Hi everyone! Not posted on here for a while. Going to try and keep this as short as possible. I really need your help as I am literally at my wits end now with my health to the point where I have contemplated suicide as a "way out". I know it sounds weak, however I am struggling really bad and have literally NO control of my life anymore. I worry so much that I am deemed a hypochrondriac or psychiatric, despite having physical problems that are visible via tests etc!!
I am 28, before 2010 I was a completely normal 24 year old who was loving life and living life. I was on the career ladder, modelled part-time and had a great social life. All I had "wrong" was asthma that was well controlled. It all started when I had a random ring rash all over me in 2010 that dermatologists said was pityriasis rosea and then i had a swollen left knee and pain. The rash looked like lupus or psoriasis, burned like hell and was all over me apart from face and hands. After that it has been a domino effect with my health and things have progessively become worse, I lost my fulltime employment and had to go part-time, all aspects of my life have been affected social, relationships, financial, mental etc. My quality of life has not been good at all and I struggle with a lot of normal "daily activities". My GP surgery is very busy and has about 7000 patients for 3 GP's. The "care" at my GP surgery has worsened over the past year and I have not been managed well or monitored and pretty much just get given pills and told to go away until next time! I am now at the stage that due to my sick leave I am facing termination of employment. I studied hard to get the job I have now (I.T), they have made lots of reasonable adjustments but I just can't manage anymore. I struggle even meeting a friend for an hour or two just for a coffee never mind anything else! I have seen a few specialists, some were great, some not so great! I now feel these days that I am looked upon as a hypochondriac or a malingerer when that is not the case! I want to get on with my life and reach all the "normal" milestones for people my age and start feeling some sort of well being. I will try to explain as full as possible below and keep it short as possible (it is so complex sorry).
-received H1N1 swine flu vaccine in 2009 and didn't feel "right" afterwards
-had a total thyroidectomy for a large goiter in 2013 that was full of abnormal cells, had 1 parathyroid removed too as it had an adenoma and I had high levels of parathyroid hormone.
-diagnosed with fibromyalgia in March 2013 for widespread chronic pain that had been present for over a year
- Asthma, rhinitis, nasal polyps. Skin allergies that have left scarring.
- Also have interstital cystitis & urethral stricture (diagnosed 2012 by urologist) ALWAYS have inflammatory cells in my urine without infection , raynaud's (2012) and asthma (1998)! Never ever got to the bottom of what has caused all my chronic health problems.
- I catch about 6 infections a year or more and ALWAYS need antibiotics. Have been hospitalised twice for infections that went systemic. This has worsened over the past 2 years. Never had any further immunological testing, all immunoglobulins are normal! GP has never investigated any further with regards to my immune system.
-Absorption problems with vitamin D and B12 and swing a lot from being deficient to being normal, despite being prescribed supplements.
MEDS:
Duloxetine 40mg (prescribed by rheumatologist for fibro & depression) was on 60mg but felt like I had complete apathy on 60mg and it wasn't helping my pain.
Amytrtiptaline 50mg (prescribed by rheumy for fibro, to help sleep at night) makes me drowsy but couldn't sleep without it
Pregabalin 300mg - was on this for nearly 3 years, and weaned off this year as I felt it wasn't helping and was too potent to continue taking when it was doing me no good!!!
On various painkillers, baclofen for when my neck gets bad, dihydrocodiene for when my general pain becomes unbearable!
Instillagel and flavoxate with catheter administration tip for bladder issues.
At 28, these symptoms below are scary!
New symptoms that have worsened over the past year:
- SEVERE stiff neck that contorts my head and I cannot turn my head left or right for about 2 weeks then it subsides again
-Fatigue - can be so bad that I am only awake for 3 to 4 hours per day
-Problems with temperature and sometimes sweating profusely then being the complete opposite
-throat "collapsing" sometimes when talking or walking or doing physio, sometimes even when eating
-muscle twitching & spams, in calves, face, hands and feet - docs have witnessed this
-muscle atrophy in neck & lower leg muscles
-general "fibro" pain which hasn't responded well to ANY of the meds I have been given over the past 3 years. Pain interferes with my daily activities, I can only work part-time and struggle even with that. Interferes with my hobbies & social life & love life!
