Will Someone look at my symptoms taking to the DR?

Oceanstar1974 · 10-11-2008, 08:30 PM

First I want to say sorry for the really long post! And thank you for reading if you do

Hi! I would like someone to look at my list of symptoms before I go to the Drs office. I have a appointment with my rheumatologist on Oct15 and finally found a primary Dr that I couldn’t see until Oct 20th. I called the rheumatologist office to ask if I should re-schedule and see him second, she said to keep it because I wouldn’t be able to get back in until Nov 18^th . So I see a rheumatologist first (he was my Dr for Carpel Tunnel) Anyway, I called him first because I started suspecting MS after I started doing some reading. I was on the couch for 30 days in July-August, speech started slurring, dizziness, memory loss, zoning out, shaking hands, pain behind eyeballs and all that good stuff. So after I started researching, MS started coming up a lot that is why I chose to go to him first. But now I’m not so sure, I started reading about PCOS again (mine is untreated, I’m not on anything for it) and hormonal issues and everything and so many things have all the same symptoms! So now I narrowed it down to a couple things I think it might be.

Low Progesterone/High Estrogen
Hypothyroidism
IR/boughts of hypoglycemia
And something else making my joints and back hurt

I’m worried about going to the DR because I don’t want to sound like a hypochondriac (my hubby already thinks I am L ) but I wanted to make a extensive list for myself and for the DR and also because I want to remember things so thought I should write it down. I also don't want to go because I hate being overweight and going! I'm sure alot of you can relate hopefully. Purposely I have been tracking everything I eat since September when I started eating better. I want to show them I do know how to eat healthy and the weight still wants to stay pretty much where it's at.
I think my main reason for wanting to start a work up is because I have felt worse this year and was DX with Fibromyalgia but NO other testing was done….I mean none..he didn’t rule anything else out. I went there to see a lady who specialized in it and saw her once. Got a letter in the mail saying she won’t be there anymore and that I’ll be seeing Dr Litchenstein. He never listened, throws Cymbalta at you and tells you to do go see his wife who teaches Yoga. Literally that was it.

I went to see my allergy DR a few weeks ago because they have been acting up this year also, and told him some stuff, he asked who I saw and when I told him he said “I’m not trying to stir the pot, but I would suggest you see someone else” This is in Annapolis, at and near the medical center so I think they all know of each other probably. So he suggested another one, thankfully he is in my insurance book.

Here’s a couple of questions for anyone who reads this, any help would be appreciated!
1. Can one doctor do all the blood tests, then depending on the results then I would go somewhere else. Or do they seem to want to do the blood tests that are only “related to their field”?
2. My ob/gyn takes months to get an appointment ( My appointment there is Nov 11 and it was made in beginning of Sept), if it is prog/est related and maybe I need Metformin..can a primary DR do that stuff or do I have to see my ob/gyn?

Ok here’s my list I‘m taking with me, sorry this post is sooo long but really curious what you all think about these symptoms since it seems like almost everyone here has something else along with PCOS.

List of all symptoms (It was formatted better in microsoft, sorry)

