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Discussion Starter · #1 ·
Hi everyone,

I feel like i am going round in circles. In the last three months i have seen a rhumy, dermatologist and now a neuro opthalmogist, now i have to have an mri and see a neurologist, i am having prob with my vision and my pupils have been different sizes, its only my optician who is keeping me sane.

I went on naproxen and tramadol because i've been having prob with my joints which started last year when i was on hrt and had a suspected blood clot so they took me off. I was told i had rhumatoid arthritis but bloods were normal, then i was told it was a rare form of arthritis so i was put on naproxen and tramadol which sent me crazy and i woke up with my arms and legs flying in the air and i was completely mad and thats when i had visual problems and started passing out.

I have prob with my veins and a rash on my face which i took a pic of and off i went to see the rhumatologist who thought i was mad and tested my calcium. Was then sent to dermatology by my doc who saw the pic they said its ultricara and angeodema and put me on anti histamines which i can't take because they upset my vision and make me twitch again.

So off then i went to optholmogy, and had my pupils dialiated and told i need an mri and to see a neurologist but did not tell me what the problems is.

I am now going round in circles any advice from anyone because i am now thinking of writing the medical proffession off and trying alternative medicine. I think i would have more luck, the neurologist will now be the 11th consultant i have seen.

I also saw a councellor at my doc surgery who is a physciatric nurse who told me i am not mad and that it is physical. And an episode in 2007 was toxic shock to my medication. And said thats what happened this time.

Frankly I do not believe a word of what they diagnose me, i would get more answers asking the postman.

I have had enough and want my life back!!!!!!!!!!!!!!!!!!!!!!!!!!!

Natasha
 

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Hi Natasha and sorry for all that you have been through.

I wanted to tell you that your not alone. I went through 5 Neurologists, 3 Rheumatologists, 2 Hematologists, etc...and many years of wrong diagnosis before finally some answers became evident in my blood work and a clear picture started to appear.

It is very frustrating to go around and around with doctors and never have answers but you will eventually get some, you just need to continue to be patient. I have no good advice to give you but wanted you to know your not alone and you need to keep pushing forward until you get some concrete answers. They will come in due time.

Welcome to the board and glad you found us here. Join us in the chat room sometime.:wink2:
 

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Have you had bloodwork etc done??? seems as if you need somebody to join the dots!!! Keep asserting your right for some answers... and maybe a second opinion. Keep a log of symptoms..grade the pain 0-10 and photos. Start documenting evidence and take it with you to every appointment you have. You deserve to have some proper answers.. take care until you do. Not sure that you are on the correct meds either.. you need a preventative rather than a drug to 'mop up'... I wish you well,
Claire XX
 

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Hi, sorry you are having such a rough time. It is clear that something is wrong. I would be wary of adding in alternative medicine when you have no clear diagnosis. Kep a symptom diary and take photos of rashes etc. You will get there in the end, I know it is hard, but ou just need the right doc to put the pieces together. Let us know how you get on.

Deb
 

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Discussion Starter · #5 ·
Hi all,

The only bloods i have had done are for my calcium and rheumatoid arthritis. Because i was so ill and walked three miles in the sun to get to hospital on the day of the appointment with the rhumy he thought i was bonkers, it seems to affect my mental state.

I am currently off all medications. I went back to my doc when i had the problems with the antihistamines and he tried to give me different pills, i told him not to bother and that i will not be taking any more pills.

I have taken photos of the facial rash with the swollen eyelids, my boils, blisters on my middle fingers which have started to bend, but the rhumy told me i was double jointed!!!

Its just got to the stage now where winter is coming and the dark nights and i will now be able to hopefully function again.

What they don't understand is the effect it has on my two children.

The reason i'm thinking alternative medicine is because i have bad reactions to almost all the drugs i have taken and maybe a natural approach may be better for me.

I don't know whether to go back to the doctors, but i really have given up hope. I have been told by the ophthalmologist that i shouldn't be driving. Its like its taking everything away from me.

Thanks for your support it means alot

Natasha
 

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((((Natasha))))) I would definitely keep the appt for the MRI and the Neuro. He may be the one to shed some light on this for you, and as a fair few of your symptoms are his area then it would be a shame to give up now.

I think including GP's and specialists I saw 10 doctors before I hit the jackpot and got someone who really knew what was going on with me.

sending strengthening hugs,

love
Lily
 

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Your opthomologist is steering you in the right direction. The neurologist will be able to do some specific testing that may put all the pieces of the puzzle together.