- Since coming off pregabalin I have noticed I have terrible restless legs that start at about 8pm each night, my legs become so heavy to the point where going upstairs can be impossible, my legs will then twitch/fasiculations and a creeping sensation and I can be up for hours dealing with that during the night!! At 28 it is a pretty scary symptom to be having!!
-Numbness on left side of body mainly on head, neck and foot!
It has taken over 20 months to stabilize my TSH and I experienced many swinging period of hyperthyroid & hypothyroid states that were quite extreme. Sometimes I wonder what the long term affect of being hyperthyroid for so long has done to my nerves.
Seen a neurologist a few weeks ago, who was completely obnoxious. Did her assessment of me, said the only thing she was concerned about was the numbness and I had showed her a video of my facial twitching. She said she thought it was "hemifacial spasm". I then asked if this could be linked to the twitching of my legs, hands etc! Hands get so bad sometimes that I drop things and it can be so noticeable that people will say "Gosh your hand is shaking". I had an MRI of my neck and brain with contrast and it showed NOTHING!! which made me feel sick as i thought is this all in my head? Am I going mad??? The neurologist said she felt it was all linked to the "fibromyalgia", however myself and my family are not happy being told this anymore? I also know others with fibro and most of them are over the age of 40 and do not have twitching etc.
My questions and if anybody can answer I would be SO grateful. I do not want to sound like a hypochondriac or a nutter who has been googling symptoms, but lets face it, when you are scared of what is happening to your once normal body, you become desperate?!
I have been tested for rheumatoid arthritis, inflammatory arthritis, lyme disease, syphillis & HIV (yes!!!), normal calcium and magnesium levels, lupus etc etc...........
Things I HAVEN't been tested for that I wonder I MAY have, and what on earth do I say to my GP regarding these without sounding like I am insane/hypochrondriac?........
- Young onset parkinsons? - since MRI etc cannot diagnose this and I have severe restless legs, twitching, throat collapsing etc
- Peripheral neuropathy - obviously have had a lot of endocrine problems that were long standing and wonder if there has been damage done and this could explain all the "neurological" symptoms. Never been tested.
- Underlying kidney problem? - Could I have an underlying kidney problem that could maybe explain the inflammatory/white cells in my urine, without the infection? Also the flares of the interstitial cystitis.
- Possible vasculitis? i.e. Churg Strauss syndrome as this can cause the white cells in urine, asthma, chronic allergies, nasal polyps (Which I have), scarring of skin etc?
Lots of people say fibromyalgia fizzles out or gets better in time - I seem to be getting worse and this has been 4 years of symptoms now? I also don't respond to ANY of the treatments I have been given. I have had acupuncture etc, tried exercise, physio etc etc NOTHING helps.
If any of you have ANY idea what is going on or if you experience something similar please get in touch? I don't want people thinking I am nuts!
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cocobella
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No you're not "nuts". Of course that is my unqualified opinion.
My wife has poly myalgia rheumatic on top of her fibromyalgia. So I am sympathetic to your condition.
Doctors have their opinions. Some doctors may not be as attentive or they miss dx.
My wife kept telling (several visits) something was wrong with her health. He kept replying, Oh your fine, there is nothing wrong with you. Finally at the encouragement of family, my wife found the right specialist and he knew what was the matter as soon as my wife walked into the exam room.
Search HU for a forum that more suits the description you presented. Join.
Consider other options. I understand this suicide contemplation. I do not get the impression that you really feel that is a viable option.
Thanks so much RoyProp what a lovely response. A friend of mine who I met at one of the support groups has polymyalgia rheumatica and she is in her 60s and that is such a debilitating illness. I have even mentioned this to my GP and was told "too young", however I also don't think total surgical thyroidectomies are considered common in someone aged 26.
Thanks for your advice, yep the suicide thought is always creeping about in the background, then the happy/social/fun person inside me gets angry and says lets get to the bottom of this and get fixed!!
You are a very courageous person, to have this much to deal with.
When new symptoms come up for me, I suffer all the insecurities, then I get angry!!
