intermittent only. Occasional base of skull headaches.
Early 2007 Consult allergy asthma dr. (Dr. De Vera) Asthma diagnosed. Started steroid inhaler & ventolin as required.
Itching continues – low back, trunk, face.
Skin allergy testing +ve for rice, chicken, mango, tilapia, fish paste, dust mites. Systemic response to allergy testing & was treated with oral steroids. Prescribed daily antihistamine.
Have not done strict elimination diet yet, but initial testing seems to have fluctuating & non-predictable allergy response (ie. Itchy one day from eating something, no response the next day).….
Feb 2007 Completed first Ironman Triathlon in 16:45. Good experience. Want to do it again.
June 2007 Repeat MRI: Microadenoma, white spots.
Mid 2007 Weight about 150 lbs.
Visual symptoms become much daily event.
Strange sensations: occasional feeling that face is numb (in places), prickling sensations (over head), burning sensations in legs. Base of skull headaches more frequent. More tired than usual / concentration poorer. Delayed training recovery compared to teammates. Often catch feet when walking (shoes?? Lazy?? – Don’t usually wear heels)… am famous for bumping into things / dropping things / being clumsy… disassociated from body feelings…
Hot flushes.
Itching symptoms (not daily).
Muscle cramping much worse during swimming / after training / even at rest.
Doctors: Endocrinologist: Dr. Mike Villar
Asthma Dr.: Dr. De Vera
Hi Sally...
I am looking over your time line. Since your neuro visit is tomorrow I want to help you tweak the time line. I hope you are looking on the forum.
Wanna
I am looking over your time line. Since your neuro visit is tomorrow I want to help you tweak the time line. I hope you are looking on the forum.
Wanna
Hi Sally,
I am writing this quickly because I am hoping you will see this before tomorrow.
In 1992, what was the pain you were having? Try to explain it.
In 2004, what were the side effects from the parodel? Are you certain that you had side effects?
Also, look at the posting on making a time line (Time Line 101)…I bumped it up to the front of the forum for you. It explains a bit about presentation.
Also, all your blood work and medication put them at the back of the time line. Make your actual time line the first part of your “presentation.”
Do you have your actual blood work test results? That would be much better if you do.
Also, start out with a statement about who you are and what you believe to be the start of all this. You are obviously an active woman, so mention how this has changed you life. How has your activity level changed…how has your ability level changed, or has it?
These are just some quick point so you. Do they make sense to you?
I hope this was helpful. Please don’t feel I am being critical; that is not my intention. I want you to have the best possible time line you can.
Hope you see this!!!
Wanna
I am writing this quickly because I am hoping you will see this before tomorrow.
In 1992, what was the pain you were having? Try to explain it.
In 2004, what were the side effects from the parodel? Are you certain that you had side effects?
Also, look at the posting on making a time line (Time Line 101)…I bumped it up to the front of the forum for you. It explains a bit about presentation.
Also, all your blood work and medication put them at the back of the time line. Make your actual time line the first part of your “presentation.”
Do you have your actual blood work test results? That would be much better if you do.
Also, start out with a statement about who you are and what you believe to be the start of all this. You are obviously an active woman, so mention how this has changed you life. How has your activity level changed…how has your ability level changed, or has it?
These are just some quick point so you. Do they make sense to you?
I hope this was helpful. Please don’t feel I am being critical; that is not my intention. I want you to have the best possible time line you can.
Hope you see this!!!
Wanna
Hi,
I was admitted to hospital yesterday after blood test detected a high level of enzyme usually found with heart attack. also was referred for neurologist workup. Am still confined. So far looks like heart is fine. Neuro is not. They are now doing full workup for MS. The neuro says he thinks MS based on phyical, mri and history (timeline very helpful) but diagnostics are to define how bad and as baseline. Limited access to internet. Don;t know yet when will be discharged. Dr Mike my endo who insisted to admitted me won't say. Will catch uplater. Nurse will come looking for me soon. lots of tests tomorrow. am upset, but not surprised. Suspect is different tobeing told. am ok, just terribly fatigued and i walk like i'm drunk.
take care all.
sally
I was admitted to hospital yesterday after blood test detected a high level of enzyme usually found with heart attack. also was referred for neurologist workup. Am still confined. So far looks like heart is fine. Neuro is not. They are now doing full workup for MS. The neuro says he thinks MS based on phyical, mri and history (timeline very helpful) but diagnostics are to define how bad and as baseline. Limited access to internet. Don;t know yet when will be discharged. Dr Mike my endo who insisted to admitted me won't say. Will catch uplater. Nurse will come looking for me soon. lots of tests tomorrow. am upset, but not surprised. Suspect is different tobeing told. am ok, just terribly fatigued and i walk like i'm drunk.
take care all.
sally
Sorry to hear you are in the hospital. Let us know how you are doing when you are able.
