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Collecting symptoms

L96
  • By L96
  • Posted August 2, 2009 at 7:43 am · 82 replies
  • In Symptoms
  • Shared with the public
7 Recommendations

Weird as that may sound.

I'm new here, and have been reading topics all over the place before saying too much.

One thing I have noticed is that a lot of people seem to share the same symptoms, and they have been occuring for quite some time. As I have a review coming up, I was hoping you could all share a list of your symptoms for two reasons. 1) I would like a complete list for when I am chatting to my specialist next, and I'm finding that we share a lot of bizarre symptoms that would not have occured to me to be sarcoidosis related, and 2) I'm a researcher. The empirical research about sarcoidosis is contradictory at best, and seriously dubious at worst, so I wouldn't mind putting together a formal study a little further down the track.

Anyhow, on the list so far (numbers are arbitrarily assigned):
1) Fatigue
2) Coughing
3) Itchy arm pits
4) Itchy legs
5) Chest pain
6) Aching ribs
7) Aching joints
8) Sore fingers
9) Difficulty breathing
10) Aphasia (trouble with words)
11) EN
12) Poor short term memory/forgetfulness
13) Random aches and pains
14) Headache
15) Strange rashes
16) Night sweats
17) Weight loss
18) "Malaise"
19) Dizziness
20) Kidney stones
21) Frequent urination
22) Clumsiness
23) Visual disturbance (e.g. colour confusion, "swimming" vision)
24) Slurred speech
25) Palpitations

Have I missed any?

If I have, please add them.
At some stage I intend to compare the list we get with a list of stuff non-sarcoid sufferers come up with, to see if there is a significant difference, but that will be a bit later.

Thanks all.

Explore topics in this discussion:

Exercise Measles Dry mouth Back pain Bruises Kidney stones Anxiety Mumps Bronchitis Dizziness Asthma Thrush Fever Diabetes Aphasia Blisters Tinnitus Medrol Constipation Weakness Edema Insomnia Diarrhea Diverticulitis Eczema Lead poisoning Vertigo Erythema nodosum Pneumonia Whooping cough Prednisone Osteoporosis Sarcoidosis Arthritis Confusion GERD Seizures Rashes Pain Floaters Depression Ear infections Paralysis Methotrexate

82 replies

L96

Sorry, I am adding as I read....

26) Hair loss
27) Sore shoulders
28) Sore hips
29) Sore back
30) Thrush
31) Feeling like phone is vibrating in pocket
32) Low blood pressure
33) High blood pressure

L96

34) Itchy head

Catia

These are mine:

1) Erythema nodosum
2) Painful joints
3) muscle fatigue
4) fatigue
5) swollen ankles
6) Crazy dripping wet sweats then freezing
7) Lightheaded
8) Insomnia
9) "Smoker's" cough / wheezing
10) Phantom pain under right breast that knocks the wind outta me
11) High blood pressure
12) Shortness of breath
13) strange sensation of strangulation
14) Foggy mind

Each day, it seems something new appears.... This is all I can remember at the moment.

L96

Thanks, Catia. It's the remembering bit that is tricky.

My armpits have been itching like crazy for about 18 months now... I never considered it to be sarc-related until I read about other people having the same irritation!

So thanks for yours, they will help in compiling the definitive list. :P

Catia

I think there are a lot of other things that happen that we don't relate with are Sarc until someone else with Sarc mentions it and then you are left thinking "Ahhhh! Perhaps!" I have really bad "floaters" too. Ive had thorough eye examination but not since my diagnosis. ( I need to have it done, I know ) And I recently read that floaters, although not always, but certainly COULD be a part of the Sarc. Mine aren't severe, but they are pretty bad.

L96

Floaters are added, thank you. :-)

1) Fatigue
2) Coughing
3) Itchy arm pits
4) Itchy legs
5) Chest pain
6) Aching ribs
7) Aching joints
8) Sore fingers
9) Difficulty breathing/shortness of breath
10) Aphasia (trouble with words)
11) Erythema nodosum
12) Poor short term memory/forgetfulness
13) Random aches and pains
14) Headache
15) Strange rashes
16) Night sweats
17) Weight loss
18) "Malaise"
19) Dizziness
20) Kidney stones
21) Frequent urination
22) Clumsiness
23) Visual disturbance (e.g. colour confusion, "swimming" vision)
24) Slurred speech
25) Palpitations
26) Hair loss
27) Sore shoulders
28) Sore hips
29) Sore back
30) Thrush
31) Feeling like phone is vibrating in pocket
32) Low blood pressure
33) High blood pressure
34) Itchy head
35) Muscle fatigue
36) Swollen ankles
37) The whole hot/cold/hot/cold thing
38) Lightheaded
39) Insomnia
40) Phantom pain under right breast that knocks the wind outta me
41) strange sensation of strangulation
42) Foggy mind
43) Floaters in vision

JoyDav

Oh my!
Sometimes with this condition, almost never does anyone have all the symptoms I have. I started thinking that is was just feeling things that were not real. God Bless I'm not crazy yet! Question, Has anyones doctor just looked at them when they tell them what's going on with them with a simple look of "what ever"? OMG, I'ts like he doesn't believe me. Oh well, It's off the see him tomorrow, let's just see what happens. KEEP SMILING, everyone.