Extreme fatigue
Forgetfulness
Can’t concentrate when others talk.
slurring of words sometimes- talk slower so I won’t slur words because it feels like I’m going to and finding the right words to finish a sentence seems hard .
Extreme thirst and feeling of a dry mouth and lips. Need something to drink with me at all times.
Heat intolerant (don’t use heat in car and not turned up much in house during winter)- makes me feel nauseas and feel like falling asleep while driving so can’t use it.
Cold feet and hands compared to rest of body.
Loss of sex drive - takes longer to orgasm, not interested in sex anymore, pelvic pain esp in cervix/uterus, orgasms hurt like ovaries/uterus/muscles are being pulled tight.
Anxiety - startled at noises, heart races, get scared easily, dread being in crowds or talking to people.
Extreme moodiness almost all the time and really bad pms.
Occasional pain behind eyeballs. (really bad in July 08,went away after that for the most part. Sometimes happens when I‘m tired and when I cough and some other random times)
Can’t see well driving mostly at night- can’t see road signs (especially green exit and road signs), can’t drive well when cars with headlights are coming towards me.
Occasional floaters, mostly in left eye (Mostly in July -Aug)
Sometimes see flashing lights when looking around
occasional dizziness upon getting up from sitting
Headaches sometimes, mostly achy type seems to be usually from coughing or when allergies are acting up.
Flushness / redness of face, feels hot to me
Excessive facial dry skin
Dry hair- have to keep it short now because it looks like straw when grown out. Hair was long my whole life but now I have to have it short.
feeling off centered when walking- loss of balance- tend to lean one way I think- have been told I am out of alignment by a therapist. Ex: Purse falls off of one arm(right) but not the other(left) (Purse started falling off of that shoulder also! As of Aug-Sept)
drop things, not coordinated, general feeling of weakness - hard time opening jars, hurts my hand and arms feel to weak to do it, hands shake frequently
Extreme neck, shoulder pain, burning, achy and pins and needles feelings and sometimes “crawling” feelings on my arms and hands. Sometimes I think a cold raindrop fell on my arm but it’s not raining or I feel like a bug is on my arm but it’s not.
Really stiff neck and shoulders.
Extreme back pain -
left side - hurts while standing in 2 minutes or less
right side - hurts when walking past 10 minutes
Also hurts just from sitting, basically hurts at all times.

Right knee hurts when walking or standing.
Left hip hurts while walking
Left knee feels like there is pressure on the back of it - comes and goes
Feet go numb sometimes mostly while sitting certain ways. Right leg goes numb often when sitting.
Difficulty straightening leg or arm after its been bent for a while
Constipation - Since I can remember, about 4 or 5 yrs old. Frequent enemas when I was little and pain. Addicted to laxatives when I was a teenager. Only relief is for a few days during menstruation.
Frequent bloating even after eating small meal or even when I eat nothing at all(worse after any type of carbs or fiber) feels gassy but won't come out. Use of fiber pills caused so much gas and cramps in upper stomach and back that I cant use them anymore.
Frequent urination. Have been told during many sonograms that my bladder wasn’t empty although I had just used the bathroom. Drink a lot so not sure if that is why I urinate so much. Urgency seems to come on quick.
urinary tract infections seem frequent. Seems like every time I go to DR for something else, I seem to have one that I didn’t know I had.
(as of Aug-Sept 08) Hands don’t want to stay straight, feels weird and tight when stretched out. They tend to want to curl under .
(as of Aug-Sept)- Tender spots on scalp -feels bruised like I was hit and it’s a couple days later -tend to move around from spot to spot.
(as of Sept - persistent sore throat and feel like I can‘t finish breathing- sore throat is worse upon waking-lungs feel like I can’t get enough air into them.) NOTE: Subsided after Prednisone and asthma inhaler use.
(as of Aug-Sept) Chest feels tight like there isn’t enough room in there and upper stomach feels the same way. Some days I feel like my ribs are extra huge.
(As of Aug-Sept) Milk has been bothering me more. Get really bad cramps in upper stomach from milk and ice cream. Carbs are making my stomach bloated and cramped, even more so then before.
(As of Sept-Oct) Things in the house seem blurrier when I look at them now, like VCR clock, fan temperature.
(As of Sept-Oct) have noticed hands don’t shake as much anymore since I’ve been eating every 2-3 hours and spacing it out instead of going without eating.
(As of week of Oct 6) - hair is getting really greasy quickly.
(As of week of Oct 6) - eyes are really itchy and dry, then get watery because I rub them so much. Taking my allergy medicine and nasal spray, not sure why this is happening.
I feel like saying “I pay $700.00 a month for my insurance. I’m tired of the run around, I want everything done..MRI, Cat Scan, Xrays and every blood test you can think of!” lol

Here is what I have been Dx with and some blood work:
PCOS - 1989
Rosacea on face and armpits - 1990 (now just really dry skin on face)
Possible Fibercystic Breasts 2004 - Lumps found, but mammagram didn’t show anything so they said probably Fibercystic Breasts (they are lumpy! I can’t even do a self exam)
High C Reactive Protein (later was down) Taken 3-4 years ago
High Triglycerides Taken 3-4 years ago
Really high LH to FSH level - LH 44.5 / FSH 3.9 /3-4 years ago
Fibromyalgia ??- 2005-06
Carpel Tunnel 2005-06
Chronic Allergies 2005-06
High Trycligerides 2005-06
High Platelet Count - 451- Aug 08
Low MPV count Aug 08
High EOS count - 6.8 -aug 08
High ketones - 15 - Aug 08
Gallstones - Aug 2008

Thank you for reading my looong post! Hopefully someone can give some advice on what you think I have lolol
Sorry it was all over the place, my mind just goes crazy sometimes!

hellofromangie · 10-11-2008, 09:32 PM

Hi,

First of all you are right about the fact you are paying for the doctor's to help you. So do not be shy or reluctant about demanding the best care, because you deserve it.

