As I have posted over the past months, I had been awaiting from April to get to see a new GP. This day finally came. I prepared with all my notes, all the medical charts and testing papers I could get from previous Doctors whom I saw from 2005-2019, my journals of daily life, my home practices of pain management, and meditation, physical therapy, surgeries, and more that I could carry. Out the door I went. Arrived on time, Doc was on time, and from there it all went down hill. My buttocks were so tight, like I was taking a test. This GP looked at my test results the HE ordered, threw his head back in the chair, and said, and I quote " this is to much, to much", while shaking his head. My results of labs were not given to me, and the GP just glanced at the screen and stated, O' all your tests of labs and bone scans are ok........ I wanted to go over some of them, and I also showed him my past test results to compare from my past Doctors. He glanced at them , thumbing through the hundreds of pages, some I marked or posted so he could see the diagnoses, and he then said, Well I could send you to a new rheumatologist but there is a long wait. Only One in the far region here. He also warned me that my ana-dsdna needed to be higher to get that appointment. I said why, and are some of my conditions in remission? He didn't answer my question but went on to say my lymes titer only had 3 points, so no need for treatment there. I spoke clearly of my ongoing symptoms, and showed him my journal, and asked what do we do now. My BP has been very high I stated, and very concerning, I do take amlodipine, and Lisinopril. GP instructs me to log 3 more weeks of BP twice daily and return in three weeks with my home BP device, and logins. I ask for a referral to a neurologist, as I have seen one always in the past, and he asks me, why do I think I need one!! I am just floored. Help, where do you go with this. On my back story, we moved to the country side because we could not afford where we lived before. There are very few GPs or specialists here. Many of them are 2-4 hours or more away, and my hubby is also disabled. We both have traveling trouble. My symptoms are reminding me daily that somethings are very wrong. I always go with my gut .Ongoing with this is becoming a whole nother symptom of mental instability, trying to make sense of it all. I just can't seem to wrap my head around this poorly orchestrated visit, that I took all steps to secure, and had all my records transferred to this GP. I apologize for the long cry here, to date this is my longest, and now I will retire to cry in a pillow of overwhelming circumstances. What can I do? What would you all do. Please tell me, any advice will be a blessing, set me on the right path. Thank you each to who reads this, you all are my only true support. bewildered, but sending my peace and blessings always, thestorm
on the hamster wheel, and help: As I have posted... - LUPUS UK
on the hamster wheel, and help
I’m really sorry that your GPappoitment didn’t achieve what you wanted.you hav obviously hoped that this consultation woul d help you a bit further on in your health journey.
I’m lucky in that We live 40 minutes from a centre of excellence, ,which is good.
You must feel really isolated with no proper provision for yourconditions
Oh heck this is a terrible tale of woe Storm.
Just to confirm you live in the States? The system you are experiencing sounds pretty similar to the one here in UK. Is this GP the only one and are your test results on some centralised system or is it usual for you to have to organise them all yourself and carry them around with you?
I don’t really know what to suggest because the place you live in is so vast and I don’t know if you can find yourself another GP or how easy it is for you to travel long distances. I know things are very hard for many of us in the UK too - especially those in the devolved regions who have no centres of excellence and cannot pick and choose our GPs or specialists. But at least we do have the NHS still.
I do at least know how horrible it is to be told that you’re making a mountain out of a molehill and asking too much. He should be saying “ok leave all this with me and I’ll go through it as best I can and then we will discuss options in a few weeks time” I would think?