Take care,
Lazylegs
 

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well said!

Well said, Natasha!! It straight up sucks when you go to a doctor, essentially putting your life into their hands, and have them be cruel or dismissive. Doctors hold the power to cure you or to completely violate you (in so many ways) and unfortunately you don't know which ones are good or bad until it's too late!

But at least it sounds like you do have some good doctors who are on your side and trying to help. I was in your position about a year ago, and I tried turning to alternative medicine to cure me. Unfortunately, because alternative therapies have traditionally been rejected in Western medicine, little research exists on the herbs or natural treatments that are available. Just like pills, alternative medicine can be very potent but have significant side effects (like Kava Kava or cannibis). But these drugs aren't regulated by anyone (at least in the US), so you are really taking your chances when you take them. Also, if something goes wrong with the medication (God forbid), you can't sue anyone for compensation for your pain and suffering, unlike with regulated drugs.

Don't get me wrong, I think alternative medicine can do wonders! My advice to you is to use alternative therapy, but don't give up on doctors yet! There are some good ones out there, you just have to keep fighting with that firey spirit I can totally tell you have.

One more thing, it seems to me like you are in the beginning stages of the grieving process, which I think you pretty much have to go through when you develop a chronic illness. You are angry..and I love it! I was angry too. I'm sure you will find your own way to acceptance and ultimately happiness...but what helped me out of my anger and depression was realizing that I was angry because I felt like I deserved all the things I had to give up. I felt like I deserved to go out in the sun without having to cover up all my skin, I deserved to be able to go jogging, or to take care of myself. I can't tell you what a relief it was to finally realize that I didn't deserve a THING. What gives me these rights? I don't even have a right to live apart from what other people give me. I certainly don't have a right to a good life or health. And I definitely am not entitled to be able to go out in the sun when I want to! Once I realized these things, it made me so much more grateful for the things I do have, because I know how lucky I am to have them. No one ever promised me that I would have the relief of a cold toilet seat on my hot face after throwing up (gross, sorry)... but yet, I have it!

Life is made up of experiences, and the more unique experiences you have (however unpleasant), the more you are living. You have a very rare opportunity to live more than most people, and though it may not be wonderful now, it has become impossible for you to take the world for granted. Don't give up hope!!! It's all around you!!!

xx
 

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Hi there,
I am really sorry you are feeling this way and that your exerience has been so damn difficult.

I just wanted to echo what everyone else has said in terms of trying to stick with etc.

I also wanted to add something. I am not what you would call an alternative medicine advocate by any stretch and I have made the decision for the time being to stick with the medical route however I just wanted to say that if you were thinking about this, then I would definately not read up and try herbs and preperations yourself. You can see a homeopathic consultant now, they have qualifications which basically are doctorates in herbs and their treatments. These people would have trained for 5 yrs and have extensive knowledge.

I did see a proper one once before, for something else, beofore I got Ill, she did a thorough medical assessment of me and physical exam, she took note of my medaications and the fact that I was diabetic and other health issues, she never advised me to stop taking any of the drugs I was prescribed. She was definatley really good and properly qualified. Which was really good. She never professed to cure me either, she just said that maybe by balancing out parts of my body better, using diet ad possibly herbs that I might do better from medications or other treatments and may perhaps be able to reduce them. She also referred to the fact that it may be nessecary to work with my gp in terms of checking blood etc.

I would just reitterate that you should do your research and make sure you are seeing someone who has the knowledge to treat you safely and is qualified.

I hope you manage to get to a ponit where you feel that someone is listening and taking you seriously and things can start to improve for you.

Good Luck and take care.

Cassie :)
 

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Discussion Starter · #10 ·
Thanks for advice

Hi all,

Thanks for all the advice.

I will keep the appointment i with for the mri and neurologist.

I have spoken to a herbalist, who said she needs to go into detail about my medical history and needs to know what medication i'm on.

I really have gone round the block with doctors, i get told one thing then another then something different, i just feel as if i am working my way round every department in my hospital, now another scan. After my clot last year i decided to take a year out from doctors and hospitals, i had abnormal cervical cells before i had my hysterectomy which had spread to my vault as they call it, i thought the hysterectomy would have sorted them but they didn't and april this year they thought i had vaginal cancer. Luckily for me it came back ok. I only went to the appointment because i was 4 months overdue for my smear and my doctors kept writing to me.