L96

That's it JoyDav... I have looked at all the research... the sole concession to symptoms seems to be "every case is different". Please tell me what's happening that makes you think you're crazy... and I will go as far as betting it's happening to others as well.

nanner

Let's not forget difficulty swallowing and hoarseness.

L96

Added, thank you! Also, if we can get a massive list of all possible symptoms, it will make for a solid comparision with a control group of non-sarc people.

1) Fatigue
2) Coughing
3) Itchy arm pits
4) Itchy legs
5) Chest pain
6) Aching ribs
7) Aching joints
8) Sore fingers
9) Difficulty breathing/shortness of breath
10) Aphasia (trouble with words)
11) Erythema nodosum
12) Poor short term memory/forgetfulness
13) Random aches and pains
14) Headache
15) Strange rashes
16) Night sweats
17) Weight loss
18) "Malaise"
19) Dizziness
20) Kidney stones
21) Frequent urination
22) Clumsiness
23) Visual disturbance (e.g. colour confusion, "swimming" vision)
24) Slurred speech
25) Palpitations
26) Hair loss
27) Sore shoulders
28) Sore hips
29) Sore back
30) Thrush
31) Feeling like phone is vibrating in pocket
32) Low blood pressure
33) High blood pressure
34) Itchy head
35) Muscle fatigue
36) Swollen ankles
37) The whole hot/cold/hot/cold thing
38) Lightheaded
39) Insomnia
40) Phantom pain under right breast that knocks the wind outta me
41) strange sensation of strangulation
42) Foggy mind
43) Floaters in vision
44) Difficulty swallowing
45) Hoarse voice/frog in throat

redfish

If my 4 episodes of iritis/uveitis in the last 6 months are related to sarc (serum lysozyme is elevated) then pain the the eye, photosensitivity and red eye are also symptoms along with the floaters.

L96

Thanks, redfish. Great nick, btw, is that a reference to Travis W?, by any chance?

1) Fatigue
2) Coughing
3) Itchy arm pits
4) Itchy legs
5) Chest pain
6) Aching ribs
7) Aching joints
8) Sore fingers
9) Difficulty breathing/shortness of breath
10) Aphasia (trouble with words)
11) Erythema nodosum
12) Poor short term memory/forgetfulness
13) Random aches and pains
14) Headache
15) Strange rashes
16) Night sweats
17) Weight loss
18) "Malaise"
19) Dizziness
20) Kidney stones
21) Frequent urination
22) Clumsiness
23) Visual disturbance (e.g. colour confusion, "swimming" vision)
24) Slurred speech
25) Palpitations
26) Hair loss
27) Sore shoulders
28) Sore hips
29) Sore back
30) Thrush
31) Feeling like phone is vibrating in pocket
32) Low blood pressure
33) High blood pressure
34) Itchy head
35) Muscle fatigue
36) Swollen ankles
37) The whole hot/cold/hot/cold thing
38) Lightheaded
39) Insomnia
40) Phantom pain under right breast that knocks the wind outta me
41) strange sensation of strangulation
42) Foggy mind
43) Floaters in vision
44) Difficulty swallowing
45) Hoarse voice/frog in throat
46) Pain in eye(s)
47) Red eye(s)
48) Sensitivity to light

Angelfox

Here is my 2 cents worth.
Terrible bloating in the stomach.
Noise and ringing in the ears.
Leg cramps.

L96

Thank you, Angelfox. We are getting a great list here.

1) Fatigue
2) Coughing
3) Itchy arm pits
4) Itchy legs
5) Chest pain
6) Aching ribs
7) Aching joints
8) Sore fingers
9) Difficulty breathing/shortness of breath
10) Aphasia (trouble with words)
11) Erythema nodosum
12) Poor short term memory/forgetfulness
13) Random aches and pains
14) Headache
15) Strange rashes
16) Night sweats
17) Weight loss
18) "Malaise"
19) Dizziness
20) Kidney stones
21) Frequent urination
22) Clumsiness
23) Visual disturbance (e.g. colour confusion, "swimming" vision)
24) Slurred speech
25) Palpitations
26) Hair loss
27) Sore shoulders
28) Sore hips
29) Sore back
30) Thrush
31) Feeling like phone is vibrating in pocket
32) Low blood pressure
33) High blood pressure
34) Itchy head
35) Muscle fatigue
36) Swollen ankles
37) The whole hot/cold/hot/cold thing
38) Lightheaded
39) Insomnia
40) Phantom pain under right breast that knocks the wind outta me
41) strange sensation of strangulation
42) Foggy mind
43) Floaters in vision
44) Difficulty swallowing
45) Hoarse voice/frog in throat
46) Pain in eye(s)
47) Red eye(s)
48) Sensitivity to light
49) Stomach bloating
50) Tinnitus
51) Leg cramps
52) Muscle spasms
53) Seizures