I’m so sorry not to have more advice or suggestions for you. Is there an equivalent online forum to Lupus UK attached to a US charity that you could use to get more local help and advice than most people here can give perhaps? 🤗x
Thank you Twitchytoes, and to you I apologize for not replying sooner. I truly am grateful for all of the support. I really need it now. Yes I do live in the states, and we are entitled to our health records as we move to see new GP's or specialists. But the system is flawed here to. GP's and specialists are retiring fast, and there are not enough newer Doctors to fill there boots in many areas of non-metropolitan areas in this country. You are right, he should have reviewed my records that I had past Doctors send him almost 4 months ago. Or stated that he would review my files , something. I am looking into a forums here, I am sure there are some out there. All the help and advice here is great from support, insight, clarity, ideas, and so on, and it falls in the same general guidelines as most countries follow. There are standards that are followed world wide. As for help, I am on my own here. I can search on line for what type of US charity do you mean??? I truly need some guidance with that twitchytoes have a suggestion, I will apply it, please. I did as Roarah kindly suggested, and took the offer, so I will wait the months away again to see a rheumatologist. I also called a neurologist that is near by, his ratings were only fair, but beggars cant be choosers, not now. I have to get the old neurologist to send all reports ect. That time is killing time for me. I am truly a patient person, In my past life, aka jobs I took care of the elderly, and disabled, that type of job you must have great patients. I could go on and on, sorry to send you such a large response, please forgive me. I will stay on these sights as I know my conditions, and all the help, support, care, feelings, blessings comfort are here. I thank you dearly. I will keep posting and hopefully helping others here. peace, blessings to you !
Hi Storm. All I meant was that this community is attached to a small UK charity so there will only be so few here such as Roarah who are familiar with your healthcare system and can give you more practical advice relating to the specifics of your healthcare system.
Whereas if you also join an online forum such as SMART patients or Inspire or a large closed Facebook group connected to a US Lupus charity for instance - then you could get many more local recommendations and advice on who is good and what others in your area do. There are tons of good American forums for autoimmune diseases compared to UK ones - you just need to do your research.
Here in Scotland you would also have a 4-6 month wait and no choice about whom you see so I can relate. Meanwhile I wish you best of luck with the new rheumatologist and neurologist. Twitchy x
Thank you again for the reply, and the good sound information. I will be doing my research here, and find some US based forums, and such. I do understand that the miles do keep some information from reaching so far.... , I will still be here to, as I truly love this nitt forum, and all the wonderful people who I have cybered to care and know. You are a wealth of information, and i will reach out to Roarah, if she will have me,LOL, you guys are the life line here. sincerely, from the heart!!! Peace, thestormxx
Hi Storm, I also am sorry you are going through this. I don’t know your total situation, or how old you are, but have you reached out to the social security administration? Maybe a senior advocacy line? When my mom was in assisted living the place represented as being so wonderful but ended up being so pitiful. I remember my brothers and I call a senior advocacy group. I think it was government funded so the help was free? But start calling around. Google and find numbers. I think the help is out there, you just need to find it and let them know you need help.
You have great insight Brooksidecourt, thank you for the ideas! I am in the late 50's, and I am legally and permanently disabled since 1992. You gave me a good thought with your nice information, I am going to follow up with all the good peoples idea's, search the web more here in the US, and call Medicare. I ' it passed my mind, but you all got me on the path to thinking more clearly, I am, and I cannot say it enough,very grateful to you all for help. I do not know where it will lead me but nothing to loose as I wait in pain for my referrals for future care. I am just so jogged -up by this GP's attitude on me, I can't seem to shake it yet. Almost like a shock to my brain and body. Maybe mental trauma as I try to process it. Thank you for the ideas and response, as always, everyone here is so kind and caring. I wish you well on your journey too. Keep posting and helping, my sincere peace and blessings to you. thestorm xx
Take his offer to see the rheumatologist even if there is a long wait. When you receive that appointment date let the office know you would would like to be put on the cancelation list. Waiting is ok but not securing a specialist that can help is not. A GP really can not do much other than arrange for you to see the proper specialists and manage your case rather than treat. Let him manage your referrals and forget about him! I only see my GP yearly at the wellness exam or occassionally more if I have a virus. I now go straight to my specialists for issues about each thing. Kinda like when we skip the GP when we have gyn issues.