Best wishes to you.
Wanna
Best wishes to you.
Wanna
Sorry about your problems. I will be thinking of you and hoping that things get better. Try to keep your spirits up and know all of us here are hoping for the best!
Be Well
Doni
Be Well
Doni
Hi. Got wifi on my own computer now so I can type better. Still in the hospital. They are going to do all the neurological tests this afternoon. Evoked potentials, EEG or something like that, plus eye tests etc.c
Feelinhg pretty bad though not in pain except for muscle cramping and nearly continual headache and wierd sensations happening all over. Gotta go back up to the room as I'm expecting the drs soon. Take care all.
Sally
Feelinhg pretty bad though not in pain except for muscle cramping and nearly continual headache and wierd sensations happening all over. Gotta go back up to the room as I'm expecting the drs soon. Take care all.
Sally
Oh dear!! I'm sorry you decompensated so badly! Which enzyme prompted the admission? Well, this sort of does an end run (American Football term for by-passing the normal channels to get to the goal) around all of our insightful recommendations on how to get the doctors to take you seriously. Sounds like you have a gaggle of them (that's a herd of doctors on rounds) poking and prodding you. I really don't mean to make light of this. I'm sure you're feeling devastated. Sort of wishing you had been somaticizing, it just didn't sound like head case stuff.
Are you feeling bad because it's all so "real"? Or are you really feeling crummy? I'm thinking about you every minute. Did they begin any meds? What kinds of weird sensations? If it's MS, sounds like an acute relapse. I'm so glad you joined us before this blew up. Now we all know you and will be awaiting further word. Your family - Quix and all
Are you feeling bad because it's all so "real"? Or are you really feeling crummy? I'm thinking about you every minute. Did they begin any meds? What kinds of weird sensations? If it's MS, sounds like an acute relapse. I'm so glad you joined us before this blew up. Now we all know you and will be awaiting further word. Your family - Quix and all
Hi. Still admitted. Don't know when I will be getting out. They probably won't discharge me til they finish all the tests. They started the neuro tests today. The first was one where they put electrodes on your head and play sounds. You are supposed to sleep. They aborted after 30 minutes. Said they couldn't get any reading that made sense.... I was trying to relax, but the test itself was evoking vivid memories, then one frequency made lights flash behind my eyes, really really wierd. They will repeat that on monday. The others today were visual evoked potential, eeg, and nerve conduction where you lie on yoru tummy, theyput electrods on your legs and up your back and then zap you with electricity. Pretty painful - good thing I knew it wouldn't do damage.
Tomorrow they do muscle study.... stick needles in muscles and zap you (i guess). Should be interesting. Just wish it wasn't me.
This kind of ends my hope that I was just being a hypochondraic and somatasizing.
Failed the balance tests in the ER when they first admitted me. Reflexes are all still normal.
It is pretty devastating to have someone put what you suspect into words. It makes it so much more REAL. Am have fasiculations (lots of them) - the neuro helpfully pointed it all out. Muscle cramps. Ice/burning sensations in various spots, and if I get tired I start walking like a drunk. It's ok if I 'm not tired. Today was much better than yesterday after they finally let me sleep. Had friends came for dinner and we went to restaurant downstairs. At the beginning was fine.... but going back was already tired and was weaving around - even bumped into the wall.. they thought I was going to faint. NOT. Just I wasn't concentrating on walking hard enough....
I am so scared. I so want this to be MINOR. I want to be one of those who this is not going to be life changing. I haven't cried yet. I am not letting myself think about it. But man. This is so NOT easy. Gotta go. other emails to pay attention to. Am so glad you are all here. Wish I didn't have to share this journey with you all.... but guess I'm already in the same carriage.
Am not feeling too bad.....
The enzyme was something MM and something MB. it is usually high in heart attack. Mine is about 4 times normal. This is why the endo insisted on immediate admission as potential MI. But now I find out it can be high in abdominal injury or in neurological insult! Guess something is moving quickly at the moment. Acute exacerbation or something.
No meds yet. Just paracetamol PRN and bed rest. The neuro said he will discuss with me what drugs I will let them give me. Sounds ominous. I don't know what drugs are available here. They do let me walk around though. I actually feel better with activity than sitting stewing - AND my body is used to activity!