As far as whether your primary care doctor can do all of the blood test, that really depends on the doctor. But my primary care doctor did do all of of my blood tests. And based on the blood tests, she referred me to different specialists.

Whatever you think you might have, than ask your doctor to please rule it out or in. That is what I did with my doctor. Tests that were important for me were to have my insulin level checked, along with my cholesterol, estrogen, progesterone, and thyroid. One thing I have learned about PCOS is that some of the symptoms can often times overlap with other health issues that have the same symptoms. That is why blood tests to rule in or rule out diseases are so important to help get the right treatment plan. Stay pro-active about your health, and do not apologize for taking care of your health.

Good luck with your doctor appointments.

Angie

juniorj · 10-11-2008, 10:32 PM

Wow how do u move about lol! no sorry no jokes intended!

First of all i want you to print out everything you have just wrote in that post , the symptons and what u know have been Diagnosed with!

When u go to the doctors show him this , make the worse things bold , by using the bold font of the italic or underline it or colour it red. Make sure he knows you have tried to sort things out yourself.

Can i sugges the following to help your life style (not saying its bad but it could make things easier , by way its into the early hours of the morning and my eyes are dropping lol)

- A good matress to help your body rest better though the night.
- Have your eyes tested throughly!
- Drink plenty of water and suck on ice cubes when you feel hot/dry mouth - this is a sign of dieabetes(spl?) so bring this up with the doctor! if u havent already!
- Get at least 8 hours of sleep!
- Have a warm bath every night with lavendar in the bathroom and cool shower in the morning with refreshing shower gel
- In the winter try not to use the heaters but hot water bottles , this will help u feel warm enough but not make u feel nausaus with it!
- Eat plenty of fruit and veg!
-Write down thoughts and feelings ( good for emotional side)
-wear sunglasses in the evening when ur likely to have headlights shining at ur
- Have a hour to unwind in the evening , good for the soul

I think thats all i can suggest , make sure u get to the doctor and keep telling urself u pay for this guy and he needs to help u!

Also im worried about ur
Eye issues
Dryness of mouth
Cold feet and hand
Fatigue

This sounds like kidneys/diabetes issues! highlight them! when u speak to the doctor!
Jess x

ivetastedflight · 10-12-2008, 02:08 PM

Jeez! I'm so sorry you're suffering like this. You should be on one of those Mystery Diagnosis shows.

Sometimes I feel like asking them to run every test conceivable, too, since I'm paying for it, but most doctors do not believe in doing that. They'd rather say you're crazy and send you to yoga or some crap.

Anyway, are you taking any psych meds? They are known to do MANY of the things you're describing. Some of those symptoms almost make it sound like advanced/chronic Lyme Disease. Some of it does sound like Diabetes. Some sound like some kind of neurological disorder. Wow. You are so right to write all that down and take it in. Most of that stuff just can't be explained away and it's not necessarily all related, either, which could make things a zillion times more complicated.

I hope you see a doctor who is willing to help you, and I hope you find some relief soon. Keep us posted.

TheGigglingFrog · 10-12-2008, 10:43 PM

((((hugs oceanstar)))))))

Congratulation on taking control of your health! High five to you!!!

In regards to how to work with multiple doctors, IMO I would start with your primary care physician and go from there, consider her home base, your right hand lady. Keep as much of your treatment in one place with one doctor as you can, but of course go to specialists as needed.