You got this storm, you are strong, intuitive and smart you will find the resources to get this disease under control , I believe in you. Xo
You are right Roarah, He should be managing my referrals, and such.. I will be doing some of what I wrote back to Twitchytoes, and some of your advice as well. I will be leaving that GP behind once I get the specialists I do need. Meantime, I am hanging on him, as he is all I got. With so many symptoms and conditions, I have no where else to turn, but to him. At least here you are all so special, supportive, caring and understanding, I greatly am humbled. I to you apologize too for not answering sooner, as time here is 5 or so hours difference, and yesterday is today for many in this very special place. Thank you for believing in me, It makes my heart smile to know there are those out there who really take time and care.I Will keep posting, and responding. sending my peace, care and blessings to you , thank you for listening thestorm
Hi Roarah, Twichytoes suggested I reach out to you, if thats ok???? It is now Sat. eve here, and I did manage to find a neurologist on line, closer to me. There office said that I do need a referral from my GP, to get the ball rolling. So that is a small step in the right direction. I am guessing you live here in the states to? If so you know we are not any better off than anyone else with crazy health care. Do you know of any creditable sites or forums that might give me some insight? Twitchytoes was so kind enough to clarify some for me. The past few days I apologize, I have not been myself, or well. So thinking clearly is brain -fog drain, sorry. I am going to call medicare here also on Monday and see what they may suggest. My utmost difficulty here is finding qualified Doctors, and then trying to approach my new GP for those referrals. I do not want him to think I am crazy, or anxouse, yet he should have noticed the distress in my face when I saw him with 'to much". I usually am more calm cool, and collected , yet this GP did not make me feel confident as I have in the past. I hope I m not a pest for you, I am open and optimistic most of the time Roarah, so if you have more advice, please let me know. Blessings for all your comending help to many people here, and thank you for sharing. xxx peace, thestorm
Storm, I am so sorry about this.
Call your insurance company and see if they have a service with a case or nurse manager available to chronic patients. After my stroke, the insurance company contacted me and asked if I would be interested in having a nurse from their company working with me to help manage my care or to address issues with me. It was quite helpful in facilitating my care in Connecticut.
I had my stroke on vacation in Florida so when I returned home I had no neurologist or cardiologist and the first patient visits were booked months in advance and I needed a after surgery heart check ASAP. Without my hospital files I could not expedite these appointments myself. The insurance company some how arranged visits with in four weeks for me to see specialists instead of three month waits I was being given. This nurse manager service was free of charge and was very helpful for me.
Is there a hospital near by? If so check their website for support groups. I found a stroke group this way. It only meets monthly but it is great to be with others who understand first hand the effects of brain damage.
Keep using your GP to " manage" your referrals rather than hoping he can help you feel better. GPs are good for bacterial infection and checking our blood, lipid and metabolic counts but not the big stuff. But we do often need doctor referral to see the better specialists.
Good luck, xo
Thank you for all that information, boy you have had your fair share also. I am so glad to here that you took charge of your care, and continue to do so. I only have medicare as my primary health coverage, But, I will be calling them on Monday to give them my story, and ask them about the chronic care manager. Great idea! For all my years, I have been in proactive charge of my health, and care, and my moms, and husbands ect. Just since we moved did this all tail spin on me. Lost in time, and space here. I will open all the doors that I can this week. Your advice has been of tremendous help, as have others, and I can't thank you all enough. Happy to know you, and for taking this time again to answer me. You feel well I pray, and keep on! sincerely, with my peace and blessings, thestormxx
I have no advice Storm, as I am in a similar position and overwhelmed and floundering but I just wanted to send you big Cwtches (Welsh hugs). I really hope things improve for you xx
I really do appreciate the hugs, from near and fare. They help me be reminded of the caring humanity here, and far away. Sometimes a hug is all it takes. Thank you for that. Peace, and I pray your position changes for the better too!!!! I'll keep you all posted. So if nothing,but, we can all learn from these experiences, and share them. Hugs to you, and Blessings thestormxxx
Thank youxx ❤️
I find my blood pressure rocket when I go to my GP and taking daily readings can be stressful in itself.