Vicster

I have had twitching in muscles where I can actually see in my upper arm and thigh a very fast fluttering it does not hurt but it does wake me, very strange sensation.

L96

Thank you, Vicster, that's a great description. :-)

1) Fatigue
2) Coughing
3) Itchy arm pits
4) Itchy legs
5) Chest pain
6) Aching ribs
7) Aching joints
8) Sore fingers
9) Difficulty breathing/shortness of breath
10) Aphasia (trouble with words)
11) Erythema nodosum
12) Poor short term memory/forgetfulness
13) Random aches and pains
14) Headache
15) Strange rashes
16) Night sweats
17) Weight loss
18) "Malaise"
19) Dizziness
20) Kidney stones
21) Frequent urination
22) Clumsiness
23) Visual disturbance (e.g. colour confusion, "swimming" vision)
24) Slurred speech
25) Palpitations
26) Hair loss
27) Sore shoulders
28) Sore hips
29) Sore back
30) Thrush
31) Feeling like phone is vibrating in pocket
32) Low blood pressure
33) High blood pressure
34) Itchy head
35) Muscle fatigue
36) Swollen ankles
37) The whole hot/cold/hot/cold thing
38) Lightheaded
39) Insomnia
40) Phantom pain under right breast that knocks the wind outta me
41) strange sensation of strangulation
42) Foggy mind
43) Floaters in vision
44) Difficulty swallowing
45) Hoarse voice/frog in throat
46) Pain in eye(s)
47) Red eye(s)
48) Sensitivity to light
49) Stomach bloating
50) Tinnitus
51) Leg cramps
52) Muscle spasms
53) Seizures
54) Uncontrollable muscle twitches/flutters

ozealan

Hi L96,

You'll know your nearing a complete list once you reach the 12 days of christmas.............................and a partridge in a pearrrrrrrrr treeeeeeeeeeeeeeeeeeee!!!!!!!!!!!

Cheers<<<<<<>>>>>>>

L96

LMFAO!!!

Thank you.

Kind of glad no one has added bat in belfy or bee in bonnet. :P

DoreenC

1) stiff joints
2) liver cyst
3) tingling sensation right side of mouth (waxes and Wanes)
4) chronic nasal inflammation ( dr says nose looks bad and I need aggressive treatment ie: steroid spray, saline flushes)
5) growth of collateral vessels in left chest area
6)gastritis
7) weight loss with GI symptoms of sharp abd pains,
nausea, early satiety ( lasting several weeks)

L96

Thank you DoreenC.

1) Fatigue
2) Coughing
3) Itchy arm pits
4) Itchy legs
5) Chest pain
6) Aching ribs
7) Aching/stiff/painful joints
8) Sore fingers
9) Difficulty breathing/shortness of breath
10) Aphasia (trouble with words)
11) Erythema nodosum
12) Poor short term memory/forgetfulness
13) Random aches and pains
14) Headache
15) Strange rashes
16) Night sweats
17) Weight loss
18) "Malaise"
19) Dizziness
20) Kidney stones
21) Frequent urination
22) Clumsiness
23) Visual disturbance (e.g. colour confusion, "swimming" vision)
24) Slurred speech
25) Palpitations
26) Hair loss
27) Sore shoulders
28) Sore hips
29) Sore back
30) Thrush
31) Feeling like phone is vibrating in pocket
32) Low blood pressure
33) High blood pressure
34) Itchy head
35) Muscle fatigue
36) Swollen ankles
37) The whole hot/cold/hot/cold thing
38) Lightheaded
39) Insomnia
40) Phantom pain under right breast that knocks the wind outta me
41) Strange sensation of strangulation
42) Foggy mind
43) Floaters in vision
44) Difficulty swallowing
45) Hoarse voice/frog in throat
46) Pain in eye(s)
47) Red eye(s)
48) Sensitivity to light
49) Stomach bloating
50) Tinnitus
51) Leg cramps
52) Muscle spasms
53) Seizures
54) Uncontrollable muscle twitches/flutters
55) Nausea
56) Tingling in/around mouth

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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