back from seeing a neurologist and could use doctor names for help ,desperate

[humanrising]

my head could spin around like linda blair!
I went to my GP about my long standing insomnia getting much worse as well as my cognitive issues becoming scary. I can't write, can't remember anything, having problems speaking ( the one that is the most disturbing) etc. I have had memory issues and some general brain fog but nothing like this. I have far more symptoms but it was sleep and brain issues to tackle first. I have never seen a neurologist.

the guy comes in telling me about my hip surgery and my neck issues lalala as if I don't know my history of these things and THIS is not why I am here. It took forever to get why I was there. "INSOMINA dumb ass" Brain damage for F sake" I wanted to scream at him.... but that's not what we good patients do.... sit and wait for him to actually ask me why I am ( he never did) I had to finally interrupt his diatribe and tell him... it was also on the papers I filled out as well as the referral notice.
He never asked me what my sleep was like or how bad how much I was getting etc. insomnia was enough info. he told me why the drugs I already have taken don't work ( I gave him a sheet of all meds I have tried that lists when I took it and why I stopped) so didn't need to listen to that BS either.
his "neuro exam" was even more of a joke. the questions he asked me would only show that I had SEVERE alzheimers disease. what day is it what year, apple table penny then repeat that back. ARE YOU KIDDING! he didn't even put me on the exam table to test my reflexes, I sat in the chair with ankle high boots while he hit the BLOODY boots to test my reflex's.

then the handouts. I told him that I practice perfect sleep hygiene but I had to go over the most stupid basic things. then his only" treatment suggestion" use that word very lightly was to try meditation and then he gave me a list of supplements, magnesium, turmeric, NAC. ALSO on the sheet of things I was already taking that I gave him.

I told him that I was concerned that I have no idea if there is anything serious going on with my brain, that I was hoping to find out more about brain stem herniation, ( I have had 4 whiplash injuries) or cerebral blood flow etc. He told me that those tests are worthless and it wouldn't change what or how he would treat. so I have brain damage and he would prescribe meditation or maybe take turmeric .

he then says well what do you think. I wanted to say so bad ... I want to kick you till you bleed. I couldn't get the words out of how depressed and frustrated I was that he was so dam ignorant and worthless. I tried to see a neurologist at UCSF who takes complicated patients. they denied me.... not complicated enough that took 3 months then I waited 6 months to see this shumck only to be told to take supplements and meditate.
all the I doctors I have seen have no clue how to help me. I am sick to death of knowing more then them. I go to them and I get that stupid deer in headlights look maybe some kindness but NOTHING else. I feel its like going to the hospital with blood squirting out of a nicked artery and the doc saying have you tried band aids or maybe visualization.
I am at my wits end. I don't have dreams of anything normal anymore just dreams and prayers that I could see a doctor who knows how to treat ME . someone who listens who knows more then me who will help me. I really can't do this much longer.
anyone who knows of a good doctor in the north bay or san Francisco area please let me know ( just not montyoa) since I am not interested in antivirals. thanks for listing.

 

[Galixie]

I wish I had something more helpful to say, but I can certainly understand your frustration and I'm sorry you had such a bad appointment. The neuro I saw about insomnia kept telling me to try aerobic exercise to try to wear the brain out so I'd be able to fall asleep. I tried explaining PEM to him but he just didn't get it.

I do hope you find something that helps you sleep. My problem eventually got better on it's own, but I know that doesn't happen for everyone.

 

[Raven Mom]

I don't have dreams of anything normal anymore just dreams and prayers that I could see a doctor who knows how to treat ME . someone who listens who knows more then me who will help me.

it's not too much to ask. I wish some of the good ones would do skype consults like experts in other fields do...and just have local gp's send lab-work, etc.

anyone who knows of a good doctor in the north bay or san Francisco area please let me know ( just not montyoa)

I saw that one of the moderators ( @Sushi, I think) suggested putting the request into the title of a thread so it has the best chance of visability. best luck to you.