The anger drives me to find out what is causing this and that, and what are the coping skills?
Do not give up. We can help ourselves a lot!! With the right information.
Keep talking to us.
I will keep encouragin you
Love and hugs, Eva
you don't sound like a hypochondriac at all. You do sound like you have a lot of toxic symptoms. Naturopaths can be helpful for that, and skin issues, just make sure you get a good one. I do colonics and find them to be very
helpful and fast at making me feel better. DONT give up, there are poeple out there healing themselves everyday, and look for your support, and if you cant research your symptoms to treat the toxicity, etc. then have them help you.
Every neurologist or doctor is different and they look for and at things differently. You shouldn't tolerate an obnoxious care provider, ever. Get a different one if you can, someone who is truly interested if you can switch. Hang in there!!!
Have you cut out sugar and added the good fats (which the brain loves) ????
Get some good solid care and advice, there are people out there that think outside of the box and have come up with good solutions.
I am getting better and Im 57, because I didn't give up.
I suggest you contact a good orthomolecular or naturopathic MD and ask for a Spectrocell test, a food sensitivity test, a 24 hour saliva cortisol level test, stool sample test for yeast and unfriendly bacteria among other things.
You need to stop diagnosing yourself as you are unqualified to do so and will jump from symptom to symptom. What you can do is avail yourself of the above tests which, though costly, will tell you the nutrients in your cells and therefore you will know what supplements to take to boost yourself. You will know what foods to steer clear of to keep from stressing your system.
You will know what effect adrenaline is having on your cortisol level, if any, and might account for fatigue, sleep problems, etc. you will know if there are any yeast or bad bacteria issues which should be dealt with.
Btw...'normal ' levels of ca/ mag? Blood levels or cellular levels? Spectracell does the latter. I have normal blood levels but am always having to supplement to keep from having trigger spots, hand clenching, sore muscles, etc. I used to get those so often I didn't even need a test to tell me I needed magnesium. Took it and...symptoms gone. the deficiency showed up on Spectracell but not in regular blood tests.
Good idea, something I have never heard of. I also know what you mean about "cellular level" as it took AGES for my thyroid problems to finally die down due to them not being correct at cellular level. Really appreciate your feedback
sounds like several problems 1st is parkinsons 2nd is parkinsons 3 rd who knows . i would ask for a movement disorder doctor not just a gp or neuro dr. ask for 1 week of carbodopa- levodopa meds 25-100 mg if it helps you may have some kind of parkinsonism ( look it up on google ) DO NOT TRUST THE AVERAGE GP OR NEURO DR
Hi Cocobella, I have read some interesting things about MSM or methyl-sulfonyl-methane, which is found naturally in food, for detoxification. All the best in getting it right. xo
An MRI won't reveal whether or not you have Parkinson's. You need to have a DaTscan, and shame on a neuro who does not tell you that.
I began doing Tai Chi and Yoga and found both to be hugely helpful in mitigating the symptoms as well as instilling a sense of peace.
lpaul is right. Don't rely on a GP or "regular" neurologist -- go to a neurologist with a specialty in movement disorders. It can be easier to find great doctors sometimes if you go to a clinic that is part of a teaching hospital, are you near one? They tend to have seen and learned about just about everything!
Sometimes depression can really get the better of you. I sympathize! I know how to find a local support group in the U.S. but not England, but I'll been a little googling will get you there. I always leave a support group feeling energized and upbeat. And there's us! But first things first -- you need the right tests, which will lead to a diagnosis.
Have you been tested for APS(antiphospholipid antibody syndrome)?This test has to be done over a few weeks three times,There are quite a lot of groups on FB but course you can google it, Was diagnosed in 2003 but had syntomes since puberty,H ave had 5 pulmonary embolisms plus DVTs and have been on high doses of coumadin since 1977.
Thanks for your advice. I haven't been tested and I also haven't heard of it. Just looked it up and I do have some of the symptoms, but I suppose a lot of my symptoms can tie in to a few things. I will ask about this at my GP's office though. Thanks again
Thanks everyone. I am actually blown away by the amount of you that answered and in detail too. I now have some further options to consider and will try them out. I will literally try anything to get to the bottom of this. Will post an update in a few weeks once I have seen my GP and researched further testing etc.
