A Little Discouraged

[Maxine]

Well, as you know a lot has been going on. I think I'm starting to get a handle on some of the medical issues, at least as far as getting some decent doctors lined up. I know my attitude is cynical with docs, but when you have seen what I've seen, you'll understand why. So, sorry in advance to all the good doctors who do "get it". That just doesn't mean getting POTs/dysautonomia/EDS, but just getting the patients, and having the courage to set their EGO aside, so the mind is open and receptive to learn from them.

Last year we decided to do the Barium lower GI with double contrast, both air and barium. We have a family history of colon cancer, and my brother passed away after a long battle from Colon cancer in Feb. My mother died almost two years exactly before that, but we don't know where her cancer started, only that it was all over her abdomen. Her brother passed away two weeks after she died, and we know it was colon cancer. My Aunt went to Las Veges to take care of him on his last days. The lower GI showed multiple diverticuli in the large intestine/colon, so much so that almost the entire colon was covered, only sparing the ascending colon. When I went to the NIH EDS study they were concerned about possible inflammatory bowel disease, and said I should get a colonoscopy, but with a pediatric scope to avoid puncture and injury due to my EDS.

SOOOOOOOO, did the EDS do this, or did years and years of suffering from chronic constipation do this? Are my intestines so stretchy that they just have to fill completely up before my body gets the signal to "go"? Is this why I had issues with constipation so long. Is this why I have this very large diverticuli in small bowel/duodeum-----3rd and 4th section? I've had this big one for many years, since my 20s. There have been two flare ups with this diverticuli, and the last one causing some "fat stranding" what ever that means. My guts feel so full all the time it's difficult to eat, and sometimes I eat the wrong things because thier easier to digest. Foods that are god for me make my guts more miserable.

The spine issues continue to get worse, and I can feel how loose my neck is near the top near my skull---it's been this way for over 5 years, but is getting worse by the day. The mid thoracic spine hurts so much from the desiccated disk on t-8-9 it takes my breath away, as well as the upper thoracic spine. I've been having more frequent headaches, and they are always near the back of my head, and more severe throbbing down at the base of my skull on the right. I know the vertebral artery is enlarged there, and along with the EDS affecting my vascular tone, and the instability-----------this can't be good.

Well anyway-----------I've been trying to get this colonoscopy done, but my "neurological issues" seem a little more intense, and I think it's affecting my breathing more so at night, and also making it more difficult to clear my lungs after this terrible flu I had in Mid March. I don't feel stable, and in fact this flu affected me so much I have had BPs lower then I ever had. even sitting. It was insanely low during the flu, and I couldn't get the fevers to go away, even with tylenol. A couple weeks ago I was going down my basement stairs and fell off the last step, etiher from twisting my ankle, or near syncope. I've had near syncope so often, that it's hard to tell. I think it was more from the shock of my ankle flopping over. I was fortunate, as I didn't break anything, but still have a sore right knee and left ankle.

Now I see my PCP this week, and don't know how to begin without scaring him away. So far he's been taking all these issues seriously, but I still worry I'll lose another doc. We went down to see my orthopedic surgeon on March 3rd., and he said I need to have a fusion on c1-2 to stop the instability. At least it's beeter the a cervical/cranial fusion, but will this work? I would still have some movement up there, but he said it would stop the excess movement. His words were, "there's no stopping you guys", meaning people with EDS have TOO MUCH range of motion, and the cervical/cranail area is a dangerous area to have this. He's not pushing me, but stressed that a small accident of any kind, even slamming on the breaks could cause permanant damage, OR WORSE. When I fell off that last step in the basement it affected all of this, and I'm just now feeling a bit better, but still very wobbly up there on upper back and neck.

It's been really difficult sleeping at night, and have a lot of trouble on my side due to my slipping shoulders. I also have the occipital slipping----------you can feel and hear the click, click, click......... it's kind of a nightmare, but I have learned our family is strong when dealing with physical pain, and limitations.

It feels like my seems are coming apart in the literal sense. I don't know how much longer my body can hold up like this, and I don't know where to begin. I almost feel like I should go to John's Hopkins to get things further evaluated, as I think my EDS is affecting a lot more then we thought. I have a great EDS doctor, and I plan to hang on to him. He's an excellant geneticist, but I think I need to go somewhere where my neurological and digestive isssues will be taken more seriously. So far there isn't anyone locally that has a clue on the seriousness of all this. It's pretty dang serious, and I'd bet a lot on that.

I just want to enjoy life a little more. I'm tired of feeling overly full, numbed out, and full of pain daily.

Any ideas on how I should relate this to my PCP? I'm going to get the results of my urine tesing on hydroxy proline and heavy metal levels. He's a pretty great guy, and is on the same page as I am with the ignorance in the medical community on just about anything you can think of.

Maxine :0)

[firewatcher]

Maxine, honey, just hit the print key and hand your post to him.