 

[Mary]

@humanrising - wish I had more to say besides sorry about that. Unfortunately that seems to be par for the course for most doctors. They don't know anything about ME/CFS - the best we often get are those who listen and take us seriously but admit they don't know what to do. And the worst are something like the doctor you saw. Who know nothing about our issues but think they do, and won't listen.

Here are 2 clinics in your area which are known for working with ME/CFS: http://www.openmedicineinstitute.org/the-clinic.html
and https://centerforcomplexdiseases.business.site/

Many on the board have seen David Kaufman who is with the Center for Complex Diseases, though he started with Open Medicine Institute. I saw him once, he was not able to help me, but he has helped many others. You might ask for opinions on the board about Dr. Kogelnik (with Open Medicine Institute).

@Raven Mom has a good suggestion to do a post asking for names of doctors in your area, and to put that request in the title of your post, to increase your chances of getting a response. And the post should go in the ME/CFS Doctors forum. Actually I just did a brief look at that forum and saw this thread: https://forums.phoenixrising.me/ind...-bay-area-practitioner-recommendations.61313/

About your sleep and brain fog issues - there are many threads on the board about sleep. Most of us have difficulty with sleep. I take a cocktail of supplements, which I have to vary from time to time, which allows me to sleep. I can't tolerate prescription meds for sleep. An excellent sleep supplement is magnolia extract from Bulk Supplements. I've tried other magnolia bark supplements and most are very weak and do very little. 1/8 of a teaspoon before bed was enough to enable another member to sleep well with only one wake-up. I take 1/8 teaspoon before bed and middle of the night. There are many other things that have helped me as well but won't go into it here.

And there are lots of threads about brain fog too. So I'd suggest doing a separate post about brain fog and putting it under the Cognition forum.

I hate to say it but in many ways we are pretty much on our own with this illness. There are very few knowledgeable doctors, and many don't take insurance.

 

[humanrising]

thank you for the kindness, I changed the title as suggested. I will also look into what you have listed for me Mary thank you. the list that is posted on the doctors is unfortunately out dated most of the people on there are no longer practicing.
I have had this for 16 years. its just getting worse and worse . have tried every herb supplement ever made nothing helps, and most sleep meds haven't helped either .I haven't slept 4 hours for years just passing out for a short bits then awake, not going though a full cycle ever. my extreme pain is never going to improve if I don't sleep. I needed to know if or how bad my broken brain is, how much damage from years of pain and no sleep or if there is something that might have been from my car wrecks or when I slammed my head into the ground falling from a hammock. I don't believe him that an imaging study is worthless.
I ve been also fighting to get a sleep study only if it means I can move up the latter of " this is bad" and she should be helped and I can't get anywhere with that either. most days I somehow keep the faith but today it feels so dam hopeless.

 

[percyval577]

Neurologists think they are the best ones. And indeed, I as an ill person must be somehow worse than they.

Just discovered a combination: 500mg GABA, 500mg tyrosin, 250 mg tryptophan. vitC (and very very small amount of nickel?) Tryptophan can be critical I think (gut and even brain, I can´t tolerate it without tyrosine.). Since long: low manganese diet (!).

The combination can be understood to work in the basalganglia and thalamus. Hope that gives some hope.

 

[kangaSue]

You mentioned a hip operation, it wasn't a hip replacement was it? And have symptoms worsened since then?
Just asking because they are some faulty hip implants around causing cobalt and chromium poisoning.
http://www.abc.net.au/news/2011-05-16/patients-reveal-agony-of-toxic-hip-implants/2694656

 

[Learner1]

thank you for the kindness, I changed the title as suggested. I will also look into what you have listed for me Mary thank you. the list that is posted on the doctors is unfortunately out dated most of the people on there are no longer practicing.
I have had this for 16 years. its just getting worse and worse . have tried every herb supplement ever made nothing helps, and most sleep meds haven't helped either .I haven't slept 4 hours for years just passing out for a short bits then awake, not going though a full cycle ever. my extreme pain is never going to improve if I don't sleep. I needed to know if or how bad my broken brain is, how much damage from years of pain and no sleep or if there is something that might have been from my car wrecks or when I slammed my head into the ground falling from a hammock. I don't believe him that an imaging study is worthless.
I ve been also fighting to get a sleep study only if it means I can move up the latter of " this is bad" and she should be helped and I can't get anywhere with that either. most days I somehow keep the faith but today it feels so dam hopeless.

