Poll What type(s) of doctor gave you your diagnosis for ME/CFS?

What type(s) of doctor gave you your diagnosis for ME/CFS?


  • Total voters
    58

ShyestofFlies

Well-Known Member
ME/Chronic Fatigue Syndrome

On your path to an official diagnosis? I started this poll to get an idea of where to head next in my journey to getting treatment and pursuing disability. Here is the sibling poll for fibromyalgia: here's the link to that one

[fright]
Diagnostics.gif
[/fright]If you take the poll, then consider posting about:

  • What type of doctor diagnosed you?
  • What type of doctor primarily manages your me/cfs condition?
  • How long did it take to get a diagnosis from your early symptoms?
  • What is your diagnosis officially titled?*
If you saw a dedicated ME/CFS specialist- were you refered there or did you end up there by your own research and suspicions?

*Are you officially diagnosed with Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, or a different title?
If you know the exact diagnostic code that'd be cool to know as well!
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
If you would take the poll, then consider posting about:
What type of doctor diagnosed you?
What type of doctor primarily manages your me/cfs condition?
How long did it take to get a diagnosis from your early symptoms?
What is your diagnosis officially titled?

If you saw a dedicated me/cfs specialist- were you refered there or did you end up there by your own research and suspicions?
Great question ShyestoFlies....

My story - I got sick around 1980. I realized I had ME/CFS around 1985 but ignored it because the news was so grim.
I basically looked for alternative health MD's. I was eventually diagnosed by several alternative health MD's as well as Dr. Cheney.

I got nothing from traditional MD's other than a diagnosis of depression which was quickly overturned by a psychologist.

Once I started learning about ME/CFS I found out about Cheney - I learned about him through the internet - he was the go-to guy at the time - unfortunately what mostly happened with Cheney was a lot of money down the drain.....

I'm not seeing anyone now. ME/CFS made it difficult financially to see a doctor and then pay for treatments. I manage my own symptoms...
 
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madie

Well-Known Member
I got sick in 1985. I was diagnosed with CFS in the early '90s. This GP was in a group practice with Dr. Teitelbaum, who was just getting interested in CFS. There was no treatment.

I manage my own CFS. I saw Dr. Teitelbaum in 2001, and Dr. Rey in 2013-2015. Neither one had anything for me. I go to my GP for things like vertigo, but she knows nothing about this illness.
 

Tammy7

Well-Known Member
The Doctor who diagnosed me could be put in 3 different catagories. Dedicated CFS specialist, Immunologist, integrative medicine.

I manage my symptoms.
 

San Diego

Well-Known Member
It’s starting to sound like a pattern .....

Several years unexplained sickness being diagnosed as depression.
Finally finding an “expert” to get ME/CFS diagnosis.
Years of treatments, with no benefits except to pad the doctor’s pockets.
Retreat back to GP with a few acceptable diagnoses that can be treated symptomatically - i.e.: vertigo, dysautonomia, migraines, etc.

Is there any pattern to who gets better? Gradual onset vs rapid onset? This doctor vs that doctor? Early in illness vs late in illness? In other words, is a rapid and proper diagnosis really helping people get better, or is the end result the same regardless?
 

IrisRV

Well-Known Member
My GP did the first diagnosis about 4 years after I first got sick. He thought CFS and FM were the same thing, but at least I had a name for the condition so I could look it up to find a doctor who actually knew something. Since then, I have been diagnosed with ME/CFS by three different ME/CFS specialists.

My official diagnosis is CFS because my docs say that is the only diagnosis with a code they can use. The specialists all called it CFIDS or ME/CFS when talking to me.

My ME/CFS specialist manages my condition. My current GP knows diddly squat about the illness and doesn't want to know.

The only other specialist I see is a hematologist to get my IVIG, but my specialist referred me. The heme also knows diddly about ME/CFS but is willing to prescribe the IVIG infusions, look at my labs, and ask me how I feel. I guess that's good enough. :rolleyes:
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
It’s starting to sound like a pattern .....

