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Sjogrens Topics => Living With Sjogren's => Topic started by: Tinker on April 11, 2013, 07:33:50 PM

Title: You aren't going to believe this...lymphedema followup blew my mind
Post by: Tinker on April 11, 2013, 07:33:50 PM
I don't know whether to cry or scream or what but here's how my visit went at the Lymphedema Wound Clinic today.

When I arrived I took a look around and everyone there had one foot on a banana peel.  I thought they would send me home and tell me to come back for Mon, Wed. Fri. for massage treatments, cause I didn't look that sick at all.

The doc comes in , takes a 2 second look and says:  Well, you have lymphedema, venous insuffienciency, and hema something or other which means I have deposits of protein and serum that has colored my skin with tiny brown dots.  Honest, I could barely see them.  He said your feet are cold and you have swelling up into your calves.  There is no question about it.

(I thought I might have cellulite in my calves, but he told me on someone of my size Petite 8, that that isn't the case.)

And Heres the TREATMENT:
1) come in 5 days /wk for 3 hrs./day for manual massage, peripheral vascular leg pumping for 1 (maybe he said 2 hrs./ day, and then they will wrap my legs with thick ace bandages that I must wear for 6-8 wks 24/7.

WHAT?? 
And since lymphedema isn't curable, once I get to maintenance, I must pump my legs every day for 2 hrs./day for THE REST OF MY LIFE.

My quack cardiologist blew off my questions about the edema.  Told me not to worry.  Said it was nothing. 

All this is the icing on the cake to other events of the day:  the rheummy called and said I need an MRI of my neck as the x-ray that was lost for 6 wks revealed herniations and pressure on nerves that have made my fingers and palms numb (trading sides.) for the past 7 mos or so.

The lymphedema doc says I need to take the DVD of peripheral and arterial doppler test to another cardiologist and he will re-read the test.  I'm wondering if we fix the venous insufficiency if that will help the lymphedema?? And the treatment:  passing a tube through the femoral artery to ablate the vein.  Great.

The neuro I will see on Mon. listed on one of my clinic visits that I have a lesion on a nerve in my left wrist. He never told me this or treated it.  I only noticed it as I was getting this ready for the rheummy.    I'm livid. 

I feel like the docs have totally failed me.  I had to fight for follow up.  I had to fight for a diagnosis, all the while directing their dumb butts and suggesting what should be done next. 

 After all the lab tests and proof of illness, I still get labeled with this "it'a all in her head she's a nut case " diagnosis. 

My high school friend died Mon after having left arm and shoulder pain.  She went to an Emergency Clinic in Galveston , they gave her a cortisone shot in her shoulder and sent her home.  She made it to the front porch of her house and died, where her family found her.

It's just too much.  I am so disillusioned with medical care today.  I don't know if any of this made sense.  Sorry to vent this way. 

Please ladies, don't give up and do your research.  If you know something is wrong, keep at them.

And now my symptom du jour:  glandular tenderness in my neck for the last 4 wks.  What's happening to me now?  More research.  I must be in a flair.

No Florida Destin beach vacation May 13th.  I won't be out of my mummy costume by then.  I'm trying to laugh to keep from crying.



Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Tinker on April 11, 2013, 07:43:24 PM
I inadvertently erased a sentence that said the neuro diagnosed me with "undifferentiated somatoform disorder" or the "she's a nut case pay no attention to that crazy lady" diagnosis.  Never mentioned it...just read it on the summary of the visit.
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: irish on April 11, 2013, 09:13:23 PM
I would go to the dang doc who labeled you a somatoform disorder and tell him that when his wife gets sjogrens "call me" and I will walk you through the disease cause you wouldn't recognize it if it hit you in the face. Sorry, I could not resist that.