Have you tried Neil Nathan, Eric Gordon, or Robert Rowan?

I tried a bunch of things and finally got to sleep with l-ornithine.

 

[AndyPandy]

@humanrising

“I want to kick you till you bleed”

So relatable.

I hope you can find a decent doctor.

 

[humanrising]

You mentioned a hip operation, it wasn't a hip replacement was it? And have symptoms worsened since then?
Just asking because they are some faulty hip implants around causing cobalt and chromium poisoning.
http://www.abc.net.au/news/2011-05-16/patients-reveal-agony-of-toxic-hip-implants/2694656

no , I had a labral tear and just had the ligament nailed back and bone ground down. I then tore the other hip but deiced not to have surgery for the 2nd hip injury. both of these took minor movement, labral tares are common in athletes and I am sure not that! I might also have torn the ligament in my right shoulder. this is yet another 'falling apart" issue .I have no idea if I have any connective tissue disease like EDS etc. my GP ahhh don't think you have that and I wouldn't know where to send you to find out. end of conversation. I ve been trying to get a muscle biopsy but can't get any where with that because my doctor can only diagnosis TB or a cold.

 

[humanrising]

@humanrising

“I want to kick you till you bleed”

So relatable.

I hope you can find a decent doctor.

thank you, I should not have written that or my other rant in the post, it wasn't appropriate. I just left the appointment so sad and angry and felt for the first time I was done and if it had been easy I would have just called it. let them look at my brain after I was dead and then experts can see if there was anything really going on. no one I could talk to or scream out my grief with so came here because at least my fellow peeps on this forum get how crazy making this is.
I ve been at this for so many years with "such a positive attitude" while I swallow the months and years that are stolen by doctors basically blowing me off it is really worse then the symptoms.

 

[humanrising]

Have you tried Neil Nathan, Eric Gordon, or Robert Rowan?

It would be years before I could see Nathan or Gordon and the challenge is I can't afford to see these people even if I could get in to see them or the people you see before you see them. Rowan is new to me will look him up unless he is with Gordon medical group.

I live below the poverty line. when I have the energy I sell my childhood toys or my mothers costume jewelry on ebay to pay my rent. I am praying to find section 8 housing before I am homeless.(have 3 more years on the list)

I guess I am delusional that I will find a doc that I can afford who is also someone who knows what they are doing. I have Medicare and medical as my secondary.

while I was awake all night last night... thought maybe I could try to raise a little money by starting a go fund me page maybe I could see someone long enough to get some testing done to get somewhere.

 

[BeautifulDay]

My most down days, (besides the kids being sick with this) are when doctors dismissed my symptoms as being in my head and due to stress. Thankfully we now have the diagnosis of mitochondrial disease and we no longer have to hear "go see a psychologist", or "reduce your stress". Without the diagnosis of familiar mitochondrial disease, it was definitely hit or miss whether doctors took us seriously. I'd go to doctor's laying bear my symptoms and I'd leave the office under a black cloud of hopelessness and despair (ten feet under ground).

My top 2 worst experiences.

1) A top endocrinologist who told me that it was all in my head and that I should see a psychologist and that I should get rid of my therapist who was supporting me in keeping up the search for figuring out what was causing my symptoms. This doctor told me that sometimes therapists reinforce the idea of someone having a physical illness when it really is mental.

2) A top neurologist told me my symptoms were due to stress.

We bear our souls to these doctors, telling them of our very personal symptoms and do they listen? Dozens and dozens and dozens of doctors later, we now know it's mitochondrial disease in our family. The doctors should have known when someone has issues in 3 or more body systems or organs to send the patient for testing for mitochondrial disease. Yet, the doctors never mentioned this possibility.