Thanks all. I am so glad you're all here. At least you guys understand. Talk to you soon. Am trying to stay positive. I sure as hell am going to fight this!
I guess it is better to know sooner rather than later.... so I can start dealing with it. and trying to minimise the damage. Is anyone here up on the low saturated fat diet I was reading about? Any input? I guess it wouldn't hurt.
Sally
Tomorrow they do muscle study.... stick needles in muscles and zap you (i guess). Should be interesting. Just wish it wasn't me.
This kind of ends my hope that I was just being a hypochondraic and somatasizing.
Failed the balance tests in the ER when they first admitted me. Reflexes are all still normal.
It is pretty devastating to have someone put what you suspect into words. It makes it so much more REAL. Am have fasiculations (lots of them) - the neuro helpfully pointed it all out. Muscle cramps. Ice/burning sensations in various spots, and if I get tired I start walking like a drunk. It's ok if I 'm not tired. Today was much better than yesterday after they finally let me sleep. Had friends came for dinner and we went to restaurant downstairs. At the beginning was fine.... but going back was already tired and was weaving around - even bumped into the wall.. they thought I was going to faint. NOT. Just I wasn't concentrating on walking hard enough....
I am so scared. I so want this to be MINOR. I want to be one of those who this is not going to be life changing. I haven't cried yet. I am not letting myself think about it. But man. This is so NOT easy. Gotta go. other emails to pay attention to. Am so glad you are all here. Wish I didn't have to share this journey with you all.... but guess I'm already in the same carriage.
Am not feeling too bad.....
The enzyme was something MM and something MB. it is usually high in heart attack. Mine is about 4 times normal. This is why the endo insisted on immediate admission as potential MI. But now I find out it can be high in abdominal injury or in neurological insult! Guess something is moving quickly at the moment. Acute exacerbation or something.
No meds yet. Just paracetamol PRN and bed rest. The neuro said he will discuss with me what drugs I will let them give me. Sounds ominous. I don't know what drugs are available here. They do let me walk around though. I actually feel better with activity than sitting stewing - AND my body is used to activity!
Thanks all. I am so glad you're all here. At least you guys understand. Talk to you soon. Am trying to stay positive. I sure as hell am going to fight this!
I guess it is better to know sooner rather than later.... so I can start dealing with it. and trying to minimise the damage. Is anyone here up on the low saturated fat diet I was reading about? Any input? I guess it wouldn't hurt.
Sally
Sally…this might sound odd, but be thankful you are getting so many tests done at once. It’s much better than being told, “Sorry, we cannot do anything for you. B-bye. Don't let the door hit you on the way out.”
It sounds like you are going to have EMG/NCS tests. I just had then done and they are not as bad as they sound, and actually the surface shocks are “worse” than the needles in the muscles. He shocks are a bit uncomfortable, but nothing intolerable. The tiny needles are nothing compared to the shocks. I have numbness in my hands and feet (worse in feet) so that might have helped with my comfort level.
Keep in touch…
Wanna
It sounds like you are going to have EMG/NCS tests. I just had then done and they are not as bad as they sound, and actually the surface shocks are “worse” than the needles in the muscles. He shocks are a bit uncomfortable, but nothing intolerable. The tiny needles are nothing compared to the shocks. I have numbness in my hands and feet (worse in feet) so that might have helped with my comfort level.
Keep in touch…
Wanna
Clarification...the tiny needles do not really hurt...I reread my post and I just wanted to make this clear.
Keep your spirits up and know that we are all here for you. I can't give any opinions about the medical part cause I still have a lot to learn, but I'll do my best to be here for moral support.
I am sure when I start the process toward a dx, I will need all of you big time.
Take care
doni
I am sure when I start the process toward a dx, I will need all of you big time.
Take care
doni
I agree that it is truly a blessing in disguise that you are in the hospital and goin gthrough all these tests. This is your ticket out of "whattheheck'swrongwithmetown". Your body is obviously in distress, so you are definitely where you need to be. We are all behind you holding you up - won't let ya fall. God bless.
Penn
Penn
The diet you may be referring to is the Swank Diet. It was promoted by a Dr. here in my home city. He's now retired. I will see if I can find a good summary of it and reprint it here so you don't have to waste your time surfing.