Yes, I, too, have been labeled a nut job and it was for probably 40 years before I finally got diagnosed. It is hard pushing through all this crap to get anyone to listen and understand. One time hubby and I drove home from an appt and he said to me that I "would probably just have to die" as no one was going to do a darn thing. We cried all the way home. It is not fair and I don't know what the answer is except: I have been known to go to the powers that be at my clinic and complain loudly and with feeling. They listening (with another person there as a witness, of course) but I know that I got through to them because I have not been ignored again. I like this clinic and the doctors I see there but one doc really made me mad when he told me the reason I was so short of breath after walking down to get the mail is because I was "too fat". ( was soon after diagnosed with myasthenia gravis) He also told me that my diagnosis of Mycobacterium kansasii was not right even though I had cat scans of lesions on my lungs, liver and spleen.

Somehow, life with chronic disease can be a royal battle. The only advice I can give you is to pick the doctor you trust the most and go see him and ask him for advice as to where to start to address all these issues. It sounds like your doctors are not working together for your good health. I still have that happening to me and need to make a change in one doctor. Sometimes we get so overwhelmed with all this medical stuff that we are ready to explode trying to float our ship.

It helps to take a couple of days off from dealing with all this stuff and take a breather to regain your sanity. Also, with the lymphedema diagnosis and no reason given (for sure) I would ask someone if it is possible to have enlargement of the lymph nodes in your groin that could be causing enough pressure to prevent good flow in the lymph system. Remember that with sjogrens we can have enlargement of our lymph nodes anyplace in our body with some resultant weird symptoms. My theory is to check out the simple possibilities that are less invasive before heading to the more complicated stuff . Some doctors can't look at the big picture and they always need a cat scan cause they don't have the ability to think outside the box. Good luck and let us know what you find out. You are a very strong person and you will make it through this ordeal. Hang in there girl. IRish
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Cassi307 on April 11, 2013, 09:45:08 PM
I would go to the dang doc who labeled you a somatoform disorder and tell him that when his wife gets sjogrens "call me" and I will walk you through the disease cause you wouldn't recognize it if it hit you in the face. Sorry, I could not resist that.

Yes, I, too, have been labeled a nut job and it was for probably 40 years before I finally got diagnosed. It is hard pushing through all this crap to get anyone to listen and understand. One time hubby and I drove home from an appt and he said to me that I "would probably just have to die" as no one was going to do a darn thing. We cried all the way home. It is not fair and I don't know what the answer is except: I have been known to go to the powers that be at my clinic and complain loudly and with feeling. They listening (with another person there as a witness, of course) but I know that I got through to them because I have not been ignored again. I like this clinic and the doctors I see there but one doc really made me mad when he told me the reason I was so short of breath after walking down to get the mail is because I was "too fat". ( was soon after diagnosed with myasthenia gravis) He also told me that my diagnosis of Mycobacterium kansasii was not right even though I had cat scans of lesions on my lungs, liver and spleen.

Somehow, life with chronic disease can be a royal battle. The only advice I can give you is to pick the doctor you trust the most and go see him and ask him for advice as to where to start to address all these issues. It sounds like your doctors are not working together for your good health. I still have that happening to me and need to make a change in one doctor. Sometimes we get so overwhelmed with all this medical stuff that we are ready to explode trying to float our ship.
Tinker it sounds like you had a pretty overwhelming day. It's great that you finally have someone who validated everything that you already knew. It is so insulting to have someone label you as making things up. I love what Irish said when that md labeled you with somatoform disorder.
I know that over the years I was told my complaints were "too vague" or didn't make sense to my now former primary. I remember the look on her face that made me doubt myself and pushed me into living with chronic pain.
Irish is right. Take a few days to relax before you throw yourself back into dealing with this latest challenge. I am so sorry to hear that you are going through this. I hope this treatment brings you some relief and that someone somewhere can help you find the cause.
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Tinker on April 11, 2013, 10:47:30 PM
Irish, thanks for your input.  Glad I read it a second time cause I missed the last paragraph.  I DO HAVE tenderness in my groin area on both sides.  I'm so glad you mentioned this.  I thought I was sore from a little yard work but maybe not.  Maybe it's a ligament or tendon ? but I will certainly mention this. 

