Could i have been mis-diagnosed? Could i have PD?

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Hi All,

My name is Claire and I’m after some advice. My main questions are could my Fibromyalgia diagnosis incorrect? Could i have Parkinsons Disease?

So, this is me and some of my story.

I’m 37 years old women, I have been rather poorly for just over 3 years with so many symptoms and more joining every month, so much so that my GP thinks that they are all in my head, and that I’m paranoid, he told me no one cares that I’m using a walking stick, they have better things in their lives to worry about then me. They’re not looking at me, they’re not interested in my issues and I need to get over it!..yes, he said that and yes, I now see a different GP, after that conversation and me walking away from the Surgery in floods of tears my family stepped in and made sure I now see a different GP in the same Surgery. My new GP is Amazing, and she shows care and concern and has told me I’m not crazy and this isn’t all in my head! Thank God! :face_holding_back_tears:

Okay, here we go!

I have every symptom possible :see_no_evil: with the main one being widespread pain in my muscles, joints, and bones (dealing with the pain really tires me out). This with heart palpitations and extreme tiredness is where it all began. These were my first symptoms that stood out for me to take notice.

After extremely long waiting times in the NHS, which can’t be helped because so many people require help, my family made the decision to pay for me to go to a private hospital for help.

One year ago, to the month, the first team we paid to go private to see was a neurologist and after many neurological tests it all came back fine. And he suggested we now go and pay to go private again, this time to see a rheumatologist who saw me once, requested more bloods and when they came back fine, apart from still being anaemic, he barely looked me over and gave me a diagnosis of Fibromyalgia. He gave me some meds (duloxetine) and sent me on my way, and I haven’t seen him since! That was April 2022.

Between my GP, Pain clinic and GP Pharmacist. I’ve been on so much medication, but nothing seems to help.

My medication list I’m currently on.

Pregabalin 200mg 3xdaily

Naproxen 500mg 2xdaily

Duloxetine 60mg 1xdaily

Zapain 30mg/500mg 2xtablets as & when needed

Omeprazole 20mg 1xdaily

Cyclizine 50mg 3xdaily

Folic Acid 5mg 1xdaily

Fultium D3 3200u 1xdaily

Prochlorperazine 5mg 2x when dizzy followed by 1xdaily for 5days.

Fostar Inhaler Daily usage.

As of a few weeks ago, and lots of discussions about how I feel and that my diagnosis just doesn’t seem to be correct because none of the above meds are helping and I have this horrible niggling feeling that this isn’t the correct diagnosis, and this might just be Parkinsons Disease.

My GP took notice when I told her my concerns, and decided we need to change but a change to what I don’t know, and she mentioned nothing about getting in touch with a Parkinsons specialist?.:woman_shrugging:t3:

So, they are now taking me off some of the meds above so we can try some new meds and see if they help.

They are currently taking me off the Naproxen (which I’m now off), currently down to 75mg of Pregabalin 2xdaily. And eventually once off Pregabalin in 3weeks time I will then start to come off the Duloxetine.

Whilst I’m coming off the Naproxen, Pregabalin and Duloxetine, I am currently on.

Servredol (Morphine Sulfate) 20-30mg 2xdaily. Followed by top ups in-between if needed. This is to take the edge off my pain.

Out of all my symptoms of “Fibromyalgia”, most of them match up with symptoms of Parkinson’s.

However, I don’t have tremoring hands, but my hands are shaking (like a weakness shake), and I also get it in my legs and feet but mainly on my right side. Plus, I have so many more symptoms I can’t keep track of, but my main issue is the widespread pains & stiffness.

My newest symptoms are tingling and itchy skin, mainly on the end of my nose (it’s crazy, and I look crazy continuously trying to itch it :lying_face::crazy_face:) but my back, arms, wrists and legs are tingling all the time. I have constipation with a strange feeling from my anus and lower tummy when going :see_no_evil:.