If your nerve/muscle tests are very abnormal please ask your doctor about Guillain-Barre or CIDP. I bring it up at lot. Truly I'm not obsessed with it, but it can mimic MS. It's called Chronic Inflammatory Demyelinating Polyneuroradiculopathy. It is a relapsing/remitting conditon of demyelinating attacks on the "peripheral nerves" as opposed to the CNS in MS. It is diagnosed by characteristic history, high protein in the CSF, and characteristic changes in the Nerve conduction studies. It can have "white matter" lesions, and many of the other nonspecific symptoms of MS like fatigue, cranial nerve involvement, heat intolerance. It is important because, it is often very TREATABLE, using IVIG or plasmapharesis.
I would do anything to be there with you (except the Phillipines sounds hot and humid). Is someone there with you? I'm thinking about you constantly. If this is MS, it does NOT mean that this is what your life will be like!!!! A relapse is often very acute with many symptoms. When it remits a huge amount of what you're going through may go away. Or it could be as simple as a neurological viral infection.
It's SO NOT FAIR!! Whatever you're going through should not happen to some who has been so good to their body and their spirit. When the MS happened to me I was already down and "out" of the swing of life.
I think your Dr. Neuro sounds very invested in your care and has really planned the gamut of tests. I'm hopeful he will find something minor and treatable. You're in my thoughts. Quix
I'll be back here with the details of the Swank diet. I'll put it on a separate thread so that this one is for messages to you.
If your nerve/muscle tests are very abnormal please ask your doctor about Guillain-Barre or CIDP. I bring it up at lot. Truly I'm not obsessed with it, but it can mimic MS. It's called Chronic Inflammatory Demyelinating Polyneuroradiculopathy. It is a relapsing/remitting conditon of demyelinating attacks on the "peripheral nerves" as opposed to the CNS in MS. It is diagnosed by characteristic history, high protein in the CSF, and characteristic changes in the Nerve conduction studies. It can have "white matter" lesions, and many of the other nonspecific symptoms of MS like fatigue, cranial nerve involvement, heat intolerance. It is important because, it is often very TREATABLE, using IVIG or plasmapharesis.
I would do anything to be there with you (except the Phillipines sounds hot and humid). Is someone there with you? I'm thinking about you constantly. If this is MS, it does NOT mean that this is what your life will be like!!!! A relapse is often very acute with many symptoms. When it remits a huge amount of what you're going through may go away. Or it could be as simple as a neurological viral infection.
It's SO NOT FAIR!! Whatever you're going through should not happen to some who has been so good to their body and their spirit. When the MS happened to me I was already down and "out" of the swing of life.
I think your Dr. Neuro sounds very invested in your care and has really planned the gamut of tests. I'm hopeful he will find something minor and treatable. You're in my thoughts. Quix
I'll be back here with the details of the Swank diet. I'll put it on a separate thread so that this one is for messages to you.
I have been out of the loop for a few days but want you to know I am here for you and proud to be part of a great group of people here to support you through this. Take care and Good luck with the tests. I hope you get home soon!
Kristin
Kristin
Hi everyone, thanks for your encouragement.
I am home. Discharged today. And almost back to square one. Although the neuro dr. originally was sure it was ms based on history and MRI, all of the muscle and nerve testing apparently came back normal. So he is not prepared to make any diagnosis other than to say that there is obviously something going on and we should just watch and wait. He referred me back to the endo for ongoing follow-up.
Of course, I know that negative nerve and muscle testing doesn't mean I don't have MS. Just means that nothing is showing up.
Actually, I was supposed to be discharged yesterday. I was given fish for lunch yesterday and about 1 1/2 hrs later, just as my endo was discussing the lack of clear findings, started to feel very hot... I was telling him that and suddenly my ears started burning. Aha! Allergy reaction. Told him. This is the third time I have had such a reaction. I went bright red all over and very hot. Doc Mike gave me antihistamine first, then when I started getting breathing trouble benadryl and I slept all afternoon.... (probably not a bad thing as I had a bit of an anxiety and cried most of the previous night - hospitals are very lonely places) woke up still feeling hot but much better..... Then they called my allergologist who had already visited me informally once I texted her I was admitted (she is a very nice and very smart lady) (the first time this happened was early this year - in my allergologists office after they did allergy skin testing, the second time was about 3 weeks ago - but both without breathing problems). She has given me high dose prednisone for 4 doses over 3 days... until tuesday......
She and Doc Mike agree that MS is not ruled out... but will not be diagnosed at this stage... guess these things take time.... and can't blame them for wanting evidence... (maybe a blessing as far as insurance is concerned - I found some small print that excludes neurological conditions).... and they think that the increasing allergy reactions (asthma and food allergies in the past 12 months or so) are a symptom of something else... autoimmune and /or endocrine - to be explored further.
