Dealing with more than one immune disorder
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May 7, 2017 at 10:19 pm
Hi — I’d like to hear from any others who deal with multiple disorders being treated by multiple doctors. It’s driving me crazy, and I feel as if I don’t have a single doctor overseeing all my problems and looking out for my interests. This is a long story. Please bear with me!
I was diagnosed in late December with hypogammaglobulinemia as well as CIDP. I had been struggling for a year and a half to recover from major pelvic and spinal fractures and surgery that left me with a pelvis full of wicked long surgical screws and rods and unrelenting pain. I was getting worse, not better — increased pain, loss of balance, deadly fatigue — but my pain management specialist (in the spine surgeon’s practice) kept telling me I was just “deconditioned” and needed more PT and exercise.
Finally I insisted that my pain doctor refer me to a neurologist.
At the same time, my primary physician referred me to a hematologist, at my insistence, because my arms, shoulders, and chest had been covered for a year with subcutaneous blood spots, sometimes completely covering my forearms with dark red. My internist said it was normal bruising from bumping into things and most older people had this problem. She said I was just “forgetting” that I was bumping into things. The hematologist said it wasn’t normal bruising but he didn’t know what it was since I tested negative for all blood cancers. He did, however, do a huge battery of tests that turned up hypogammaglobulinemia. He believed the bleeding under the skin could be result of that.
My internist, though, continued to insist (and still does) that I’m just clumsy and always bumping into things, especially since my balance has deteriorated.
At that rime I had just started seeing the neurologist. I gave him the blood test results from the hematologist. They showed that my IgG was 333 (normal starts at 635), my IgM was 27 (normal starts at 45), and my gamma globulin level was 5.7, with normal starting at 11.7. Other immune indicators were also off. The conclusion was that I had hypogammaglobulinemia and needed more extensive testing and treatment. My neurologist glanced over the results, said “This doesn’t add up to much of anything,” and handed the report back to me. My internist didn’t think it was her job to follow up on the immune question.
But the neurologist did start me on IViG for the CIDP, and as I learned more about immune disorders I figured I was safe and getting what I needed. But now I’m not sure. I’ve tried to talk to my neurologist about the immune disorder and how it might affect my neuropathy, but he simply will not discuss it. He changes the subject!
My internist has referred me to an immunologist, whom I’m seeing week after next to get some answers. I don’t know what to expect or how my neurologist will react to my seeking advice from an immunologist. I doubt he will go along with any changes the immunologist might recommend. His only concern is treating my neuropathy.
Has anyone else dealt with such a situation? What did you do? Were you able to get your doctors to communicate and cooperate with each other? I want a new internist, but finding one who knows anything at all about CIDP might be impossible. And my neurologist has never communicated with my internist in any way about my case, and I don’t expect him to start. All this, plus other pain problems being less than adequateky treated by the pain specialist, is a constant source of stress.
I don’t expect anyone here to have the answers. I’m basically just venting. But I’ll welcome any advice from anyone!
Sandy
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May 8, 2017 at 7:46 pm
Sandy-
At times I think one of our biggest problems is dealing with the doctor’s egos. I have gone crazy for the last two years trying to get answers and have the doctor’s communicate with each other, but I have had little success.
I am in a nursing home and their doctor should be coordinating everything, but I don’t think he has the slightest idea of my diagnosis. This last timeI saw him, we had a disagreement over his wanting to treat me for high potassium with a medication that could have possibly killed me, when I was disputing the blood test results because of the way the blood was taken (tourniquet left on too long and very small needle used) and he backed off but was angry that I had researched the medicine and discovering that if it was taken with the artificial sweetener Sorbital, which is a major ingredient in one of my medications, it could cause intestinal necrosis. He hasn’t visited me since.
I see an ortho surgeon tomorrow about correcting my deformed foot, but blood tests are showing severe anemia. I have been asking for them to look into this because if surgery is offered, I don’t want a delay because of my blood.
I have four different online apps from my doctor’s that display my visit and test info. It would really be great if there was a way to link all of this information together so everyone could see all of the test results. My last blood and spinal fluid are on the hospital app, my neuro has a different one, my two eye doctor’s use the same app and I have been set up on the IC Irvine Neuromuscular Center’s app even though I don’t see them for another three months.
Every time I see a new doctor, I dread filling out the paperwork, worrying that I might be leaving out something important. Here is a list of my conditions:
Diabetes Type II 9/15
Necrotizing Cellulitus 9/15
Cataracts 9/15
Retinal Bleeding 9/15
Congestive Heart Failure 10/15
Fractured right ankle, surgery 12/15
Antibiotic resistant urinary tract infection 5/16
Ulcerated right foot 8/16
Polyneuropathy 8/16
CIDP 11/16
Autonomic peripheral neuropathy 4/17I lost the ability to walk five days after being hospitalized for the cellulitis but I could not get anyone to do anything about it. When in rehab after the broken ankle, my inability to walk was considered to be self limiting and my insurance cut off care and rehab. I am finally getting PT again after a year of being cutoff, but they have no idea what to do to help me. I try to explain, but they don’t listen.