I'm not a MD but I wonder if you wouldn't benefit from anew fresh sorting out by a master diagnostician.... Internal medicine would be my choice. Also a DAT scan for pd is the closest definitive objective test for pd. good luck
It takes courage to share your story and it is ok to feel how you feel because of what you are going through.
I would suggest to see your rheumatologist again and ask for these blood tests. A complete blood count (CBC), P-ANCA and C-ANCA, C-reactive protein (CRP), erythrocyte sedimentation rate (ESR). Review the blood test results with the doctor and listen to what he/she has to stay. If needed possibly ask questions about possibility of autoimmune diseases. See a respirologist and Ear-Nose-Throad (ENT) after you have seen the rheumatologist and review the the blood results with them as well. As usual, keep your family doctor in loop of all things and discuss each specialist visit with him/her.
Take care and know that you are good person. How people perceive of you is not important (unless it is positive) because it is hard for some people to feel your pain. I hope you heal soon.
hi, is your B12 deficiency being adequately treated, if at all? Try the Pernicious Anaemia Society group here for more info. The symptoms of Deficiency can mimic quite a lot of neurological disorders. There is also a good video on You tube by Sally Pachalok who is a U.S. expert on it.
If you can ascertainn whether or not you have such a deficiency and are able to rule it out (there are a lot of problems around diagnosis, but you've had it diagnosed before and ought still to be receiving treatment? ) then you should definitely see a movement disorder specialist.
I had a fibro diagnosis for a while, but didn't really fit the picture at all, and amytriptiline had me on the floor with tiredness straight away. I stopped it after three days but got mistakenly persuaded to take it a again some months later, practically had to be scraped of the floor, it's now marked down as a drug I should never be given. Read up on the side effects, it's supposed to be very innocuous, but isn't, and you say it makes you feel tired.
Best wishes with this. These nonspecific conditions are tough to diagnose especially in younger people, but hang in there, you know your body isn't functioning well, and are able to contrast what you once were like with how you are now.
Something you might think of doing is keeping a fairly minimal but accurate diary of how it affects you in your day to day life.
Hiya Lindylanka thanks for your very informative response. I did have b12 deficiency last year and folate too. I found it so odd as I do eat a very varied balanced diet. Anyway, was put on supplementation and thought "yes 😃 all the neuro symptoms should go" and they didn't. Fatigue lifted a bit but generally never felt much difference. I had those bloods repeated about three months ago and they were all fine again which was good. I may ask to have them rechecked again along with thr vit D. I take regular multivitamin and am prescribed vitamin D as I have always had problems with low vit d which has affected my parathyroid levels.
Forgive me if I am being rude, you said you had been given a fibromyalgia diagnosis, did you ever get to the bottom of what was wrong?
You are aware that if you have b12 deficiency you will need to have treatment for life? You report having neurological problems, these likely will not resolve quickly, the nervous system heals slowly in general though certain symptoms can resolve easily. There are also issues of diagnosis due to flawed testing, a lack of awareness in the medical community and more. The British Formulary advises every other day injections until there is no further improvement or those with Neuro symptoms. The PAS site here on HU is very helpful.
As for the fibro diagnosis I thought it a nonsense, it didn't fit my symptoms at all. I connected with an online group for a while as I had refused any other antidepressant offered in place of amytriptiline on the basis that I was pretty happy and unstressed at the time and was sure the symptoms I had were physical. I hung about this group reading for a few years and then asked the question do you think this is fibro, and the answer came back, no these sound like Neuro problems, so I went to my GP. She, without any prompting said she'd refer me to a neurologist. Well to cut a long story short I was diagnosed with possible Parkinson's disease, have been on sinemet, which helps, for 12 years and have had 2 negative datscans, though I'm still being treated for PD. I'm told that this makes me a SWEDD, which is someone with a negative scan but who has something that is clinically indistinguishable from PD. I was diagnosed with b12 deficiency over three years ago, and have not had a good journey with it, I'm one of those who needs frequent injections.