I asked them both separately if they thought this could just be pshychosomatic and they both said no - there is something going on, just they don't know what yet...
They retested the enzyme that prompted my admission. CK-MB. This is a marker usually for cardiac damage (ie. heart attack). I was admitted for evaluation of suspected MI. But all the cardiac testing including 2-d echo came back clear.... After 3 days rest the CK-mb was even higher <25 is normal.... I was 81 on admission, and 85 just prior to discharge. They both said they had never known it to be high in anyone except following heart attack. However, the neurologist said it could also be high if there was brain injury or abdominal injury.... ?????? I will have to research further.
The Neurologist said that once all the results were compiled Dr. Mike should review everything and see if any picture emerged.... I will get a second opinion from another neurologist once I have all the results.
I am both relieved and upset not to have a diagnosis. I am really questioning myself. How can I be feeling like this and have nothing clearly wrong? Could it really be all in my head? Just don't know. Maybe the sensory stuff, but not the visual stuff.... I don't know how I could possibly be imagining that.... will see if it improves with the prednisone over the next 2 days..
Lost about 3 kg in the 5 days in hospital.... hope I can maintain it.... very expensive 3 kg!!!!!! And the enforced rest, though reluctant on my part, surely can't hurt.
Don't know what to do or think now.
For now allergologist said we will try to get the asthma and allergies under control, and we will start exploring other autoimmune links... whatever....
Back to work and training tomorrow.
Sally
I am home. Discharged today. And almost back to square one. Although the neuro dr. originally was sure it was ms based on history and MRI, all of the muscle and nerve testing apparently came back normal. So he is not prepared to make any diagnosis other than to say that there is obviously something going on and we should just watch and wait. He referred me back to the endo for ongoing follow-up.
Of course, I know that negative nerve and muscle testing doesn't mean I don't have MS. Just means that nothing is showing up.
Actually, I was supposed to be discharged yesterday. I was given fish for lunch yesterday and about 1 1/2 hrs later, just as my endo was discussing the lack of clear findings, started to feel very hot... I was telling him that and suddenly my ears started burning. Aha! Allergy reaction. Told him. This is the third time I have had such a reaction. I went bright red all over and very hot. Doc Mike gave me antihistamine first, then when I started getting breathing trouble benadryl and I slept all afternoon.... (probably not a bad thing as I had a bit of an anxiety and cried most of the previous night - hospitals are very lonely places) woke up still feeling hot but much better..... Then they called my allergologist who had already visited me informally once I texted her I was admitted (she is a very nice and very smart lady) (the first time this happened was early this year - in my allergologists office after they did allergy skin testing, the second time was about 3 weeks ago - but both without breathing problems). She has given me high dose prednisone for 4 doses over 3 days... until tuesday......
She and Doc Mike agree that MS is not ruled out... but will not be diagnosed at this stage... guess these things take time.... and can't blame them for wanting evidence... (maybe a blessing as far as insurance is concerned - I found some small print that excludes neurological conditions).... and they think that the increasing allergy reactions (asthma and food allergies in the past 12 months or so) are a symptom of something else... autoimmune and /or endocrine - to be explored further.
I asked them both separately if they thought this could just be pshychosomatic and they both said no - there is something going on, just they don't know what yet...
They retested the enzyme that prompted my admission. CK-MB. This is a marker usually for cardiac damage (ie. heart attack). I was admitted for evaluation of suspected MI. But all the cardiac testing including 2-d echo came back clear.... After 3 days rest the CK-mb was even higher <25 is normal.... I was 81 on admission, and 85 just prior to discharge. They both said they had never known it to be high in anyone except following heart attack. However, the neurologist said it could also be high if there was brain injury or abdominal injury.... ?????? I will have to research further.
The Neurologist said that once all the results were compiled Dr. Mike should review everything and see if any picture emerged.... I will get a second opinion from another neurologist once I have all the results.
I am both relieved and upset not to have a diagnosis. I am really questioning myself. How can I be feeling like this and have nothing clearly wrong? Could it really be all in my head? Just don't know. Maybe the sensory stuff, but not the visual stuff.... I don't know how I could possibly be imagining that.... will see if it improves with the prednisone over the next 2 days..
Lost about 3 kg in the 5 days in hospital.... hope I can maintain it.... very expensive 3 kg!!!!!! And the enforced rest, though reluctant on my part, surely can't hurt.
Don't know what to do or think now.
For now allergologist said we will try to get the asthma and allergies under control, and we will start exploring other autoimmune links... whatever....
Back to work and training tomorrow.