Instead, they'd say yes, you have gastroparesis, and intermittent foot drop, and exercise intolerance, aminoaciduria, and low oxygen uptake, and POTS (later turned into low pulse pressure when standing), migraines, etc.... -- real physical things. But when my major symptom that I was coming in for was fatigue -- all of a sudden everything else of fact was dismissed and it was stress and mental illness.

Thank God for the great work being done by the ME and Mitochondrial Disease Communities.

Please keep up hope and remember you are not alone. We believe you and we understand.

We who need hope to crawl from one day into the next, often have it dashed by the doctors we turn to.

@humanrising - please know we are here for you!

 

[AndyPandy]

We understand @humanrising

I once went to a Rheumatologist. The appointment was for the senior specialist but I ended up with his newly minted assistant.

He told me to drink Red Bull. And that I should be recovered in 3 months.

Five years later I’m still significantly disabled and have to be pushed in a wheelchair. Just as I was when I saw him.

The anger, frustration and crushing disappointment after these kinds of appointments is something all too familiar to ME sufferers.

 

[AndyPandy]

@Gingergrrl

Do you know of any decent doctors for @humanrising?

 

[kangaSue]

I have no idea if I have any connective tissue disease like EDS etc. my GP ahhh don't think you have that and I wouldn't know where to send you to find out. end of conversation.

EDS is another can of worms that's hard to get a doctor interested in if you don't have classic symptoms. Some people even have stiffness issues with this rather than the more typical hypermobile joints.
For other connective tissue disorders, a simple blood test to run an ENA panel is an easy starting point.

 

[Gingergrrl]

@Gingergrrl Do you know of any decent doctors for @humanrising?

I do not know of a Neuro (and saw three in 2016, each were mean-spirited and/or incompetent and one of them still leaves me a bit traumatized two years later).

But, @humanrising, since you are in the Bay Area you are very close to my doctor who is at Center for Complex Diseases in Mountainview, Dr. Kaufman. I cannot recommend him highly enough and credit him with giving me my life back. He specializes in trying to figure out what is wrong with each specific patient, no matter how obscure, and treats patients with ME/CFS, MCAS, POTS, EDS, Lyme, Fibro, and all types of Immune & Autoimmune Diseases.

The other doctor in his practice, Dr. Chheda, is excellent, too (but I have not personally seen her). Unfortunately, they do not accept insurance so office visits and phone appts are private pay. BUT you can submit a Superbill to your insurance for reimbursement. Almost all of my blood work, meds, procedures, etc, that he ordered were covered by my insurance including two very expensive treatments (that part was a massive insurance battle which never would have been approved without his extensive help).

 

[humanrising]

such heart breaking stories. red bull. unbelievable !!!!!!! the sad stupid book we could all put together of idiots.... we could give to dr oz and he could do a show on it!
there is a wait list for dr kaufman so I put myself on the list. I will also look into dr chheda. I wish I could see dr Anderson with Gordon medical but neither one of them are taking new patients and I ve never heard of the new folks who work there and it cost a ton to see them. I live one town over from santa rosa so that would be great but again, can't pay what they charge with doctors who are new to the game so to speak.
I have this fantasy that I could start a movement where doctors offer with delight of course a first appointment for 15 minutes for some reasonable amount of money to meet them and go over how they would think they might treat you. no paper work just a short meet and greet. I am sure "dr red bull" would have only took 15 minutes to figure out!
I did manage to get one doctor over the years to do this and it was great because I found out no matter what was said on the web site she would have treated me in a manner I was not interested in.

I can't imagine how much money and time we have all spent on that first appointment or second to find out the doctor would never work. lots and lots I am sure. Another reason I so appreciate hearing others experiences with doctors its a good first look at if they are worth the energy and money to haul my tired sad booty in there.!
I finally got a couple of hours last night with that and all your kindness I am feeling less hopeless . blessings to you