I am looking for help right now.....

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Hi, I just wanted to intro myself. My name is Andrea and I am not doing well right now. I copied my health problems into this post. I am seeing a rheumatolgist right now who is very good, and tells me I definitely have something going on. Her first thought is Wegeners, but she has not confirmed it yet. The ENT told me he thinks I have some sort of Connectine Tissue Disorder. At the end of the list here I will update my newest symptoms, any input or advice would be great! I am a 28 yr old mother of three.

v Pain and aching in joints
Involving knees, ankles, toes, elbows, wrists, knuckles
Sometimes all at once, sometimes just arms or legs

Ø First began as a teenager (15), would wake up crying in pain with horrible, excruciating pain in my knees and ankles.
Ø Over the years it seems the pain has had flair ups, has gotten extremely bad, and then subsides slowly over time.
Ø During the past year, the pain has been quite severe, leaving me not wanting to move.

Ways I’ve tried to ease the pain:
· Ibuprofen
· Hot Baths
· Heat Pads / Compresses
· Massages from husband
3 or 4 times over the years Dr. H has ordered blood tests to check for (inflammation / arthritis)
· Reason for the pain (No Answers)
During this last pregnancy pain was so bad, when trying to explain to husband, I stated I wish I could be “deboned” like a fish. I felt at that time, it would be better to be immobile then to be in so much pain.
Other unexplained health issues over the years:
Pin Dot Bruising (like tiny blood spots)
· Both in groups and all over body
· 1st time was 18 months all over body
· Then numerous times of little groupings over lifetime
· Again in September, all over body. (Dr. was not concerned)
Nasal Issues
· Constant runny nose, sinus pressure, sinus infections.
Eye Issues
· (left) eyes watery, teary
Chest Pain
· In 2005, one morning had sudden extreme chest pain on left side, clutched chest, collapsed and was briefly unconscious. Taken by ambulance to hospital. No explanation, only suspicion of mitral valve pre-lapse, which was never found in testing.
· August 2007 more chest pain still no explanation
· October 2008, sharp chest pains went on for about a week. Had a ECG and Chest X Ray, Heart and lungs looked good.
Throat Issues
· In the fall of 2002, I lost my voice for 6 weeks, no tests could find an infection or reason for it. My voice started to come back on its own when I was delivering my baby, so I never made it to the ENT.
· Since January 2008 throat has been clogged / obstructed
· Needs to be cleared 100 or more times a day
· Had a few episodes where it feels like it is closing and I have trouble getting air.
· Feels like my vocal chords are being blocked.

Most recently, (thurs-today Sun Nov30) I have intense burning pain all the way down my arms to my fingertips and extreme weakness. I cannot pick things up very well with my fingers or hold my baby easily. My throat seems to get worse every day, but the distressing thing is the ENT says he won't worry about it until or unless I have trouble swallowing or breathing! I really don't want to loose my voice again for an extended period of time. Also, my creatine levels were very elevated a couple of weeks ago. Thanks again, and I look forward to finding treatment for all of this.

Andrea

[Sangye]

Wow, Andrea, these are some pretty nasty symptoms. It must be especially difficult to go through this with kids to take care of. There are a lot of things this could be, and there's no law that says you can't have two things going on at once. You didn't mention specifically what blood tests your rheum has done (ANCA? ANA? Lyme's?) Have they done a CT scan of your throat or chest? The recent symptoms in your arms and fingertips would suggest that a neurologist consult is in order.

One thing I've discovered having gone through numerous rheums and other specialists is that you must be proactive about getting answers and making sure your concerns are heard and acted upon in a timely manner (Timely to you, not just the doctor's appt book). It's not about being confrontational with them, but about being direct and clear. If it doesn't seem okay to you to wait until you have trouble breathing, then you don't have to wait. Listen to your intuition. Find another ENT, get a second rheum involved, and get more heads thinking. I made the mistake of remaining too long with several doctors who lacked expertise when things got complicated. (They also weren't up on the latest treatments) I was so sick, I just didn't have the energy to go looking for new doctors.