Sally
Hi,
I am also new to this forum but i wanted to let you know i read you threads & was sorry you had to be hospitalized... it sounded like a rough time but happy to hear you are home.
Just wanted to say i will keep you in my prayers.
God bless.
Frann
I am also new to this forum but i wanted to let you know i read you threads & was sorry you had to be hospitalized... it sounded like a rough time but happy to hear you are home.
Just wanted to say i will keep you in my prayers.
God bless.
Frann
Hi
Was following your post so pleased your home. Cant really comment on any of the medical stuff only that the doctor did confirm with you that this was not in your head so dont even worry about that!! you know too something is wrong and they will find out and hopefully soon.
God Bless
Was following your post so pleased your home. Cant really comment on any of the medical stuff only that the doctor did confirm with you that this was not in your head so dont even worry about that!! you know too something is wrong and they will find out and hopefully soon.
God Bless
Does anyone know what these tests could mean. The most abnormal test I got was the CK MM and MB. They have ruled out heart attack through more sensitive cardiac enzymes, ecg and 2-d echo. They are scratching their heads... any input? Does anyone know if there is any significance to the CKMM getting lower, while the CK-MB is rising?
Last Monday was: CK total - 100.47 (range 24-2-4),
CKMM - 19.47 (range 24-179)
CK-MB - 81.00 (range 0-25)
Last Friday was: CK total - 99.29 (range 24-2-4),
CKMM - 15 (range 24-179)
CK-MB - 84.2 (range 0-25)
Sally
Last Monday was: CK total - 100.47 (range 24-2-4),
CKMM - 19.47 (range 24-179)
CK-MB - 81.00 (range 0-25)
Last Friday was: CK total - 99.29 (range 24-2-4),
CKMM - 15 (range 24-179)
CK-MB - 84.2 (range 0-25)
Sally
Hi, Sally, I'm glad you're home, and sound a little better. Welcome again to diagnostic limbo. I tried to do some reading last night on your questionabout persisitently elevated CK-MB. I can't really do medical research because all of the good articles are in pricey subscription services. This is what I gleaned. The "gist" of it should be right. My absolute facts may not be.
They've known for a long time that "marathoners" aka ultra athletes can have mammothly elevated MB fractions from a non-cardiac source, after their event. Now, death from cardiac dsiease is wlso well known in this group, but what I was looking at excluded that group. Now, here is what I "gleaned" is vague. The abstracts seemed to say that in people with damage/regneration going on in their muscles, the percentage of MB fiber is in the muscles increases.
This group of people include endurance athletes, weight- training and such. As muscle strength is built, I understand, small amounts of damage is done to the muscles,. This damage is healed and the muscle rengenerates stronger, better and faster (sounds like the Bionic Man). As it regenerates it produces more CK-MB in the muscles involved. Sally, does this make sense? Thus, in a situation of damage (exercise or disease) the circulationg CK will have significantly more CK-MB.
Now, for the down side. It also appears that people with primary "muscle disease", be it a type of dystrophy or an autoimmune inflammation also have a damage/regeneration cycle going on, but the damage exceeds the regeneration. These people will also have a high total CK and a high MB fraction in their blood. I saw a reference (which, of course I couldn't access) indicating that the inflammatory disease with the highest non-cardia MB levels was an autoimmune disease called "polymyositis."
Please take all of this with several liberal handfulls of salt. I only repeated things that I saw reference to several times. You may have a muscle biopsy in your future and certainly an intensive autoimmune workup. I don't know if any of this fits into MS. If the MB results from the exercise and the other symptoms added to the problem then it could.
About your results. I don't understand your "range" in the CK total. Would you look closely at what you wrote and see if it is wrong? I don't see a real rise/fall in the numbers. All the body's enzymes change from hour to hour and the two values for each the MM and NB fractions are essentially the same. The MB is not necessarily rising, it may just be two values within the expected "lab error" range of the measurement. However, with the two days of rest one would certianly expect the levels to be dropping. That seemed concerning. With this going on have your docs advised you to halt training, yes?
Boy! I hope this helped. Quix
They've known for a long time that "marathoners" aka ultra athletes can have mammothly elevated MB fractions from a non-cardiac source, after their event. Now, death from cardiac dsiease is wlso well known in this group, but what I was looking at excluded that group. Now, here is what I "gleaned" is vague. The abstracts seemed to say that in people with damage/regneration going on in their muscles, the percentage of MB fiber is in the muscles increases.