We have something called a hypertension nurse and I am due to see her soon for my first annual review. After many ups and downs on various drugs I finally got a bete blocker which is working and no side effects. However, my doctor recently caused a problem and my medication got muddled. I have now refused to do reading with any doctor but my own doctor whom you can't see for months so I do home once a week. I just got upset doing them daily as my arm was sore.
I have chosen a time of day I am most at ease and find it helped.
There is always a different reading at home than doctors. Health problems and body temperature can affect readings as well. I am afraid I didn't take the tablets you mentioned as I had previously found them hell. They went back at once and the new one issued.
I am sorry you got asked why or refused but by the way if you are dissatisfied with the doctors opinion or concerned about something you have every right to insist on a referral. I have the opposite problem, I am always being referred regardless. I would ask to see another doctor, maybe one who is known to spend time with a patient, explain what your concerns are and insist on a referral. You don't need a reason, another opinion is enough but it helps if they have some ideas as to get the right person. There may be other things they can try as well. Maybe taking a friend for support and writing down what you want to say.
Is a review possible?
Sorry I can't be more help.
Good luck.
I know what you mean with taking your blood pressure, ouch, sometimes I struggle with that darn cuff in the bathroom, and it seems to have a mind of its own!!! I try not to take it the same time daily because if I think about it, my BP just goes up. So I use the surprise method, and do it 2x's a day like that. When I first had hypertension my heart Dr put me on several types of medications to lower it. They all made me dizzy. So this kind Dr took the time to press on with me and tested that showed I have a condition called NOH-H. Very uncommon type. It was found that my blood pressure would rocket up for a time. Then it would plummet like a ball falling out of the sky. Yet, the testing showed I have a good strong heart thankfully. I am plagued with left sided chest pains, rib pain, COPD, and such, but no blocks to date. That is only one of my conditions. I can no longer see this good Dr, because of where I live, and she is 3 or more hours away. So for this one symptom that I tried to tell the new GP about, he said take the BP twice daily, see me in 3 weeks, stay on the Amlodipine . I do have my hubby to go with me to GP, but he has been unwell also. He is disabled to. I wish he was with me that day to help. We do the best we can here, and sometimes life gives us a rocky road. O' now I want ice cream, ha ha, rocky road ice cream is the bomb here. See you made me feel better just by reaching out. I truly thank you for your time too!!!! I hope you are on a good path yourself, and I will keep posting as this goes on. Grateful to you for sharing with me here in this uplifting hub. I send you my sincere peace and blessings thestormxx
Sounds like you have a lot going on, Storm, but stay strong, I am sure a solution will be found. Take care.
Hi my dear friend storm 🤗🤗🤗🤗🙏🙏🙏
I'm so delighted you have had such sound advice from everyone your friends here, they are all exactly right in what they all suggested an I so love even the Kindest support of the hugs from afar to you, such special friendship and care. It warmed my heart. 🤗🤗🤗.
My suggestion is kinda the same as your friends here. Definitely keep linked with your GP, but I also suggest that if you feel anyway off or are concerned about one of your health conditions, that you take yourself to the local accident and emergency hospital an say you are not well and need to be seen. Then once you have your foot in the door and see a doctor no matter how long it takes you to get seen,
Insist to that doctor after they examined you that will they please make a referral to the neuroligest and Rheumatologist for ASAP And tell them all about any Past surgeries and New health conditions you have been diagnosed with dear lass. 🤗🤗🤗
Also inform that doctor you where not happy with how your GP handled your appointment and if you where then you would not have to be in Accident and emergency department.
By going there with all your own chart file you have mentioned you brought to the GP and showing the doctor there an informing them you are not well an need medical assistance more than what a gp can offer, then hopefully you will be able to get the medical help and support you need. This is all I can suggest dear Storm an maybe give what I posted on Neurological function hope site a try and again hopefully you will have some pain relief. Sending you my friendship love and support with vibes of soft healing hugs with comfort and light dear storm chat soon my friend. Be well and keep strong 💪🤗❤️💐🙏😇
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