You have a really long list. I understand your concerns of being treated like a hypochondriac! I have found it useful to not use dramatic words like *extreme*, *severe* communicates the same message without the drama. (in Word, you can highlight a word and hit Shift+F7 and get the thesaurus to help with good descriptive words) Personally I see the appointments as business meetings and there isn't time for drama and emotions, just need to boil everything down to its essence and make a plan. I would also suggest grouping symptoms together under topics, i.e. gynecological, joint, psych, etc. You have done a fantastic job of getting everything down! IMO your meeting will move more efficiently if you categorize here in the beginning. Also you might consider breaking out symptoms that are related to Dx you already have, i.e. dry facial skin under rosacea (if that is the proper place).

You will most likely be questioned about your diet and exercise. Explain you have done what you can and are still learning, is it possible for a referral to a nutritionist and physical therapy (girl, you got a lot aches, pains, and booboos, so I imagine that fitness is difficult, PT will help you get going in the right direction). Explain that you know the importance of this and it would be better to not waste time on a discussion at this point.

Come with as many solutions as possible. You know you need to get your hormone levels tested for PCOS. Talk with your doctor about what she thinks needs to be investigated for your other concerns of fibromyalgia, MS, etc. and of course get your base of normal tests like CBC, Triglycerides, etc. and most importantly BLOOD SUGAR, GLUCOSE, DIABETES!!!!!

I would start your page to the doctor with your goals and solutions, then list the symptoms below. It is also possible to write a rational, but heart felt letter, to your new doctor before your visit, explain your concerns and goals and include your page so you can just get down to business at your appointment.

Healing is hard. It takes a lot of work. Be honest with yourself and your doctor on what you are willing to do at this point and what you need. You CAN NOT do it all at once, start with getting a good foundation under you and working from there... YOU CAN DO IT if you want it!

w/regards to your allergies kicking up and dry eyes... do you work in an office building that has recently kicked on the heating system with the onset of fall and cold weather?

I would love to hear how your appointment goes!

Oceanstar1974 · 10-13-2008, 05:20 AM

Hi, thank you all for the replies! I'm about to fall asleep but will reply more tomorrow. I will put it in sections, I started doing that then stopped but I think that will help. I also have more written down that I'm going to print out.
About Lyme: I get ticks on me like every month, they love me. Two years ago I had a rash on the back of my knee, DR saw it and said lyme. Test came back negative. I now hear that basic test they give you sucks, so I printed out something from Igenex website, theres is like 96% accurate, unfortunatly you have to pay upfront because they don't deal with insurance. So I'll try the other test again since I also hear if it's to soon it wouldnt have shown up.

I also have a list of tests that I'm going to print ..not going to give it to them but there is a couple that I want to bring up to get done.

"Explain you have done what you can and are still learning, is it possible for a referral to a nutritionist and physical therapy"
I actually went to physical therapy twice. Once was for my carpal tunnel and it didnt work, my arms still went numb all the time. The other time was for about 2 months, I kept going out of alignment and it wasnt working either plus I started getting bills in the mail becuase my insurance only pays 80%, so I stopped going. Personally I think something is pinching or slipped. I hate the fact they sent me to therapy and didn't even give me any xrays or anything! My insurance doesn't pay for nutritionist so that will be out of the question. They don't pay for anything that would be considered helping out the obese. They suck! lol I don't know why I pay so much a month for it.
I'm pretty sure I know how to eat, well I do know what I can't eat and that would be anything that has the word carb in it lol. Mostly breads, noodles, rice you know all the good stuff. The weight loss just seems sooo slow. 5 lbs since Aug 25th. I guess its better then gaining though. Ok I'm about to fall out, Thank you all for your help!

tmcurtiss · 10-13-2008, 11:03 AM

I agree about the Lyme disease. We have a family friend who had it. He has alot of neurological damage as a result. His speech can be slurred at times, he has trouble walking at times, memory loss and he can no longer drive. Sorry to scare you, but it is a serious disease if left untreated.

Another thing I was going to suggest is iodine painting. Look it up online. I just started doing it and the iodine practically disappears before my eyes. It is supposed to help all kinds of things.

Snow · 10-13-2008, 11:12 AM

Hi just had a quick look at your symptoms. Just thought have you considered migraine as some of your symptoms point to that which can trigger other symptoms. For example, the throbbing head and painful stiff neck, shoulders and arms can be a symptom of migraine as well as the flashing lights, pain behind the eyes (I get this with migraine), problems seeing, floaters, etc. Some people have migrianes without the head pain also. Or something like your back pain/problems (or neck) is causing problems with head/migraine and vice versa as they're all linked.