I am 34 years old and i have spent £4000 on private treatment over the last 6 years trying to find out why i feel so ill.

I do appreciate your advice.

Natasha
 

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Hi Nat,
Same here with me, i feel i'm going round in circles as well, hang in there it will sort it's self in the end, it just takes time that's all.
Hugs.
 

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Yes it sure can take time and plenty of mis diagnosis before they get on the right page and figure it out. You have put out a lot of money to get some answers and that in itself is very frustrating I am sure.

Keep fighting the fight and you will get answers. I used to tell myself good things come to those who wait.:rolleyes::rolleyes::rolleyes:

I hope you get some concrete answers soon. Keep us posted please as to how you make out moving forward.:wink2:
 

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Discussion Starter · #13 ·
Hi everyone,

Thanks for all your support.

I just thought i would update you on my situation.

I have my mri on friday and my neurologist appointment is for the 3rd november.

This morning i have changed to a different doctors surgery.

Does anyone else suffer with thrush i keep getting it everywhere!!!!

I am feeling alot better than i have been but i'm trying not to overdue things.

Natasha
 

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Hi Natasha,

Just wanted to wish you good luck with your MRI and the Neuro appt. :hug:

A lot of us have problems with thrush everywhere........I find that taking an Acidopholus capsule daily helps immensely. You might want to make sure this is on your medical notes too, it's not uncommon with autoimmune diseases.

Take care and let us know how you get along.

love
Lily
 

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Discussion Starter · #16 ·
Hi everyone,

Thanks for all your support!!

Took the kids for an eyetest at my opticians and finally found out what my optician had seen when he checked my eyes, my optical nerves are inflammed.

Been to see my new gp who was fantastic, i have been having trouble sleeping on my back for ages and he sent me for a chest x ray. Also hes testing my liver and kidney functions, thyroid and glucose and protein and inflammation - what ever that is for?

Went for the blood test on tuesday but the nurse was unable to get any blood because i am deep veined, after three attempts she gave up. So got to go back next tuesday, told me to drink plenty of water.

Not feeling too bad at the moment, got the vision thing under control - by resting, i'm still just pacing myself, its a long wait till november 3rd for the neurologist, but if my gp can shed some light on things its got to be good. My only worry is having to have more tests and having to go back to the rhumy who told me i had physiological problem!!!!!



Natasha
 

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Hi all best glad u chanegd gp well done,

i to have often had thrush problems wasnt told auto immune but i have ra,so makes sense and possible lupus.
calm thoughts for mri have u had 1 before?
countrylass:)
 

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I have zero medical experience so don't take my word for this, you should research these things for yourself... but your doctor MAY be checking your thyroid to see what the function is, so that he can rule out hypothyroidism or hyperthyroidism. Glucose is your blood sugar, whether you have high or low blood sugar can signal some endocrine disorders, like diabetes. Liver and kidney function can be affected by a lot of different diseases (some autoimmune), so he's probably checking not only as a diagnostic tool but to make sure your kidney and liver are working well and don't need treatment. Not sure about the protein. Maybe C-reactive protein? I think that is to check for inflammation in the body. If your blood work shows inflammation, it might narrow down what could be causing your symptoms, but it won't really point to the cause by itself. But it may help your doctor to know how to treat you. For example... if you have inflamation, steroid treatment may be an option.

Good luck to you!!
 

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Discussion Starter · #19 ·
hi,

Its the first time i've had an mri but it went ok.

Had a really bad day yesterday, so i stopped in all day, my vision played up big time, think the gardening had caught up with me.

I have insulin resistance but not diabetes and have had my thyroid checked more times!! My glucose is always always normal my endocrinologist explained that to me a couple of years ago when i was diagnosed with pcos.

At least my doc is doing bloods!

Natasha
 

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Discussion Starter · #20 ·
Just a quick update.

Thyroid, liver, kidney, inflammation and protein all normal, glucose slightly high got to have glucose tolerance test. Gp said its not arthritis.

Been having major probs with my hands, tired paracetamol, rubbing vickes on, elma cream, bath, hot water bottle and heat pads. In the end i resorted to a bottle of wine. Doc given me paracetamol and co codamol, which i've had before and it makes me hallucinate. He said it could be nerve pain and to mention to the neurologist.

Roll on november

Natasha
 
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