Since coming off the Naproxen and Pregabalin I now can’t sleep at night (these made me very drowsy and they made me sleep all night and most of the day), but I have no problems falling asleep randomly in the day time still and I have such vivid dreams, sometimes when I wake I’m not sure if what I dreamt was real or not, it takes a while for me to get my head on straight and realise that they was dreams (I’ve been told I talk very loudly and very clearly in my sleep, which is strange because I have trouble talking normally when I’m awake!).

Extremely dry mouth, which is making it more difficult to swallow, smaller bites are needed and lots more chewing. I’ve no appetite at all and can go days without eating. I do try and drink as much water as I can, but I just don’t enjoy it, but I also don’t drink much else except 1 maybe 2 decaffeinated teas a day. I did drink coffee a fair bit until recently as I’ve gone off the taste, and I only have decaff tea and coffee (if I do have it) as I found caffeine makes some of my symptoms worse.

Now my voice has started to go croaky at random times, but I don’t have that feeling of wanting to cough to clear my throat, it just comes and changes on its own.

I do walk slow anyway because of the pain and stiffness, which in turn also causes dizziness and makes me unstable and I lose my balance quickly and I have had many falls and thankfully not broken anything except my pride. But I do always walk with a walking stick and at times I even require a wheelchair to get around.

A lot of my other symptoms include, terrible brain fog, heart palpitations, headaches/migraines, simple problem solving issues, anxiety, depression, moods, reduced libido, apathy, fatigue but I’m unable to sleep at night and I have crazy dreams/nightmares, restless legs, and 9 out of 10 times my words come out all muddled and gibberish and don’t make sense on first try, or I can’t get words out at all.

Now about my family history.

My Uncle on my mother’s side, god rest his sole, passed away one year ago due to problems and complications in hospital. Unfortunately it was his Parkinson symptoms that were what put him into the hospital, and whilst in there he then became poorly and had numerous bleeds on the brain which he continued to fight for his life for a good few weeks, but unfortunately in the end there was just one to many bleeds and he lost his fight. He is extremely missed, and I wish I could ask him questions about it all, but he is in a better place now. :pensive::innocent:

Also, his Grandfather (my great grandfather) also lost his life to issues caused by his Parkinson’s symptoms. So, as you can see Parkinsons does run in my family on my mother’s side, and this is a very scary and very real concern for me.

So, my main questions are.

  1. Has anyone here been through the same sort of thing and been mis-diagnosed and been told they have Fibromyalgia or something similar but further down the line been told, actually, you have PD?

  2. Am I thinking too much into this, was the first GP right, is it all in my head?

  3. How do I get someone to investigate this and check me over and my symptoms? Who would be the person to decide if it is or isn’t PD?

  4. What do I do next?

I am very scared, emotional, and exhausted, I do have an amazing supportive family, but thanks to the first GP, I now doubt and pause at everything, I’m very insecure and feel I need reassurance and my family must be extremely fed up of listening to me and my problems, having to do everything for me whilst I just sit there watching the world go by. They must have just had enough of it all by now. I know I definitely have! :disappointed:

Can someone please help me, i just don’t know what to do and which way to turn :disappointed_relieved:.

I will look forward to hearing from you soon.

Claire xxxx

Ps.

My GP has set me up with different help and support for my Fibromyalgia diagnosis. These include.

  1. Physiotherapy every 3-4 weeks via zoom or face to face.

  2. Mental health Counselling every Friday via telephone.

  3. 12week online pain management course.

  4. Tia Chi via zoom every Thursday.

  5. Pain Clinic check-ups every 3-4 months over phone.

  6. GP regular check-ups every 3-4 weeks.

  7. GP pharmacy every 2 weeks for medication check via telephone.

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Hi Claire and a warm welcome to our forum. You’ll find everyone here very friendly and supportive and they’re sure to jump in to say hello soon.

First, of course you are scared. I can’t imagine anyone who wouldn’t be. I’m sorry to hear that you didn’t feel listened to when you saw your original doctor, but how fortunate that your family were able to help and get you in to see someone you are now comfortable with. It’s a good first step. It also sounds like you have a lot of in-person and virtual support for your current diagnosis which would be helpful to you in any case.