(((((((very gentle hug)))))))))))

Jennifer

[janiedelite]

Wow, Maxine. Your pain (emotionally and physically) was so evident as I read your post. But you really articulated your various concerns very well. Maybe you could print off this last post and use it as a guide when you see your doctor?

I understand your fear regarding the family history of colon cancer and your progressively worsening GI symptoms. My mom has carcinoid syndrome and as you know many of my POTS and her carcinoid symptoms are the same. She got sick when she was in her 30's too. Even though there's no evidence of tumors on my scans right now, I will be getting regular blood draws to make sure I stay free of carcinoid. I'm a nurse, and have seen people through all stages of their cancer/disease process. It's so hard to watch my mom walk that path, too. It's understandable to be anxious about the future, but please know that your life is a blessing to those around you. I really hope you can get some answers and maybe some treatments that will let you live with less pain.

Take care, Janie

P.S. I just read Firewatcher's post... looks like she had the same thought about how well you worded your original message.

[tinkerbella]

Well said everyone, I'd hit the print button. I always bring a list of notes and last time I brought the letter I had emailed her with more thoughts I thought of afterwards. She actually liked it as it saved us both time. Do it, you'll be glad you did! Good Luck, and I'll buy us a round of v8 juice as it's time for happy hour here. LOL!

[Maxine]

Thank you so much for your support and replies.

Good Idea about printing the post! I can't on my lap top-----well I could, but I don't want to jump though the hoops getting this lap top connected to my printer. I copied and pasted, and will send it to my husband's e-mail so he can print it from the desk top computer down stairs in the basement.

I think the first thing to get past is this colonoscopy, and find out why I'm having an increase in neuro symptoms----and if it will make having the procedure even more complicated then it already is. My respiratory issues have been worse, and that's my concern. I think the spine compression is causing the breathing difficulties, as the t-8 disk is completely desiccated---(bone on bone). Brain stem compression also causes respiratory problems.

Janie, it breaks my heart that your mother has do deal with such a serious illness, and I pray she has remission, and can feel better. Thank you for your kind words everyone, it really helps boost my spirits.

Take Care,

Maxine :0)

[tinkerbella]

Maxine,

I just wanted to let you know I was thinking about you this afternoon. I hope you're spirits are lifted today. Even though I'm new posting here I can feel the

that people really care for each other. I feel blessed that I finally figured out how to post and started posting to others who can relate to me.

When I first joined I used to peek in, read and get out quick, and cry. I thought someone had been looking into my windows and writing about me. I was scared silly. Now I'm ready to take charge and control of as much as I'm able to, one painful step, lots of breaths, and many heart beats at a time. GOOD LUCK at your appointment. We have to do whatever helps us make our life less complicated. You'll be in my thoughts and prayers.

[Broken_Shell]

Hi Maxine,

I am sorry for all of your pain. I agree with the idea of printing your post and handing it to the doctor. I know what you mean about being afraid of loosing doctors though. I feel that way a lot - I find a new doctor who seems to understand and believe my symptoms, and then they see my huge stack of medical records and history of multiple physicians and tests and dismissals of my symptoms before I was finally diagnosed with dysautonomia and I think that they begin to doubt me. Or, I develop a new symptom and then feel like no one wants to look into it because of everything that I had done in the past, even if I didn't have that symptom when the previous work-ups were done.

I send support and good wishes your way. Keep us posted and remember that we are keeping you in our thoughts and understand what you are going through.

~ Broken_Shell

[Maxine]

Went to PCP yesterday, and I think he's a bit overwhelmed. He believes my health issues-------BUT wonders if there isn't something else going on with such low vitamin D @ 5. That's low, low. He asked what has been done about it, and I told him they put me on high doses of vitamin D, but when I take it I get flu symptoms. He's wondering why an underlying problem hasn't been investigated. My hydroxyproline levels in my blood were -0-! This was a couple years ago, and my PCP has now ran a 24 hour urine on it to see if levels are high, like I'm excreating too much.

He doesn't want me to get a colonoscopy right now----he said I'm not stable. Maybe because lower GI was nagative for tumors, and he feels it can wait a bit longer. The radiologists wasn't sure if I had some tiny polyps, and felt it was more an issues of not being fully cleaned out. Even though I ran clear, it's possible some could have gotten caught in the multiple diverticuli, and gotten loose when they pumped in the air and contrast---then turned and twisted me all over the table.

He said there's no sense in going anywhere locally about my instability, as I know more then they would know. The trouble is MRIs are only seeing the pannud growth on odontoid bone, but not the instability. NIH docs, NY docs, and the orthopedic surgeon said I have rotational instability. I know I have it, as I feel it daily----there's no question. However, PCP is afraid of my having major surgery, and it not fixing the problem.

Regarding the drop attack, or whatever it was when I fell off the last basement step like a sack of potatoes------well, now he's wondering if I might have some NCS issues, but it may be related to vertebral artery being pinched, or brain stem pressure.

I'm just more lost now. He was talking about going to John's Hopkins for further evaluation of spine issues, and maybe having the new 64 slice C-scan they got at one of our local hospitals.

Maxine :0)