Also make sure the DR does checks on diabetes as a symptom of it is excess thirst/frequent urniation...and can also be linked to PCOS and the IR connection.

Just a thought...I hope you find the route cause of the problem and your DR gives you all the help you need

TheGigglingFrog · 10-13-2008, 11:57 AM

That is so concerning info about Lyme... I don't think we have too much if any in my area, so I am completely naive about it!

That stinks that your insurance doesn't cover any weight loss support! Make sure you mention to your doctor everything you have done and are doing to treat your issues as well as what you have done in the past that wasn't effective (either for you or your wallet) i.e. PT.

I forgot to say earlier, make sure you doc understands what YOU need treated first to help your quality of life. PCOS is easy to treat, you only have a handful of medications and you can decide before hand with good research what you would want. Remember your doctor isn't your coach or support person for PCOS, they will diagnosis it and offer you treatment options, and that is the end of their services. You have to get your emotional aspects handled through a psych professional or talking with the gals here or with your friends and family. YOU have to educate yourself through a lot of hard work, which it sounds like you have and that you have a solid head on your shoulders

I also forgot (I'm chatty and forgetful like an old woman) I have two bulging disks in my back and anxiety. Both are taken care of for me by Neurontin. You might want to ask your doctor about that instead of a narcotic. It is off label use since it is a seizure medication, but is commonly used, just like metformin is off label for PCOS

PuppyLove · 10-13-2008, 12:30 PM

Aww I Oceanstarr I feel for you hun. I can relate to quite a few of the symptoms you describe.

I would suggest the follow:

* get checked out for migraines (some people get migraine symptoms without the actual head pain ie fuzzy sight, shapes in front of eyes, flashing etc)

* definitely get full tests for diabetes

* get doctor/specialist to run full blood AND urine tests for everything under the sun including vitamin levels etc

I'm under the treatment of a Nutritionist now, yep it ain't cheap and it's sh!ts me to tears that it's not covered under Medicare here in Australia which means I can't claim anything, so it gets pricey BUT she is faaantastic and I feel we're getting to the crux of the problem for me.

Diet is a REALLY important part of treating all these symptoms, boring and annoying I know!! Some foods will literally make you sick, tired, depressed, anxious etc. It's amazing the effect some foods can have on different people. You may be allergic to wheat or yeast or gluten for example. Unfortunately (most) doctors don't take things like that into account, that's where Nutritionists are great, they look at things holistically rather than just give you more drugs which can actually worsen some of your symptoms!!

I really feel a lot better on natural supplements and restricting my diet. My mood is better, I don't get as sick as often, the constant severe fatigue isn't as bad etc. Perhaps you could try eliminating some things from your diet, especially sugar, and perhaps even wheat and gluten.

Please let us know how you go, and I agree you should print out your original post and take it with you to the doc!!

((((hugs))))

Oceanstar1974 · 10-22-2008, 07:55 PM

Hello! Sorry I didn’t reply back sooner, I have been so tired lately I don’t even want to get on the computer. Well I went to my neurologist on Wed the 15^th and he did a small exam looking into my eyes and made me touch my fingers to my nose. He said he didn’t think it was neurological (I’m not sure how a 2 second test and he could say that already?) So he said I should probably see a rheumatologist but since I was there he would do some testing. Here’s the list of what he did…

Erythrocyte sedimentation rate
Rheumatoid Factor
RPR (rapid plasma reagin) (is a screening test for syphilis!!)
T3 uptake
thyroxine (t4)
tsh 3rd generation
c reactive protein
lyme
Serum Protein Electrophoresis (SPE or SPEP)