It sounds like you’ve told your doctor that you suspect Parkinson’s but they aren’t confirming this. Only a doctor can diagnose Parkinson’s, but you can read more about it on this page: Do I have Parkinson's? | Parkinson's UK. What I can tell you is that although everyone’s experience is different, there are three main symptoms: Tremor (shaking), slowness of movement and rigidity (muscle stiffness). We also know that Parkinson’s doesn’t usually run in families and you can read about this here: Does Parkinson's run in families? | Parkinson's UK.

Please do read through our site. There’s a lot of useful information there. We also have a helpline with advisers who can support you and answer any concerns you may have. You can reach them on 0808 800 0303.

I hope there are some answers soon and wish you all the best.

Janice
Forum Moderation Team

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Hi Janice,

Thank you so much for getting in touch it means a lot, especially at 2:30 in the morning. :see_no_evil:
I will definitely have a read through the links you have attached hopefully i might find something in them that could help, or at least give me some new information i didn’t know.
Ive already been having a read through some information ive stubbled across when perusing the forum. And ive definitely enjoyed reading some stories and journeys that other people have posted.

I will look forward to interacting with others at a more reasonable time and finding out what people have been going through and dealing with and finding out if there is anyone on the forum with the same sort of story as my own.

Take care, and enjoy the rest of your extremely late evening or extremely early morning.

Claire.x

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Hi Claire,

Have you considered early menopause? Many of your symptoms sound like menopause symptoms, palpitations, brain fog, joint pain, insomnia, dry mouth, anxiety, mood swings, problem solving, depression etc. It might not be the solution but it could be making things a lot worse. Might be worth having a chat with a gp and looking up some menopause webpages on it such as; balance menopause. Whilst your only 37 it is not uncommon for women of your age and it might help relieve some symptoms.

I hope you find a diagnosis and the right support.

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Hi,

Yes menopause is something ive already mentioned to my GP about. They did some more blood tests for hormones and apparently they came back fine and he said no not menopause, but your too young anyway. Then the gp just closed the book on that one!

I honestly felt like he didnt want to help. Ive read so much information about different possibilities of what it is im going through and what ive read about perimenopause, im not too young, im at an age where it is entirely possible that i could have started menopause early.

Thank you for getting in touch xx

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Hi Claire,

Your GP sounds unhelpful when it comes to menopause.

Might be worth listening to Zoe Podcast about menopause and how unreliable blood tests are.

It might not be a solution but could maybe help.

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Thank you, well give it a listen. X

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Hi Claire,

chipping in only to say the nose thing I can relate to and yes I was diagnosed with FND 2021, told giving up work would cure me, then diagnosed with PD this week so yes it does happen. I was in one way shocked but in another not knowing the deterioration was occurring and that FND just didn’t sound right so don’t panic, no material difference for me really at the stage I’m at, but do ask to see people to interact with you, see you, hear you. I did have a video consult Feb this year where the FND diagnosing consultant wanted to close me and I did go back round two my GP who got me another appointment with my local server ice and this new diagnosis. I should say I am awaiting a further MRI to confirm the consultants certain view so everything could change again of course. We know our bodies very well. All the best to you, Mark

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Sorry to hear that you have been going through so much Claire. It sounds very stressful. You ask about potential mis-diagnosis.

My mum has had Parkinsons for 20 years so I have lived through the symptoms. I suspect I also have it myself though am undiagnosed.

The nightmares and the shouting out are something my mum did experience for years, along with bladder and bowel issues. A general feeling of ‘slowing up’. My mum was diagnosed at age 62. I am 52 now. A lot of my symptoms could also be confused with menopause.

I have seen a neurologist through my GP. All routes lead back to the GP. I would ask to be referred to a Neurologist to investigate Parkinsons. Explain that you have it in the family. Once referred, they can do their checks based on your symptoms documented and they will observe you on the day. From here, the doctors can do further tests to investigate and you should start to have some answers. I am sorry for what you have gone through/ are going through. I hope that if the diagnosis comes through, you will be given the right kind of medication to help you.