Several years unexplained sickness being diagnosed as depression.
Finally finding an “expert” to get ME/CFS diagnosis.
Years of treatments, with no benefits except to pad the doctor’s pockets.
Retreat back to GP with a few acceptable diagnoses that can be treated symptomatically - i.e.: vertigo, dysautonomia, migraines, etc.

Is there any pattern to who gets better? Gradual onset vs rapid onset? This doctor vs that doctor? Early in illness vs late in illness? In other words, is a rapid and proper diagnosis really helping people get better, or is the end result the same regardless?
You're right - I hope we get some better news!
 
Same pattern. I've had ME/CFS for 14 years. The first one to surmise I might have it was a Homeopathic doctor in Houston. That was about 4 years into my search. I saw perhaps 3 dozen different doctors of all disciplines in the beginning, from Infectious Disease specialists, Neurologists, Cardiologists and on and on. With the same result most patients have; nada......

The only doc I see now is Dr. Vivian Rodriguez who is an Endocrinologist. She knows virtually nothing about ME/CFS and it's only recently that I think she finally believes I have ME. But she treats my Addison's and Thyroid issues and gives me the meds I need for sleep, which is either Ativan or Xanax.

In the beginning my husband and I spent 10's of 1000's of dollars trying to determine if there were underlying issues. And that wasn't really a total waste. I had severe Candida, which cleared up over time with rotating probiotics and herbs and oil of oregano. I learned about food sensitivity issues and implemented the program of rotating food items every 4 days, even though I tested negative twice for Celiac. I certainly eat a lot healthier now.

But, the last 3 years as I've realized that the severe symptoms of ME/CFS are not resolving, just getting ever so slowly worse (I'm age 61), I've stopped doing all the research and stopped trying to find treatment or a good PCP, which don't seem to exist.

I follow the blogs and articles and hope that in my lifetime there might be some movement toward finding a cause. As a postscript, a friend just went to Dr. Cheney for a very expensive 3 day evaluation, spent LOTS of money and came away with virtually the same list of supplements and protocols I already follow.
 
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acouchy

Member
First year of being ill I was (mis) diagnosed with depression by my GP after my lab tests came back normal. I took many different combos of antidepressants and they were all horrible. Made me fat, gave me insomnia and did not help with whatever was making me ill.

So I keep visiting my GP until he gave me a referral to a specialist of his choice.

Approx. 5 years into my illness I saw a Rheumatologist who (mis?) diagnosed me with Fibromyalgia. Sent to a pain management class and told to exercise. My illness got worse. Continued asking my GP for help until he sent me to see another specialist of his choice.

Approx. 10 years into my illness I saw a local Internist. He diagnosed me with CFS. Was told I was a little of shape based on a treadmill test. Was told to exercise. Exercised... became housebound and at times bedridden. Starting doing my own research online. Found an Internist who specializes in ME/CFS so I asked my GP for a referral.

Approx. 13 years into my illness I was diagnosed with ME by the specialist I found.

Currently I am in my 18th year of being ill. Unfortunately I only got to see the ME specialist for a year. I do not currently have a doctor who manages my ME/CFS. I have my GP who I see when new problems arise that could potentially be related to other health issues. I printed him out a copy of the ME International Consensus Criteria a few years ago but I have no idea if he actually read it or not. I try my best not to talk to my GP about my ME/CFS I know in the past he believed ME/CFS was psychosomatic and there is a doctor shortage here. I live in Canada and there are no specialists.
 
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I haven't really been 100% since I had mono in 1982 but it was dismissed or "diagnosed" as lazy, youthful opposition to hard work (really, by a doctor), depression, constipation, overweight, candida (when that was the trendy holistic diagnosis in the early 90s). Most were general practitioners of the regular or holistic kind.

No treatment except moralizing from the regular doctors, bagfuls of supplements and diets from the holistic ones. None were sustainable or particularly effective. I quit doctors for a long while there and treated myself with homeopathy, yoga, and over the counter hormones with some success. Better than the docs.