Touche, my dear about my neuro!  ;) I would love to say that.  I am meeting with the neuro PA Mon. and it took my 6 wks or so to get that appt.   I plan to ask her what this somatoform disorder means.  I know, but I want her to explain it to me.  And then, I plan to present each lab test to verify all complaints.  I intend to ask her to ask him to remove this diagnosis from my chart.  He'll be angry, but I'm quitting him anyway, unless he rectifies this.  Not telling me about the lesion on my left arm is a BIG deal.  Left untreated, I could lose use of the entire hand.  I intend to ask about this as well. 

I'm getting a new GP as she is overwhelmed and can't handle my complicated mess. My rheumy is great..I'll ask him.

Cassi:  Thanks for your reply.  Yes, I have already  forgotten about the whole mess and busied myself with other things. Just can't think about it.  We cancelled our beach vacation today.  Boohoo.  Can't go to the beach with ace bandages so we'll have to adjust.  Thanks for your kind words. Much appreciated.  :)  I'll get through this one day at a time . Between all of us we could write a book., huh?   :)
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Momedic on April 12, 2013, 02:46:21 AM
Holy cow, Tinker! What a day...  You are very strong indeed!  Who could go through a day like that and not be???   8)  As Irish stated, the lymph system is a very complex system and can cause some very strange issues, depending on where the "clogged node" may be, or the irritation may be located.  The advice of giving yourself a vacation from all the medical mess is an awesome idea!  I do that frequently!  However, today is not going to be one of those days... I sure hate when doc's dismiss complaints without even "listening"!  Makes me feel like I am not even human!  I, too, fired my GP because she was overwhelmed by my complicated case!  She said the reason for my rapid heart rate after eating, walking from one room to another or just about any activity was my "acid reflux"!!  Really??  That's when I knew she was in over her head.  I have been dealing with acid reflux for 30+ years... this is NOT acid reflux.  Anyway, gotta keep them docs on their toes or they seem to lose sight of what is important and what is real. Keep the faith and stay strong and never give up!  My Mom always tells us, "Life is great, if you don't weaken"! She is a very wise woman, indeed!!
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: irish on April 12, 2013, 11:34:13 AM
Tinker, I forgot to mention that there are also lymph nodes deep in our abdomen that can be responsible for things also. With the autoimmune disease a cat scan to check out the status of all your lymph nodes would not be a dumb idea. Do a search for images of the lymph system and location of nodes and you will see how many there are and where they are located. This system is something that is sort of forgotten at times. Good luck, girl. Irish
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Tinker on April 12, 2013, 08:15:58 PM
Thanks, you guys. 

I slept on it and made an executive decision.  To heck with ruining my once a yr vacation.  The doc said there was a chance I could finish up the 6 wk treatment if 3 wks if I respond to treatment.

So, I'm going to the beach!!!!!!!  I can put those ace bandages back on after I leave the beach and take along my leg balloons and pump everyday I'm there.

That is just no reason to miss my beach trip.  Right?  Life is short, YOLO, so I'm going for it.

My husband and I booked a great place in Panama City today and I'm GOING! 
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Nancy60 on April 12, 2013, 08:37:30 PM
Good for you.  You definitely should go. Do the best you can with following the protocol but you can get back on track when you get back. I'm glad you're not letting this disease control you.