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Dear Claire
I just saw your post whilst looking for info for my husband. I have never posted on here and probably wont again as my fingers are not good and it takes a very long time.
Ypur experience chimed with my own experience of 20 years of widespread symptoms. After a lifetime of high level fitnes, a healthy lifestyle and just getting on with it as much as possible my body seemed to sieze up and I couldn’t work by 52 yrs old.
Blood tests didn’t ‘prove’ the issues for years. But the correct tests have to be requested by the GP. Years later, an older locum GP jumped into action as she recognised my symptoms. She got specific blood tests done and agreed with my own diagnosis, which I also recognised from someone I had worked with. She referred me urgently for scans etc and to the various hospital departments which didn’t exactly spring into action. My advice: for about £300 you can see the top rheumatologist at the Royal Free, London. Your health is your wealth. I did this after the NHS rheumatologist suggested a wait and see approach before diagnosing, but she did order specific blood tests and thereafter prescribe immune suppression medication. I was diagnosed with multiple autoimmune diseases at the Royal Free, which from my own description the Prof believed had started in 1981! He told me to have appropriate blood tests done before seeing him ( I went again six months after that) and send results in advance of appointment, saying private blood tests are expensive and we are entitled to request these from GP, but they must be sufficient- the correct panel of autoantibodies-and that requires a GP who is interested in helping you. My fantastic older locum left and I’ve rarely seen a GP since- they are useless to me. For your appointment, write out a time line of your symptoms from the early years and edit that until reading it is easy and as brief as possible. Give that, or send that to the Prof in advance. Think about things like what makes your symptoms worse/better; how you react to cold/hot temperatures; is your dryness just your mouth or do you have it elsewhere e.g. gritty feeling in eyes; where exactly are the pains; do you have heartburn or stomach issues affected by certain foods/ alcohol; bowel issues. I don’t want to put words in your mouth as we’re all different. I have Sjogren’s, systemic sclerosis/scleroderma, erythromelalgia and others but diagnosed these 3 myself. My husband is a doctor and calls me The Professor. You are your own best advocate, I say.
Later in my diagnoses I went to Queen Square private neurology to have an assessment of my neurological symptoms and small fibre neuropathy was confirmed; related to autoimmune disease. The neurologist advised nerve conduction tests should have been done by NHS and asked for this. I’m still waiting years later for the basic tests associated with my diagnoses.
The private appointments were money well spent and I only wish I had done it years ago. My condition might not have progressed this far if I’d had medication. All of the consultants findings were sent in clinic letters to my GPs who don’t perform any better, but who now have very clear diagnoses and also treatment plans from UK eminent consultants. The GPs do have to be prompted. My NHS rheumatologist also has the same letters and whilst I still have to manage her, I can at least refer her to the treatments etc as indicated by the Prof( they know each other). I hope this helps and wish you well.

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Welcome Anne2 It is hard for the GPs to tell you that you have PD
because so many of the stystems could be something else. I was lucky in 2010 I went along to my GP as when I sat relaxing my right hand would shake. He sent me straight away to see the specialist. please read my reply to mother who has dreams or look up REM on our web site, Going back to GPs not many off tham have had any training in PD in fact I will go as far to say people with PD know more about it that GPs

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Hi Clair,
I have pretty much a similar experience to your situation.