Then in 2007, I really began to be dysfunctional. I was extremely busy--homeschooling my kids, writing curriculum, going to school full time (pre-med and homeopathy school), functionally a single parent--but this was beyond the kinds of issues I'd had so often and so long.

I went to another holistic MD who gave me a chronic fatigue diagnosis but admitted it was a junk diagnosis for insurance purposes because she really thought I had "food allergies" which weren't diagnosable.

When I wouldn't undertake her very expensive and not insurance reimbursable "allergy elimination" program, she lost interest in me. When I tried an allergy elimination diet and truly got crazy, she just dumped me. I spent more years treating myself for "adrenal fatigue" and had periods of seeming recovery but they never lasted.

In 2011, a neurologist grudgingly diagnosed me with fibromyalgia when there didn't seem to be anything else wrong with me. Treatment was my choice of Cymbalta, Neurontin, or Lyrica. A later GP gave me a script for Low Dose Naltrexone on my request.

Subsequent doctors have listed my diagnoses with various diagnostic codes that I am too tired to go look up but the names were Chronic Fatigue, Chronic Fatigue Syndrome, Fibromyalgia, and Chronic Fatigue/Fibromyalgia.

I gave up on docs again when, in a search for a new doc who would renew my LDN (old doc left), a round of testing including a cardiac stress test left me bedridden and brain "dead" for nearly a year. I am now buying LDN from overseas without a prescription and self-treating with supplements and lifestyle protocols.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
First year of being ill I was (mis) diagnosed with depression by my GP after my lab tests came back normal. I took many different combos of antidepressants and they were all horrible. Made me fat, gave me insomnia and did not help with whatever was making me ill.

So I keep visiting my GP until he gave me a referral to a specialist of his choice.

Approx. 5 years into my illness I saw a Rheumatologist who (mis?) diagnosed me with Fibromyalgia. Sent to a pain management class and told to exercise. My illness got worse. Continued asking my GP for help until he sent me to see another specialist of his choice.

Approx. 10 years into my illness I saw a local Internist. He diagnosed me with CFS. Was told I was a little of shape based on a treadmill test. Was told to exercise. Exercised... became housebound and at times bedridden. Starting doing my own research online. Found an Internist who specializes in ME/CFS so I asked my GP for a referral.

Approx. 13 years into my illness I was diagnosed with ME by the specialist I found.

Currently I am in my 18th year of being ill. Unfortunately I only got to see the ME specialist for a year. I do not currently have a doctor who manages my ME/CFS. I have my GP who I see when new problems arise that could potentially be related to other health issues. I printed him out a copy of the ME International Consensus Criteria a few years ago but I have no idea if he actually read it or not. I try my best not to talk to my GP about my ME/CFS I know in the past he believed ME/CFS was psychosomatic and there is a doctor shortage here. I live in Canada and there are no specialists.
Thirteen years - a long time - and still no ME/CFS expert - we really do this mostly on our own..
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I hiop
I haven't really been 100% since I had mono in 1982 but it was dismissed or "diagnosed" as lazy, youthful opposition to hard work (really, by a doctor), depression, constipation, overweight, candida (when that was the trendy holistic diagnosis in the early 90s). Most were general practitioners of the regular or holistic kind.

No treatment except moralizing from the regular doctors, bagfuls of supplements and diets from the holistic ones. None were sustainable or particularly effective. I quit doctors for a long while there and treated myself with homeopathy, yoga, and over the counter hormones with some success. Better than the docs.

Then in 2007, I really began to be dysfunctional. I was extremely busy--homeschooling my kids, writing curriculum, going to school full time (pre-med and homeopathy school), functionally a single parent--but this was beyond the kinds of issues I'd had so often and so long.

I went to another holistic MD who gave me a chronic fatigue diagnosis but admitted it was a junk diagnosis for insurance purposes because she really thought I had "food allergies" which weren't diagnosable.

When I wouldn't undertake her very expensive and not insurance reimbursable "allergy elimination" program, she lost interest in me. When I tried an allergy elimination diet and truly got crazy, she just dumped me. I spent more years treating myself for "adrenal fatigue" and had periods of seeming recovery but they never lasted.