If you can get to one of the big centers like Mayo, Georgetown, Cleveland Clinic, Johns Hopkins, it's worth it. They can get you diagnosed and your hometown docs can follow the treatment plan. Most of them breathe a huge sigh of relief when you do that. Hope this helps.

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My ANCA came back negative, the ENT is ordering a CT scan of my sinuses, and I am going to phone his office and request that they do it on my throat at the same time. My rheum is doing many tests over this next month: ECG, bone scan, lung function, numerous blood tests. She said that I may have a muscle biopsy because of the pain and the elevated creatine.

[Sangye]

It's good to know they're acting on it, and those are all good tests to order. I think you're smart to ask for the neck CT, given the throat symptoms and also the arm/finger pain, which could be coming from within the neck. Best of luck!

[Jack]

Your symptoms sound only too familiar, but understanding of the disease amongst doctors is still patchy. There is also no hard and fast pattern of symptoms for the disease and I understand that there are other auto immune problems which present in a similar manner.

You need to check that your kidney function is still OK and get some biopsies of the problem areas. Mine were taken from sinus and kidney (neither very pleasant I'm afraid). This seems to be the only definitive test. I have not heard of Wegener's being detected from a muscle biopsy, but things are always moving on. In the meantime, the effects of a big dose of steroids might be interesting?

Above all, be proactive! When doctors don't understand a problem, they have a tendency to do nothing. My ENT consultant was like this and only took on board my sinus problems, ignoring the other symptoms. I've spoken of the consequences in earlier posts.

Good luck with your diagnosis, the sooner the better! Hope they soon get you feeling well again.

[andrew]

G'day Andrea...
You've certainly got some cracker symptoms there. I bet you're not one to do things by halves ;)

Are you on any steriods/medication other than the Ibuprofen? Perhaps steroids?

You mentioned that your Rheum is doing tests over the next month? Month?? Any chance of you putting your foot down and getting them to move faster? Don't wait around until you have trouble breathing or swallowing. Can you have a chat to the Rheum and politely suggest that you're done with waiting? You might stress that you have three kids to look after and waiting around until Mum stops breathing probably isn't an option for them as well :D Good on you for requesting the throat CT.

Will be thinking of you. Welcome to the club!

[Sangye]

I agree with you, Andrew (BTW-- great Support Forum, thanks!). Andrea, the tests you listed could be done in 1-2 days, add a 3rd for a biopsy.

Make sure they test for Lyme's, too. Those heart symptoms sound suspicious for it. My Wegs was confirmed by a biopsy of red dots I was getting on my legs. I didn't have kidney or sinus involvement, and it was too risky to biopsy my lungs, so we used the skin lesions. Maybe that's what you meant by "pindot bruises?" Might be worth getting a biopsy of one of them anyway. Very easy, painless, yields valuable info.

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I am going tomorrow morning back to the rheumatologist because of my last few days of EXTREME pain and weakness in my hands. Wish me luck, so far things have gone rather quickly for me. It was within a week that I went from my GP to the rheumatologist, who usually has a 1yr waiting list. I just phoned today, and my next appointment was Dec22, and they got me in for tomorrow a.m. My family and I leave one week from tomorrow for Disneyland, so we are really praying that I am doing a little better. This last weekend was quite scary, I couldn't even get myself dressed, let alone travel! Thanks for all the advice so far, it has been helpful.

[andrew]

Hard as it may be, it may be better for you not to put yourself through the strain of the Disneyland holiday. Excess effort/stress with your as yet undiagnosed illness might make things worse.

Sorry to be a wet blanket :(

I do hope your appointment results in a breakthrough though! Good luck!