This group of people include endurance athletes, weight- training and such. As muscle strength is built, I understand, small amounts of damage is done to the muscles,. This damage is healed and the muscle rengenerates stronger, better and faster (sounds like the Bionic Man). As it regenerates it produces more CK-MB in the muscles involved. Sally, does this make sense? Thus, in a situation of damage (exercise or disease) the circulationg CK will have significantly more CK-MB.
Now, for the down side. It also appears that people with primary "muscle disease", be it a type of dystrophy or an autoimmune inflammation also have a damage/regeneration cycle going on, but the damage exceeds the regeneration. These people will also have a high total CK and a high MB fraction in their blood. I saw a reference (which, of course I couldn't access) indicating that the inflammatory disease with the highest non-cardia MB levels was an autoimmune disease called "polymyositis."
Please take all of this with several liberal handfulls of salt. I only repeated things that I saw reference to several times. You may have a muscle biopsy in your future and certainly an intensive autoimmune workup. I don't know if any of this fits into MS. If the MB results from the exercise and the other symptoms added to the problem then it could.
About your results. I don't understand your "range" in the CK total. Would you look closely at what you wrote and see if it is wrong? I don't see a real rise/fall in the numbers. All the body's enzymes change from hour to hour and the two values for each the MM and NB fractions are essentially the same. The MB is not necessarily rising, it may just be two values within the expected "lab error" range of the measurement. However, with the two days of rest one would certianly expect the levels to be dropping. That seemed concerning. With this going on have your docs advised you to halt training, yes?
Boy! I hope this helped. Quix
Thanks Quix. Yes, I see what you mean about the lab stuff... the doctors still considered that it was a rising result.
The muscle thing and athletes - yes. But not to this degree. And not with the other symptoms going on. I was thinking of researching that topic under "sports medicine" becuase endurance athletes don't behave like the general population.
Had a really bad night. Feel like I am burning up, tremor, flushing.... Still burning and tremoring... my body feels like it has been rubbed in ground Chilli.
Texted my endo and allergy doctor already. They both want to see me ASAP. Will see allergy dr. today and endo tomorrow. Allergy doctor wants to get carcinoid syndrome evaluated and (hopefully) eliminated. More tests today. Don't want that one! She also wants the endo to look at possible thyroid or adrenal causes...
As far as training the coach has already told me he cannot continue to coach me under the current health circumstances...... I can act as his assistant, but may not train outdoors in any even possibly unsafe situation and without a companion who knows my history.... until and when things get sorted out.
Oh Geez. I am so stressed out over this. Sorry I am getting all the support and not giving any at the moment... hope I can reciproicate the support given here soon.... hope they find out what's wrong and how to treat it easily and I get my life back.....
Oh how quickly life can just disappear!!!!!!!
The muscle thing and athletes - yes. But not to this degree. And not with the other symptoms going on. I was thinking of researching that topic under "sports medicine" becuase endurance athletes don't behave like the general population.
Had a really bad night. Feel like I am burning up, tremor, flushing.... Still burning and tremoring... my body feels like it has been rubbed in ground Chilli.
Texted my endo and allergy doctor already. They both want to see me ASAP. Will see allergy dr. today and endo tomorrow. Allergy doctor wants to get carcinoid syndrome evaluated and (hopefully) eliminated. More tests today. Don't want that one! She also wants the endo to look at possible thyroid or adrenal causes...
As far as training the coach has already told me he cannot continue to coach me under the current health circumstances...... I can act as his assistant, but may not train outdoors in any even possibly unsafe situation and without a companion who knows my history.... until and when things get sorted out.
Oh Geez. I am so stressed out over this. Sorry I am getting all the support and not giving any at the moment... hope I can reciproicate the support given here soon.... hope they find out what's wrong and how to treat it easily and I get my life back.....
Oh how quickly life can just disappear!!!!!!!
I agree about the "athletes and MB" and nt to this extent. I guess I was just telling you how little I actually found. There is a hypothyroid myopathy, which also will show an elevated MB fraction.
And I also agree that one doesn't "write off as normal" when you have so many other symptoms happening. I hope I didn't sound like it was all explanable. I merely meant to bring up instances where the MB fraction can be elevated outside cardiac damage. I did research it using enduranace athlete and athlete to get what I found. All of it said that endurance athletes have a whole other physicology.
Were last night's symptoms suggestive of too much thyroid? Or did it feel like more of the allergic reaction. Are your eyes puffy or do your hands feel swollen and stiff? You might need a short burst of steroids.
The endo stuff just confounds the neuro stuff. I'm out of my knowledge league. Did the doc's say anything about a diffuse "myopathy?" (like the poymyositis) You might mention it to the endo tomorrow. Do you also see a rheum? I can't remember.