In 2011, a neurologist grudgingly diagnosed me with fibromyalgia when there didn't seem to be anything else wrong with me. Treatment was my choice of Cymbalta, Neurontin, or Lyrica. A later GP gave me a script for Low Dose Naltrexone on my request.

Subsequent doctors have listed my diagnoses with various diagnostic codes that I am too tired to go look up but the names were Chronic Fatigue, Chronic Fatigue Syndrome, Fibromyalgia, and Chronic Fatigue/Fibromyalgia.

I gave up on docs again when, in a search for a new doc who would renew my LDN (old doc left), a round of testing including a cardiac stress test left me bedridden and brain "dead" for nearly a year. I am now buying LDN from overseas without a prescription and self-treating with supplements and lifestyle protocols.
I hope people for the NIH are reading this...
 
I live in England so not sure if my story counts in your poll but just in case . . .
I have spent many years on a general slide downwards being generally ill, not having the energy I felt I should have had at any given age.
In addition to the usual childhood illnesses (measles, chicken pox, scarletina) I had two serious bladder infections, one when I was around five and one when I was around 15. In both cases I was so ill I was a whisker away from being rushed into hospital. Then for the next ten years or so I had constant colds, sore throats, earaches and never really seemed able to be fit and well.
Then in my late twenties (around 1990 ish) I had what looking back was my first obvious trigger, a serious bout of two week bedridden flu and a gut infection. It took months to properly recover from that. Then in early thirties I noticed I was getting less and less able to go to work and do the housework and leave enough energy to be fit and active in any spare time. Colds and sore throats started getting worse with a strained voice and frequent loss of voice, often accompanied by flu like symptoms.
In 2001 I developed an unexplained case of shingles followed over the next three or four years by two bouts of iron deficiency anaemia and two of B12 deficiency, all similarly unexplained. Then people started noticing and commenting on how I seemed to be getting more and more viral infections that were obviously taking more and more toll on me, and taking me longer to recover from.
Around this time one of my sisters (who was diagnosed with ME in the mid 80’s) started suggesting she thought I might have ME. My sisters case was on record at my doctors and from this time onwards (2001) I was much more frequently asking my GPs why I kept getting so many viruses and had so little energy. Apparently some people are just susceptible to viruses and I would just have to learn to live with it.
Between 1995 and 2010 because of throat and stomach problems I was twice referred to an ENT specialist, once to a Gastro specialist and twice to a speech therapist. Between them all they were able to diagnose was post nasal drip and acid reflux. Still I was asking GPs why I was getting so many viruses, why I had throat problems, swollen glands, acid reflux, no energy, poor sleep etc etc and no-one could put the picture together.
Around the end of 2010 my health started getting noticeably worse. Finally in March 2011 I had what I now know to be a massive ME crash at work with floods of tears (haven't been able to work since). I was sent home and FINALLY a few days later got to see a GP who suspected ME. She went through my history, sent me for all the elimination tests which proved negative. Blood tests showed raised ALT and viscosity, vitd deficiency and Epstein Barr antibodies though I have never officially been diagnosed with glandular fever. At the end of 2011 she said she was certain it was ME but sent me to a specialist ME clinic in March 2012 where I was confirmed as a “clear cut classic case of ME.” In the UK the official term is ME/CFS but my own research over recent years leads me to believe I best fit the criteria for ME.
Since then I have had another big ME crash after which my GP put me on anti-depressants. Why I have no idea because who wouldn’t be fed up living this black hole of a life, but I don’t think of myself as depressed. My GP is my primary care provider but she has also referred me to a CBT course for ME, for which I only managed to attend the first session out of six and was not physically able to attend any more. It caused me more pain than it eased. She also in mid 2015 diagnosed me with fibromyalgia for which I have been referred to the pain clinic, who in my area only offer different, stronger pain killers for my conditions. Nothing else, no acupuncture, nothing. Standard treatment for ME and fibromyalgia in England is pain killers, anti-depressants, CBT and if you are really unlucky graded exercise therapy. Other than that you’re on your own!
 