Nancy.
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: eyeamdry on April 12, 2013, 10:12:11 PM
Tinker, as one who has taken one ruined vacation and cancelled a cruise within the past 6 months, I say HE++
YEAH!!! GO GIRL GO.  My vacation that was ruined was because I didn't know I was sick and running low on oxygen.  You know what's wrong and how to take care of it.  I hope you have a wonderful time.  Lucy
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: susanep on April 13, 2013, 12:13:45 AM
I have been reading your post Tinker, and sorry for all you are going through. I also agree to go on your vacation. Having a break from it all will be good for you.

susanep :)
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: CMNK12 on April 13, 2013, 06:28:40 AM
   Have a wonderful vacation Tinker, you deserve the best time ever. I hope the weather is amazing and the food is fabulous. I love the beach. I love to watch all of the people having fun and being carefree. ;D   CK
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Carolina on April 13, 2013, 06:59:51 AM
Have fun Tinker,

And when you get home, can you tell me WHY you have Lymphedema?

I have missed what caused your problem.

And that diagnosis of somatoform disorder is totally wrong.

With Somatoform disorder you have problems that don't actually have a physical cause.

Lymphedema is real problem.  A difficult, on going and very serious problem.

He's just using it to say "She complains about problems and I don't like it!".  Tough.

The guy needs a good shaking.

Sigh

Keep us posted.

Hugs.

Elaine
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: gardenlover on April 13, 2013, 07:23:19 AM
Sorry, going through a time with my eyes right now so i honestly couldn't read all of the responses. However, i thought there was surgery for this condition as a long-term solution?
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Tinker on April 13, 2013, 08:26:19 AM
I know I'm a little bit crazy, but I'm going to the beach just the same.  Thanks for supporting me in this decision.  I know traveling 1/2 way across the US is going to be difficult but we are breaking the trip up into 2 driving days getting there.  Same on return.

Elaine, no one has told me why.  Go figure.  So, as a nurse, my best guess is that the venous insufficiency has caused this.  The valves in my vein are enlalrged and the valves can't close on each side of the vein, therefore, the blood stays in the lower extremites, causing the swelling.

Wow, my groin on each side are very tender as well as my neck is very tender.  I can't walk without feeling it so I'll have the PA check it on Mon. She'll probably blow it off cause they don't appear to be enlarged.  They're just tender.  ???

Gardenlover, about your question regarding surgery:  it is considered for the more serious cases.  The info I printed out says treatment can involve these things:  sclerotherapy (injecting a chemical to destroy vein (s), ablation (catheter insertion to burn out the vein, vein stripping, bypass, vein valve repair, angioplasty and stenting.  I'm not there yet.  However, the tech who did the doppler test said I needed the ablation. 

Nancy, Lucy, Susan, Elaine, gardenlover,, Carolina, and CK:  thanks, thanks so much for your support!  Can't thank you enough for your kind words and support.







Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: irish on April 13, 2013, 01:26:00 PM
Tinker, I guess I am still concerned about your lymph nodes. I don't get very enlarged when I am having lymph node issues---never have lot other people. I can feel the pressure inside though. It as though I swell up towards the inside and not to the outside. If you have any sign of infection (hoping that you don't) I hope you will have ER and urgent care available for easy access. Hoping all goes well on this holiday. Good luck. Irisih
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: aussie mum on April 13, 2013, 03:00:08 PM
Vindicated!

While it's not good that you have been diagnosed with a new condition, I totally understand the feelings that YOU know you are sick and not a nutter like your useless Doctor stated.

I would be writing the offending Doctor a letter, telling him how he has failed in his duty of care with your treatment and you are glad to fire him as your doctor. It might be worth sending a copy of the letter to his medical association too.

I have had similar experiences and it is a shame we need to feel grateful when a Doctor listens to and believes us, when that's what they ALL should do.

I hope all goes well with your treatment Tinker and enjoy your holiday - there's nothing better than a trip to the beach.
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Carolina on April 13, 2013, 04:08:34 PM
Ok, Tinker, have a great time at the beach.

Be very vigilant, don't stay on your feet.

You can get cellulitis in your lymphedema and that can be very very serious.

Just saying......

Not to rain on your parade.

And you know how to take care of yourself.

Is this a LONG car trip?  lie down with your FEET ABOVE your heart.  In the back.

And get out and move around a bit.