Listening would solve a lot.
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May 20, 2017 at 8:38 am
After thousands of dollars and years later i have been diagnosed. With CIDP and i also have hashimotos aka thyroiditis. I have a neurologist and a endoconologist who are two of the greatest human beings i could ask to care for me they listen in depth and never ignore a single symptom.
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May 20, 2017 at 9:34 am
I’m glad you have a diagnosis at last so you can receive treatment. The inability of doctors to recognize neuropathy when they see it is absoluteky maddening, and it delays crutical treatment for many people.
I had Hashimoto’s thyroiditis when I was young, and it destroyed my thyroid function. Fortunately, hypothyroidism is super easy to treat with a daily pill that gives you all the thyroxine you require. You may need repeated blood tests for several months to get the dose adjusted, but after your doctor finds the right level for you, all you have to do is take your pill every day.
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July 6, 2017 at 10:32 pm
Sandra,
Oh, how I identify with your frustration! For a couple years now I’ve been saying to my primary doc, “My world is shrinking again as my health is failing. I have x, y and z, and nobody is putting any of it together. To whom do I go?” To which she replies, “Oh yes. That must be really hard to deal with. I want you to go to a pulmonologist, rheumatologist, hematologist and neurologist.” Then she gives me routine labs and says she’ll see me in 6 months. It makes me want to scream! I want a real doctor in internal medicine who takes the entire body into consideration. Not a specialist who’s view is myopic and not a general family doctor who is no more than a secretary doling out specialist referrals. The problem with seeing a new doctor is 1) I don’t think I could make it through trying to communicate my very involved and complicated almost 3 decades long medical history and current complaints and new diagnoses, and 2) What if it turned out that said new doctor turned out to be as poor a physician or worse than my current one?
I thought my CIDP symptoms started less than a year ago, but now that I think back, I realize that a slew of symptoms all began around 2.5 years ago. I think they are all related. My rheumatologist (who is really a doctor of internal medicine, certified in dermatology and rheumatology and practicing as a dermatologist!) thinks they are all the result of an autoimmune disease, dermatomyositis. The pulmonologist doesn’t believe so and neither does the neurologist. He says this type of demyelinating neuropathy is clearly CIDP.
That’s just the tip of the tip of the iceberg, but I won’t bore you any further. What settles my mind is that many of these proposed diagnoses have very similar treatment protocols: steroid, immunosuppressants, plasmapheresis and IV immunoglobulin.
When it comes down to it, unfortunately, we, the patients have to be amateur detectives and doctors. We have to hunt down our symptoms, their treatments and the best doctors out there to treat us. I wish that all the various doctors many of us visit would communicate better with one another. I often hear the term “team of doctors” but have never had the blessing of having a “team”.
My latest step is gradually switching to specialists all from a nearby university hospital in the hopes that they can be a team. Their individual reputations are superior so I know I’m getting a step up, at least in knowledge and experience. Now communication will remain to be seen.
Sorry I haven’t really said anything to help. I hope at least knowing you’re not the only one frustrated by this helps somewhat. Praying for your healing and God’s peace.
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April 19, 2018 at 6:09 am
Greetings to all fellow sufferers. I am a new member, and have not used the forum before, but felt the need to share. I have CIDP and nine other immune system challenges.
Type one diabetic for fifty years, excellent control, no related issues. I was a competitive runner and still train extremely hard. I am certain exercise and a careful diet have dealt successfully with the diabetes. Easy.
Then I was diagnosed with CIDP a couple of years ago. I have never been ill. No colds, flu, headaches, fevers and I’ve certainly never vomited. CIDP has been a real shock. I think god was saving diseases up, as the CIDP was quickly followed by Lichen sclerosus (rare, and pretty revolting. I’ll spare you the gory details) and a myriad of other issues. Migraine, POS, Blepharitis, Rosacea, IBS, Gum disease, Chronic fatigue. The latest diagnosis is Skin cancer. A few other minor issues have also materialised, but I’m sweeping them under the carpet, and refuse to take drugs. I maintain insulin doesn’t count, nor IVIG. Both are produced by the human body.
I now have seven specialists. But just like your doctors, they work in the same hospital, but NEVER communicate. I now have no feeling of hypoglycaemia because of the CIDP nerve destruction. I also feel hypoglycaemic when I have a normal sugar level. I’ve pleaded with the endocrine specialist and the neurologist to communicate, but they just pass the buck.
This is potentially a serious situation, I’ve already had one coma in my sleep. The problem combines the worst of both diseases, and neither doctor will help.
I have never had a GP, as I’ve never been ill. I have attempted to find one, but most refuse to deal with CIDP, as they know nothing about it!
People are chastised for googling medical conditions? We seem to be given very little choice, although I have yet to lower myself to that level.
I am British, now living in Australia. I am aware the U.S. has far better medical care than my home country, and Australia is about ten years behind. Should I ever win the lottery, I will instantly book a ticket to your fair land for help. Although reading your emails has made me wonder…
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