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michele

Member
I experienced problems with fatigue and insomnia beginning in 1977. Repeated doctors visits were fruitless. I was advised to do aerobics. In 1983 I became unable to work, experiencing symptoms of severe insomnia, and mental confusion, mostly. Again, repeated doctors visits were fruitless. I finally was diagnosed with mixed Hashimotos and Graves's disease, was treated, went through relapse and remission repeatedly. Finally had a thyroidectomy in 1986. Again felt better for a while, then crashed. In 1987 I received a diagnosis of chronic EBV from a doctor who specialized in hard to treat cases and chemical illness.
I was lucky, I had good insurance and was able to see a lot of good doctors (mostly immunologists and endocrinologists) and try a lot of things from transfer factor to homeopathics, had ups and downs, but nothing really worked for long. Now I see a doctor who specializes in ME/CFS who prescribes sleep meds and thyroid and we have tried things that don't help much. I see an acupuncturist who gives me several herbal remedies which help a lot of the symptoms and help me get out of bed. I still have no stamina and am mostly housebound and bedbound.
So for all of the really good doctors I was able to see, and the varioius treatments I tried, none helped me much.
BTW, I believe the WORST thing I did was DMPS after I had the rest of my amalgams removed in 1996. I had a mouth full of amalgams that were improperly removed in the early to mid 70s. I really wonder if that set things off. I don't know.
 
ME/cfs diagnosis by an infectious disease doctor in Jan 2001, after 10 months testing and various specialists. Followed by GP until 2004 then I moved 1/2 way across the country to see Dr. Carruthers. I was so fortunate to have him take care of me for a few years before retiring. He fought the good fight trying to convince the world ME was not a psychological illness.

I then saw a rheumatologist who happened to see me/fm patients.

I also made the back and forth between psychiatrist and neurologists. The psychiatrists helped so much in coping with poorly understood disease. They also helped me prepare for and get over the specialists who think ME is psychosomatic. Just last May a neurologist said as much about ME and POTS.

In 2010 a Neuro-opthamologist diagnosed me with a form of dystonia called blepharospasm with full closuree episodes lasting 20 minutes sometimes consecutive episodes totaling hours. She gives me botox for that, chronic migraines, left side face pain after jaw injury and trapezius muscles to stop constant spasm.

2010 Naturopath - treatments and more diet changes. There was some improvements.

2012 ENT specialist diagnosed me with laryngospasm (full closure) and esophageal spasm (painful). They can put botox in if full closure spasms occur twice weekly or more. This ENT also authored studies on Central Sensitization.

2015 Surgeon diagnosed Lymphocytic colitis after 15 months of diarrhea ten times a day. Diagnosis of this normally takes 3 months. This was an example of a GP not believing me. I got the steroid treatment for 2 months and it put it into remission.

2015 - POTS diagnosis from an internist at CCDC Vancouver. So happy I had symptoms that I understood and could get relief from.

I too get the paralysing type episodes of my legs lasting hours up to 10 days, followed by rehab. I have a variety of gaits depending how I can get my legs to work. (Would that constitute neuroplasticity?). I would love to see a neuroplasticity study using fmri, mrs, spect or pet scans.

Alot of the above is controlled pretty well by medicine and meditation. Do your due diligence, phone ahead and ask if the specialist believes ME to be psych or neuro-immune. Don't give up your search for answers and treatment - some of these things are rare (tested for stiffpersons 1 in a million).

Shout out there to all of the researchers out there for all they do for us.

So sorry, did it again and made a long post.
 