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I made it to my rheumatologist at 11am today.....
During the time in the waiting room, my hand (the muscular section on the palm if the hand where the thumb is joined) began spasming. It has continued to spasm all day now.....weird, I know. I have not been doing anything strenuous because of the pain and weakness I have been having.
Dr. is sending me to a different ENT, one whom she routinely refers to who is very good with autoimmune diseases. She totally agreed that it is quite extreme to wait until I have trouble swallowing or breathing (which I do have at some times when my throat is so clogged) to look down into the throat. I told her that I really do not want to lose my voice again, as I did 6 years ago. This ENT will be looking at my throat issues....an answer, thank you!
Now my burning pain down my arms, and the muscle spasm: she is sending me to a neurologist who specializes in muscle myopathies. She is concerned about this since my creatine level was 800+ a few weeks ago.
I will still be having an echocardiogram, lung function test, and bone scan. So we'll see!
She told me to continue taking Tylenol Arthritis until she can completely diagnose me. I am breastfeeding my 6month old, so that has been a factor in deciding medications. I am going to really take it easy on our trip and rest up alot before. I know the smart thing would be to cancel, but we have 2 little girls who are SOOOOO excited, that I cannot be the one to break their little hearts:(.

[andrew]

Looks like you have some attention! GREAT!! :D:D:D

Yeah, I hate the look on little kid's faces when you have to disappoint them and I don't have any kids so I can only begin to imagine how you must feel :)

Well, as you say, rest up as much as you can and take it easy! I do so hope you get a diagnosis and start getting well again soon. It must be hard for the family too so see you so sick and not be able to do anything about it. That's one of the things that upsets my wife when I'm sick or having a flare.

[Sangye]

Great news that they're taking it seriously finally! I hope it turns out to be something easy to diagnose and to treat. You never know-- there are a number of things that cause crazy, terrifying symptoms, but once they're discovered are quite routine to correct.

A couple suggestions for Disneyland. First, write down both a detailed history and a wallet-version Emergency Card. Keep one copy of each on you, and another with your husband. My wallet Emergency Information has my full name, address, phone, current conditions (diagnoses), past conditions/ treatment that may affect you, current medications and doses, risk factors (allergies, on immunosuppressive therapy, etc....), doctors (name, location, phone), several emergency contacts. Make sure to indicate that you are nursing.

I had kidney stones a couple months ago and was completely unable to speak to the ambulance guy due to pain. I pointed to my emergency card. He had everything he needed to protect me and give the ER the heads up.

For you, Andrea, it's more complicated since you're not diagnosed yet. That's why you need the detailed history. Please don't think that since your family will be travelling with you, they can provide the info. You might be separated from them when you need help. Keep the info on you.

The second thing, is to sneak in bits of extra rest during the trip. bring a lightweight, foldup camping chair to sit in while you wait in line for well, everything! That can save you lots of energy and might keep you on the trip. Nap when your girls nap, or at least just lay down. Go slower than you usually would. Burn like coal, not like paper. Have a great time. :)

[andrew]

Burn like coal, not like paper.

Great advice! Another great post, Sangye, keep up the good work :)

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Hi all,
So tomorrow I go for a bone scan. I am also going to phone my rheum. office to leave a message for her about my purpura marks. There is one on my leg ( I probably have over 100 on my body which are small) which is larger and raised, more like a skin lesion. I guess I think it could be biopsied better than the others. Since we are having to hang around the hospitol area for 2-3 hours after getting the dye injected for the scan, I am going to see if she can do a biospy on that spot while we wait. I have been drinking a "Traditional Medicines" herbal tea which has helped my throat and voice a little bit, not cured, but alleviated a bit of the frustration. It has slippery elm in it. Thanks to everone for the support so far! By the way, anyone in BC Canada, in m y rheumatolists office there is a information sheet for a Wegeners support group. If I am diagnosed I plan to go. I did notice someone on here from Mission, I am in Maple Ridge which is 20 minutes away. Might be nice to meet up for coffee sometime.

[Sangye]

Best of luck. :)

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Oh, I also found one of those tiny camping folding chairs. It is so small it makes my derriere look extra-humong:pous! We can slide it underneath the baby's stroller when we are walking; great tip!