I found a primary doctor and saw him on the 20^th. He said he was surprised they didn’t test other things and should have tested for Lupus (he saw my facial flushing) and I said the ANA? He was like yes.. (I love going in feeling at least slightly informed lol ) So he said (and so did my other Dr.) that I should get a rheumatologist (I have one but don‘t like him). So him and my allergy Dr recommended one, called him and he isn’t seeing new patients until Feb! I called more in Annapolis and they either moved to far away or aren’t taking new patients. Surprisingly as big as the Annapolis Medical Center is, there are hardly no rheumatologst. I found one that is over an hour away and doesn’t even take insurance! She said you file the claims with your insurance and pay the extra (mine is 20% if it’s not covered 100%) and they don’t care if you can only pay 10.00 a month or whatever you can afford. They sounded wonderful and it was one of the 3 my primary recommended. Unfortunately she moved from Annapolis to Bethesda which is far. So they are sending paperwork and info about their practice. My hubby said we don’t have money to pay out of pocket and blah blah. I still don’t know how the insurance thing works, hopefully they can tell me more at the first appointment. If I see it will cost me to much out of pocket, I will have to do something else

although I don't know what other type of doctor does similiar testing.
So I see them on Tue the 4^th, my neuro on the 5^th , my primary on the 6^th and my ob/gyn on the 11^th lol Busy week. I called my neuro to see if any of the above test have come back yet (they were taken in the same building about 7 days ago) someone is supposed to call me back. So since most were not neurological type tests, I might just cancel his appointment if they can tell me results on the phone. So that’s where I stand now! Basically everyone is recommending a rheumatologist because my main complaints are back pain, hand pain and fatigue. Out of all my symptoms, those are the ones ruling my life if you know what I mean!
I still have some tests I want done , which I’m going to list below. Since I’m going I might as well ask for them. Is there anymore tests any of you guys think I should ask for????

I have to laugh at myself, I wrote these down and forgot what half of them were for lol
vitamin deficiencies
Progesterone /Estrogen/and Hormone Levels
fasting glucose
ANA (antinuclear antibody)
anti-SS-A and anti-SS-B
HLA-DR positive glandular cells
IgG, IgA, and IgM
cortisol test - cushings

Oh yea my new primary was very nice, a little to concerned about the weight thing though lol. I’m sure you all know what I mean.I tried to explain that I eat about 1400 cal a day and try to exercise but the back pain and fatigue are so bad that it makes it hard to last more then 10 minutes. He did give me a NSAID (?) called Naprosyn for a month to see if it works. I noticed my back wasn’t burning as bad as usual when I did some dishes earlier. Also gave me some free prescription eye drops because on top of everything else, my eyes have gone really dry and itchy.
He also said “I heard you have to many animals and you smoke cigs! I looked at him funny and said have you been talking to my allergy doctor??? He laughed and said yea. Then I said I’m going to beat his butt lol. I love my allergy doctor, he is the kind you wish was your primary, he actually writes down everything you say and stays with you for like 45 minutes! My new primary also saw me for at least 45 minutes which I'm not used to so I'm happy with at least 2 doctors so far, hopefully I'm getting somewhere!
Ok …So that’s about it and thanks to everyone who responded!

TheGigglingFrog · 10-22-2008, 08:59 PM

Thanks for the update!!! It is always good to hear how things turn out, and it sounds like you are getting set up with some good doctors!!!

Oceanstar1974 · 10-22-2008, 11:52 PM

Ok my doctor called me and said all the above testing was normal (kinda surprised some are normal though, swore I had arthritis and my CRP has been high before) but my lyme was not normal. He said I have Chronic Lyme Disease. Not totally surprised but had put lyme at the back of my mind. Hes calling in a antibiotic for me tomorrow to take for 30 days. Thats all I know right now!

TheGigglingFrog · 10-23-2008, 01:54 PM

I bet it feels nice to have an answer, but what an unfortunate one! So does an antibiotic clear up Lyme?

OliviaLeigh · 10-23-2008, 05:13 PM

I am seeing a Rheumatologist at the Shady Grove Hospital. I got in w/in 6 weeks of calling to make an appointment. I haven't seen him yet, but you mentioned Annapolis, but I don't know how far anything is for you, but thought I'd let you know. Oh, I guess you said Bethesda is far, sorry

Lyme disease sounds like no fun. I've known people w/ it. Always tired, headaches, getting sick A LOT. Hopefully the antibiotics help. I hear they are strong though. I had MRSA Staph infection last year and those antibiotics put me to bed for 3 weeks...yikes!

NSAID is like advil, basically for inflammation/pain reliever/fever reducer.