EILEEN

New Member
Overnight onset in 1990. Completely unable to return to work. Bedridden and housebound. At two weeks, hadn't improved at all. My doctor diagnosed "post-viral syndrome" and kept track of me. When I had not improved at all after two months, my doctor and my allergist both suggested a work-up for every disease known. Nothing. That infectious disease doctor sent me to another infectious disease doctor who was a Lyme Disease expert. He was very kind and spent two hours (!) examining me. He gave a firm diagnosis of Chronic Fatigue Syndrome and sent me to a noted immunologist who limited her practice and her research to HIV and CFS. I now had been very sick for three months. The immunologist ordered a full range of immunological blood tests. She said the resulting pattern was consistent with CFS. She could only treat me symptomatically, but she gave me invaluable advice about how to deal with friends, family, society, and doctors who might think I was merely depressed or lazy. She noted several times that I felt much sicker than her HIV patients, but looked perfectly well, which would make it difficult for others to understand my situation. About two years later, she decided to limit her practice and research to HIV because she could help those patients, but not those with CFS. She knew a couple of "CFS doctors" that I could try if I wanted to, but she would not reccommend them because she thought they both were only seeking to become well-known and make money. I went to each of them for a while because they were the only game in town, but decided that my immunologist had been right about them. Today, they are, indeed, very well known doctors in our field. During that period, I also went to an excellent naturopath. He was very good, but ultimately, we ran out of remedies to try.

I have now been sick for twenty-five years. I'm essentially no better. Indeed, I have developed new conditions because of my inactivity. I am still housebound several days a week and bedridden occasionally. I take medications for sleep and for severe pain. After several physical therapists who only made me sicker, I've only recently found an holistic physical therapist who is helping me feel a little stronger and more balanced on my feet. She only knows only a little about CFS, but she instinctively knows what type of exercise I can tolerate (only lying down on a table.) Lymphatic drainage also makes me feel that movement is less difficult; it lasts 2-3 days, but eventually may last much longer. I continue to experiment with natural medications, but I have given up entirely on intensively following the research in our field. I needed to get off of the roller coaster. I now rely only on this site, which is so good, and on a few sources that allow me to filter their reports, e.g., Medline, PubMed, and the NY Times. Medline has a fairly recent summary of CFS, with lots of footnotes to scientific studies. It's not bad and I have given it to a couple of my health providers.

I live near a major city and have been very fortunate to have had excellent doctors who believed me and gave me an early, firm diagnosis. I had decent health insurance and terrific support and care from my husband. I already knew how to read medical research. And I easily qualified for government disability payments and Medicare. Nevertheless, with respect to my health, I remain in the same boat as many of you.

For those of you who are newly sick, even if diagnosed by only one doctor, I think my experience has four takeaways:
1) Get a complete work-up from an infectious disease doctor and an immunologist and an endocrinologist, perhaps also a rheumatologist, although I have not done that. The symptoms of chronic fatigue syndrome are shared by many serious illnesses for which there may be treatments. Never stay with a doctor who lazily ascribes any new symptom to your CFS.
2) after you have a diagnosis, apply for SS Disability and Medicare. Some people think they can't get it, but I can assure you that, armed with a diagnosis, I had no problem at all.
3) Try to build in as much fun as you can. Make plans even if you may not be able to partake of them on the day. If a wheelchair will help you participate, use one. Also, people who love you are willing to adapt their plans to your needs, if possible. Ask for that. They want to help any way they can. It took me a VERY long time to plan for fun and that was a huge mistake.
4) Any chronic illness or pain syndrome inevitably leads to sad, angry, self-critical emotions. You cannot afford to ignore them or to allow them to overwhelm you because they will absolutely make you physically sicker. It is imperative to acknowledge those feelings as being quite natural, and it is also necessary to develop some perspective and emotional balance as well. One doctor told me that anyone with a chronic illness should see a therapist for as long as she is sick. I haven't always done that, but when I do everything improves a little. If you cannot afford a therapist, talk with a cleric you like. Most are happy to counsel anyone, regardless of their faith or non-faith. Try a few until you find someone you like. A friend or relative you trust completely to stick it out with you is invaluable. Fortunately, some "friends" will self-select themselves out of your orbit. That's a very, very good thing! You only have the energy for a few, loving friends. This is a pretty expansive reply, but I hope some of my experiences will be helpful to those who are just starting out with this illness. Please remember that you DESERVE all the care and support you can get.
 