Hugs

Elaine



Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: jazzlover on April 13, 2013, 05:13:58 PM
Tinker... Like I said .. my friend has it and she is 100% better after many weeks of physical therapy (which did involve wrapping, etc)... So there is HOPE!!

Have a great vacation!
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Tinker on April 14, 2013, 04:34:35 PM
Hey, everyone.  Thanks once again for your positive comments.

Irish:  I am concerned about the groin pain and neck tenderness.  It was extremely helpful that you told me that you can swell on the inside and  signs of enlargement may not be visible.  I always feel bad so I can't go by that.

I am probably going to have to revise my game plan at the neuro pa tomorrow.  Since this is a major concern, I have to go in with hat in hand.

I hope she takes it seriously and suggests the MRI/CT scan.  (when I had a bad reaction to breast implants due to br cancer, the doc finally gave in and did a mri and it was after that that he consented to remove the implants. The test showed enlarged lymph nodes all around the implants.  I KNEW something was wrong and finally got it taken care of.  It's always a fight. I'm getting so tired.

I'll be checking my temp., and getting another appt with my rheummy.  If u think of anything else I should do, please tell me.

We will set up the car so that I can put my feet up higher than my butt, and take lots of walking breaks.  I've got to tell my identical twin sister that she has the same thing as me.  She's been under a lot of stress with buying and selling her house and I knew she couldn't handle this news. 
I'll let you guys know what the pa says.  I'm not expecting much.
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: ellenkerr on April 14, 2013, 06:10:44 PM
Wow!   I'm pretty new to these boards but reading all of these posts  have truly inspired me to remain strong and continue being an advocate for my own health.  I would have never let doctors treat a member of my family as bad as I have allowed myself to be treated these past few years.  Instead I allowed them to dismiss me and make me feel bad about myself as if I were the nut job they made me out to be.

You are brave and strong and I truly want to thank you for the inspiration.  I've been trying to feel better for the past 20 years and I've been going downhill very fast these past 2 years, and decided I'm not going to let uncaring doctors who don't listen shorten my life.  I made my fist post on the diagnosis page today, so if you have any insight, I'd like to hear it.  I hope better health is in all our futures.  Both of my daughters and their families are taking beach vacations this year, both at different times.  They've invited me to come along, and I have been hesitant due to my health and possible lymphoma hanging over my head.  I decided that staying home or getting treatment could wait a week or two.  What can't wait is the warm white sugary  sand, cool ocean breezes, the bright sunny blue skies, the sounds of the crashing waves and sea gull songs, the smell of the salty air, and watching the grandchildren playing  and romping in the surf.  Heck!! I want to romp in the surf, want to join me?  Lol
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Carolina on April 15, 2013, 04:57:27 AM
Welcome, Ellen,

go for it.

We have to plan pleasure into our lives.

Balance is all.

Keep us posted.

You can sit in a lawn chair at the edge of the surf.  I discovered this two years ago.

Because of my Peripheral Neuropathy (nerve damage in my legs) I can't stand in the surf, or even walk very well on the sand.

But I CAN get myself to the surf, and sit in a chair, with my feet in the waves, and my heart soaring!.

Keep us posted.

Hugs

Elaine
Title: Re: You aren't going to believe this...lymphedema followup blew my mind
Post by: Tinker on April 15, 2013, 07:28:54 AM
Hi Carolina and Ellen,
You two are the bomb!!

Yes, I agree with both of you.  This lymphedema didn't get me yesterday.  It started a long time ago.  and to delay my joyful trip would be wrong.

Ellen, you could write a book about enjoying life and breathing in all the joy and happiness we can get.  I am glad you are going to the surf and have grandchildren to enjoy.  After reading about your sstory, I am convinced I made the right decision. 

And your kids know that you are struggling and will accommodate your needs. 

BTW, I hope the lymphoma ? is resolved in your favor.  Surf and sand, better than any drs treatment!   xoxo