Don't be silly about the "support" thing. In any group like ours we all rotate through bad stuff and lean on the others. That's what support means. We all need it and we give it when we can. Just posting here with us shows others they're not alone and gives them a chance to put what they are going through into a group perspective.
I'm hoping this is all transitory. I'm so sad life has risen up and slapped you in the face. Thinking about you, Quix
And I also agree that one doesn't "write off as normal" when you have so many other symptoms happening. I hope I didn't sound like it was all explanable. I merely meant to bring up instances where the MB fraction can be elevated outside cardiac damage. I did research it using enduranace athlete and athlete to get what I found. All of it said that endurance athletes have a whole other physicology.
Were last night's symptoms suggestive of too much thyroid? Or did it feel like more of the allergic reaction. Are your eyes puffy or do your hands feel swollen and stiff? You might need a short burst of steroids.
The endo stuff just confounds the neuro stuff. I'm out of my knowledge league. Did the doc's say anything about a diffuse "myopathy?" (like the poymyositis) You might mention it to the endo tomorrow. Do you also see a rheum? I can't remember.
Don't be silly about the "support" thing. In any group like ours we all rotate through bad stuff and lean on the others. That's what support means. We all need it and we give it when we can. Just posting here with us shows others they're not alone and gives them a chance to put what they are going through into a group perspective.
I'm hoping this is all transitory. I'm so sad life has risen up and slapped you in the face. Thinking about you, Quix
Hi Quix.
Remember I said I am not sensitive. Everything you say is fine. I am so grateful to have some people here who I can actually talk to. I texted both my doctors this morning. Both want to see me today! Will be heading out from the office in a few minutes (the driver will take me).
I am currently on prednisone (supposed to be 3 days only) 40 mg. That is why I didn't go straight to the ER last night. Logically, I thought it should ok...
Actually the burning feels like a neuraligic type thing. It was moving around and waxing and waning, but is pretty constant now, as is the tremor. When it's really intense, I can hardly feel my feet. The flushing comes and goes. I put an icepack on my back. It helps. The visual stuff is playing up. I have 'cameras' going off intermittently in my peripheral vision.
They are thinking thyroid myopathy as an option..... ANA was negative. I don't know what else they'd look at. No time to research now. I have been doing payroll and talking to my key employees in case I am confined again.... I advised my big boss by mail that we have a 'don't know situation' and we should decide on strategy depending on what happens. He is also a long term and very good friend, but doesn't understand medical stuff at all. I am waiting for his call.....
Other than the flushing and heat which I also get with my most recent allergic experiences. The are also thinking of carcinoid syndrome....
I don't know if they will admit me again.... am prepared.
I hope I can laugh about this in a few months and say "What a drama Queen". All this has got so bad so quickly!
In the meantime I had better get all my affairs in order for whatever is coming.....
Will keep you guys informed. If ever you can't get hold of me and need an update, my secretary can advise you on ***@****. Hope it won't come to that.....
Sally
Remember I said I am not sensitive. Everything you say is fine. I am so grateful to have some people here who I can actually talk to. I texted both my doctors this morning. Both want to see me today! Will be heading out from the office in a few minutes (the driver will take me).
I am currently on prednisone (supposed to be 3 days only) 40 mg. That is why I didn't go straight to the ER last night. Logically, I thought it should ok...
Actually the burning feels like a neuraligic type thing. It was moving around and waxing and waning, but is pretty constant now, as is the tremor. When it's really intense, I can hardly feel my feet. The flushing comes and goes. I put an icepack on my back. It helps. The visual stuff is playing up. I have 'cameras' going off intermittently in my peripheral vision.
They are thinking thyroid myopathy as an option..... ANA was negative. I don't know what else they'd look at. No time to research now. I have been doing payroll and talking to my key employees in case I am confined again.... I advised my big boss by mail that we have a 'don't know situation' and we should decide on strategy depending on what happens. He is also a long term and very good friend, but doesn't understand medical stuff at all. I am waiting for his call.....
Other than the flushing and heat which I also get with my most recent allergic experiences. The are also thinking of carcinoid syndrome....
I don't know if they will admit me again.... am prepared.
I hope I can laugh about this in a few months and say "What a drama Queen". All this has got so bad so quickly!
In the meantime I had better get all my affairs in order for whatever is coming.....
Will keep you guys informed. If ever you can't get hold of me and need an update, my secretary can advise you on ***@****. Hope it won't come to that.....
Sally
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