Wow this is crazy!! what a time you have had! I know what you mean, the fibro thing just doesn't "lie" with me, it never has to be honest. Problem is, I saw the neurologist who is a movement disorder registrar, and she never thought it was anything other than benign "spasms" pah!!! considering I am only 28 and do not know ANY other person my age with my symptoms it doesn't make sense. The vitamin B12 thing, they tested my blood 6 months ago or so and it was back to normal again, I don't have pernicious aneamia, just B12 deficiency due to either malabsorption or something (As far as I know) as I eat a balanced diet and take supplements! The parkinsons thing does make me wonder, as I have restless legs in the evening that are unbearable and I know it can be linked to parkinsons. The fact I have seen the neuro and no DATscans etc were organised makes me think she does not think it is a parkinsons. However, she was VERY dismissive to my mother and I and just kept saying "you are on too much meds" because she was looking at an OLD list. I said "no I have come off LOTS of meds, plus SPECIALISTS prescribed the meds". Made me feel like I was a junkie or something! Eugh!!! Anyway, thanks so much for your help XXX
If you eat a balanced diet you should not have b12deficiency. Your test result will come back as normal if you had a shot or you were treated with folate. It doesn't mean you don't still have a deficiency. ALL b12 deficiency should be treated as if for PA. this is to prevent neurological damage. In fact PA is very misunderstood, it is actually an auto immune disease which is progressive without treatment. You should be getting, if you live in the U.S., a shot of cyanocobalomin once a month, especially if it has been described to you as probably malabsorption. This is caused by loss of specialist cells in the stomach lining. Only vegans get PA through poor diet, or people who neglect their food intake and omit all sources of protein. If you are not in this category and haven't had significant recreational or medical use of laughing gas you might reconsider your options. It's not like being low on vitamin C, it's a very damaging deficiency.
HHV-6 has been associated with various clinical complications, including roseola, chronic fatigue syndrome, multiple sclerosis, encephalitis, and drug hypersensitivity. Although nearly everyone is infected with HHV-6 in childhood, only a small percentage experience reactivation of HHV-6 later in life. Moreover, many of these reactivation events never cause symptoms. However, evidence has shown that HHV-6 reactivation can occur occasionally, ......
I hesitate to say but i see many of your symptoms on these pages so i think it could give you some answers. Will be very interested in what you think.
I have had to use Alternative providers approaches for care as the MEdical profession seems to not have any safe answers. I am 62 with a PD diagnosis 4 years but years of complaints that sound like you. I have done stem cell treatment for hope.
check this out for a trial of treatment to find a Dr that will script it. I use a Homeopathic MD. LOW DOSE NALTREXONE THERAPY. Google it and see if it sounds worth a trial. I have reactions to most drugs but I want to try this as it is not supposed to have side effects as it is 4.5mg instead of 50 mg dose. Best wishes for you---I understand .
Thanks so much I really appreciate your answer/. I hope you get somewhere with these alternative treatments. It is a shame that many of us are suffering despite having the NHS etc. xxx
You mentioned that the immunologic had ruled out immune disorders but have you been tested for a muscle disorder? my daughter saw doctors for 12 years who speculated that she might have lupus, cancer, fibro, etc. Things got worse when her muscles began to deteriorate but when she was taken to the hospital, they did a CK blood test that showed a link to dermatomyositis, a muscle/skin auto immune disorder. You have stay on course and be oersistent.Many of these auto immune disorders gave multiple comorbiditues
Thanks for your comment redread. I did get a CK blood test back in 2013 and it was negative. However, I wonder if it all works the same as when I had my thyroid biopsy in 2012 completely normal, 6 months later severely abnormal with potential cancerous cells! It changed very quickly, as did my TSH level. Who knows? I was at the GP the other day and they are very wary to go sending me to more departments as I have already been to quite a few already! So once again, I am left in limbo, in pain, exhausted, about to lose job etc etc lol.
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How I manage my symptoms, hoping to slow down progression of Parkinson's Disease.
I am not convinced that I have PD. Could anyone tell me if they have had any of these experiences?
YES I am still on Coconut Oil, aka CO
Increasing my dose of B1 after 4 years and 7 months