ShyestofFlies

Well-Known Member
Thank you so much everyone for sharing your stories, I cannot possible express how helpful this is to me. After my rheumatologist appointment I broke down and cried in the car because I felt hopeless and didn't know where to go next. Thanks to your experiences I now feel like I can forumulate some semblance of a direction.

During the course of my research I have decided to see another rheumatologist for a second opinion (And possibly a first for this post viral fatigue and other symptoms). I have also found that naturopaths cannot fully practice in my state.

I look forward to reading any further contributions to this thread.
 

Cilla

Member
What type of doctor diagnosed you?
My GP

What type of doctor primarily manages your me/cfs condition?
My GP (a different one than the one who diagnosed me). She doesn't know a lot about CFS, but is open to learn along with me. When I read about different studies or possible meds to treat symptoms, she is open to try a new med. Sometimes I will print an article to give her.

How long did it take to get a diagnosis from your early symptoms?
About 9 months

What is your diagnosis officially titled?
CFS & FM. However, once the OEM study was released last year, I refer to my illness as SEID.

If you saw a dedicated me/cfs specialist- were you refered there or did you end up there by your own research and suspicions?
I would love the opportunity to see a CFS specialist, but the ones I've read about in my state do not accept my insurance.
 

Aimee

New Member
I was diagnosed in with post viral syndrome in March 2007 but I was showing symptoms for months previous, after 6 months I was diagnosed with CFS by my paediatrician at age 14. I had been to multiple specialists in the meantime to rule out other illnesses and was diagnosed with a micoplasma infection as well as glandular fever (mono). I was then refered by my GP to an amazing endocrinologist with a sub specialty in ME/CFS. Who also diagnosed with Delayed Gastric Emptying, hormone imbalances, Vitamin D deficiency, Myalgia and Postural Hypotension. He has been able to manage my illness quite well even though I've had multiple relapses of my CFS and is very open to natural/holistic treatments. We travel 3 hours just to see him every 6 months and in between I am seen by my GP and other specialists.
 
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Cecelia

Active Member
I had a gradual onset but by 1995-96 my memory was so impaired I had to quit my job as i could not remember whom I was speaking to or what we just said. Sometimes I would lose track of where we were! This applied to driving too. Got lost driving home and to familiar places. Went to the HMO doc for my 5 or 10 min appointment in which I got to say a few sentences and he dismissed me as not having anything wrong. He told me to buy a memory tape to practice with after accusing me of smoking too much marijuana. I was horrified. I have never been a pot smoker and I had a severe problem with cognitive functions. I stopped trying to get help from a doctor for a year or two, then started with a new doc. She believed I was depressed. So did the next doc I tried. I wasn't but I tried the anti-depressant and it didn't help me at all. Only gave me more problems.

During this time I also had abnormal fatigue. Had had insomnia and muscle pain going way back. They were part of the "gradual onset" from the 80's.

Learned about FM from a friend with it and went to a support group. There I learned a lot but also learned my symptom picture was different. Had some overlapping problems with FM but memory and fatigue were significantly worse and pain not as bad, so left, but while there, heard of a sympathetic helpful doc. Went to her.

Now we are in 1999. This GP and I together diagnosed CFS and she started me on two very helpful meds. This increased my 4 hours a day of moderate energy to about 6 instead. But always have had serious and limiting PEM too. Nothing has ever shifted that. But with pacing and good self care I had a circumscribed life at that point. Could do very easy part time work then until about 2010.

That doc left her practice in 2000 and so I went on to others. Found a sympathetic but ME/CFS ignorant GP and a decent neurologist for the dysautonomia--very bad hypotension began in 2010 after a hip surgery. Also have other autonomic and neuropathic symptoms. Have been gradually getting worse. Am sometimes housebound. Physically and socially very limited.

Sorry to be so rambling. In conclusion, I never have seen a specialist as there are none within my travel range. Most of my care and medication ideas have been from myself and what I learn from Phoenix Rising and now here. THANK YOU CORT AND EVERYONE! We are helping each other until the researchers and doctors catch up. One day they will play their part.
 

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