[ECHOES]

Rhap, I'm sorry you are still suffering!
I don't know what type of doctor you have seen recently, but if you haven't seen an internal medicine doc or an endocrinologist or a neurologist (recently), that might be an idea. I think they 'lool' further than family doctors look because they have a specialized expertise and experience with patients with symptoms that are not so straightforward.

I also learned that even if the doc says all is well, it might be that what he/she isn't saying is that 'if this patient returns because symptoms are still present or worse, then I will (do another test, etc)". So it is really important to return and say "do more for me".

[Rhapsody]

Originally Posted by ECHOES

if you haven't seen an internal medicine doc or an endocrinologist or a neurologist (recently), that might be an idea.

I'm right there with you on this... internal medicine doctors are the only kind of doctors I see (and well of course a few specialist) - my primary doctor is also an internal medicine docotor - 2 Thumps UP!!

rhapsody, did you think any more about going to the mayo clinic in florida? i sort of had a sense this would be a good idea for you.

[Rhapsody]

Yes, I have thought about going to the Mayo Clinic - but sadly it does not fit into my schedule or mental health issues at the moment... I just wish some one would figure things out for me as I hate feeling sickly all the time and with out energy to function with.

[Rhapsody]

I just rescheduled my missed appointment with my rheumy last week (I was so drained that I sleep right through it - 12 hrs) and now I am writing down all my symptoms and I am taking them with me... my doctor and I are not leaving his office until we figure some thing out once and for all.... here is my list, bare with me as it is long.

1. Over all (never ending) Pain
2. Chronic Fatigue
3. Poor or Blurred Vision (just got glasses)
4. Pressure Points (keeps me up at night)
5. Tender Points (touch me I slap you)
6. Numbness (face & arms - hand & feet)
7. Tingling with Shock like Pain
8. Lightheaded with Nausea (feel like fainting)
9. Hair Loss
10. Dry Eyes with Stabbing Pain
11. Sleep Disturbance - Insomnia
12. Migraines & Headaches (daily)
13. GI Issues - Gas / IBS
14. Urinary Pain and Increase in Frequency
15. Chest Pain - Difficulty Breathing
16. Major Sinus Issues
17. Heat & Sun Sensitivity
18. Memory Loss - Difficulty Concentrating
19. Inner Anxious Feeling - but Mind is Calm
20. Joint Pain, Stiffness, Swelling
21. Muscle Pain with Muscle Spasm
22. Flu like feelings - (but not sick)
23. Swelling of Hands & Feet - Face & Eyes
24. Depression - from feeling sick and tired all the time
25. GERDS & PMDD

... people have suggested I look into

1. Lyme Disease
2. Fibromyalgia
3. Multiple Sclerosis
4. Rheumatoid Arthritis
5. Lupus

... I just wish I had a different life and new body to live in. :/

[Rhapsody]

I had my appointment today with my rheumy and while he was supportive he said he feels this is a medical issue for my primary to follow through with and not an arthritic condition based on my twelve year history with him and my most recent blood work.

So back to the drawing board it is with my primary doctor... she is an internal medicine doctor and a good one at that - wish me luck when I see hear.

[Rhapsody]

Just writing my arthritic conditions out so I can share and maybe get some more ideals as well as to
keep track of them all so I can find them easily when I see my doctor or have to see a new doctor.


1st Dx - Palindromic Rheumatism (1998)
one step away from full blown Rheumatoid Arthritis
feels like a ping pong game of pain is going on inside the body

2nd Dx - Polyarthritis (1999)
meaning five or more joints are involved (stiffness, pain, swelling)

3rd Dx - Bursitis (2003)
swelling and inflammation of the bursa sacks that surrounds our joints
body becomes sensitive to touch and has painful pressure points

... other Dx

4. Rosacea - facial skin disorder
5. Menieres Disease - inner ear issue w/ vertigo, hearing loss, fainting
6. Sjogrens Syndrome - Autoimmune Disorders, Dry Eyes & Mouth w/ pain
7. Deviated Septum w/ Sinusitis

8. IBS
9. TMJ
10. GERDS
11. PMDD

12. Fibromyalgia (has been talked about off the records due to insurance)


* * * *

Maybe if I sit down and look up all the issues I have and then write down their symptoms (and compare them) then I can try and help my doctors find the cause behind all my problems or at least help them find the why to every thing, therefore, allowing my self to receive the proper medication.

[sabby]

Hey (((((((( Rhap )))))))))

So sorry you are having such difficult times here right now. Many times we have symptoms that just seem to defy testing and doctors, it's quite maddening at times I'm sure.

Couple of questions I do have for you though is, have you ever been tested for Type II diabetes? Also, have you had a brain MRI recently? If not to either of them, it may be worth looking into.

Having migraines can very often create little white spots on your brain that are lesions. Lesions can create symptoms of neuropathy. Diabetes can also do the same thing.

I suffer with both as well as fibromyalgia. On any given day I can have a migraine, along with numbness and tingling, twitching and jerking nerve endings/muscles, facial pain, loss of strength, heat and cold sensitivities, blurred vision (either from the migraine-usually one eye is affected, or from the diabetes-both eyes tired and blurry). I will also sometimes have slight ataxia in my legs which makes it difficult to walk normally and I get off balance. I've been tested for MS in the past and the last neuro I saw, patted me on the back as he walked out of the room and said "Well, if you do have a mild case of MS, it's nothing to worry about". What an idiot, I never went back.

Just some thoughts for you hon. I hope you are feeling better very soon!

[Rhapsody]

Originally Posted by _sabby_

have you ever been tested for Type II diabetes?
have you had a brain MRI recently?

I have been tested for diabetes as my mother and my youngest brother has it - but I have always come back clear.
My mother has to take shots for hers and my brother was able to control his with diet and exercise.

I presently have an MRI done every two years due to my increasing bad symptoms, migraines, blurred vision, and numbness of the face.

Thanks for the suggestion....

[(JD)]

(((Rhapsody))) it's obvious that you have more than one issue going on, and that's very common. I do too, so I understand.

What a great list you've made! Now you can sort through it and separate the symptoms from each malady you have (such as the meniere's with vertigo etc. and TMD with vision, migraine, jaw, neck pains etc.) and also separate out the psychological issues resulting from trying to cope with the physical issues (depression, anxiety, stress symptoms etc.)

You won't find a doctor who treats it all, and I suspect you will be frustrated spinning your wheels in trying to do so (and wasting bunches of moolah.)

Once you have the issues somewhat divided...I say somewhat because some of the symptoms overlap into more than one cause...then begin checking as to what the most current treatments are for each one.

Once you have some new things to try, I would suggest that you then contact that particular doctor (or your basic one) and ask about trying one of them with her/him.

It can be very frustrating to have to figure things out on your own. I don't know about you but I was raised thinking that doctors are the ones who are supposed to do that, right? I mean, THEY are the ones with the umpteen years of study! But alas, we have to do the background searches and be the advocate for our own selves much of the time. As long as it results in the same outcome (better health) I think it's a good toss up.

Feel better soon.

[wickedwings]

Holy cow, Rhap. I have WEIRD symptoms, too! I'm getting them investigated, for sure! I'm 38 years old with hip pains. There is no arthritis in them, and I have other strange symptoms to go with it. I have a few theories to what might be going on with me. All this stuff piles up and make my eyeballs twirl (a saying of my own, not a symptom - LOL). Gotta keep your humor through it all....

[Rhapsody]

Originally Posted by wickedwings

Gotta keep your humor through it all....

For sure....