When I was 36 I lost my hearing in my left ear in 3 hours. I was sent to the hospital and was told I had Vertigo. Then with time I had ringing in my ear. Every time it would last no longer than a minute. Then after the years I started feeling tired all the time. Then later I developed pain in my body. I had about 7 neurologist diagnosis me with fibromyalgia and about 4 with MS. I was put on every pain medication, and even the strong ones would not take away all the pain, but they would make me drowsy and I had my kids and I could not be like that. So I decided to with my pharmacist help go off all the pain medication. This made me worse physically, but mentally I was better functioning. Now the problem was I was very little mobility. I decided to have a spinal tap done to see if I had MS. It turned out I did not. I kept telling the Drs that I did not have fibromyalgia. That I knew many people who had it and the pain medications worked very well. But I knew inside it was not fibromyalgia for me. I was told like you, it was in my mind, oh my I was told enough, that I started to think I had something wrong mentally. Then after I started having very bad headaches. With the headaches I would be in bed for 1-3 days. I could not get out of bed to much, and I would eventually with some time develop episodes of having problems to speak for about a minute. I went to several neurologists where I lived at the time in a small town, and they did an MRI and said they found nothing and it was all in my head, that I was having migraines. I told the Drs that it was not migraines even though it looked like it. Then we went to visit my son who lived in a big city. I started to visit the neurologist Dr there and she said it might be seizures. So she ordered an EEG and the first two was hard to capture because we tried to get there as it was starting. The third time my husband got me there in the middle of the episodes and they found 3 seizures in my left temporal lobe. Now because it was about many years with no seizure treatment I suffered damage to my left temporal lobe. This is where i started to become my own advocate. The Dr did a neuropsychological test for epilepsy to see the extent of the damage. The results came back that I had damage but also I was not crazy or had this all in my head like I was told prior. So I decided from that point on I would trust test. Test do not lie and they do not guess. I also made it clear to all the Drs I would see after that I believed in test.
So now I have epilepsy, but what is causing it and why I have pain. Now the pain started getting worse and my mobility was not only slowing down by walking was harder, I would have times I would drag my foot, more on my right side. My right hand would curl up, and my writing is very difficult. Now tremor I have like you a very little tremor, but if I have caffeine it gets worse. I have problem swallowing now, because of the muscle in my neck . The Dr wants to do surgery in my brain because the seizures are not completely controlled. I said no I needed to focus on the cause. So now I know I do not have MS because of the spinal tap, I know I do not have fibromyalgia due to the medication for it did nothing for me, so I asked to see a Parkinson’s Dr. See not everyone fits in the box, meaning not everyone symptoms are typical of the disease. So when she first saw me she said I did have some similarities but she was not sure. I did the dat scan but it did not show too much. So I researched and found that there is a new test about 5 years old with 95% accuracy. This is a skin biopsy where they can see if a person has the markers for Parkinson’s, dementia, lewey bodies syndrome, and few other diseases. I had to go through a lot to do the test but I got it done and it showed I had the abnormal marker for Parkinson’s. So with this test I now been diagnosed with Parkinson’s, and put on medication at this time. At the same time I had a genitic dr run genitic test for seizures and Parkinson’s, which I do have the markers for both, but more interesting is the marker for the seizure. So you know, in the beginning I wrote I lost my hearing and no one knew why and I would have buzzing in my ear from time to time, which I always thought when the buzzing happened I was getting my hearing back. It turn out my gene for RELN came back as an issue. Now RELN can cause sudden loss of hearing due to seizure, and the ringing noise is actually a seizure happening. So through this genitic teat I just got my answer. Also seizures are frequent in Parkinson’s specially the headaches ones. See I always thought seizures were when your whole body shakes, well they are not. So long story short, you are not crazy, stay strong, and demand test. Remember not everyone fits in the box, so you can have the best Dr in the world, but if the Dr does not hear what you are saying is wrong, that is not your Dr. Also another test I find is if a medication works, then your on the right one. If it does not, then your on the wrong one. Medicine is the biggest test for me personally.

Look into https://cndlifesciences.com
Mayo clinic and some of the biggest hospitals use this new testing.

So YES fibromyalgia can be misdiagnosed for Parkinson’s, it happens a lot actually, and I am one of the misdiagnosed. Also you can test genetically for Parkinson’s and or be a carrier as well. Talk to a genitic Dr and they can explain. Today the scientists are still learning and finding out so many new information. I believe myself there is a cure and they will find it soon. Just stay positive, stay focused, and learn your body, learn what makes you feel well, what time of the day you feel better, and what makes you feel better. Massage helps me a lot, it is very painful to start, but with time it helps and. Stretching as well, it hurts but after it fells better. Learn to control the pain then it controlling you. You got to fight for yourself and do not worry about what people say or think, you trust your self and do your best for you. Example I get up and after 15min I need to lay down for 15 min, then I get back up and repeat. Around 4pm I know my body needs full rest, so I relax from that point on because I know that is what I need to do to help me. That’s it! I hope this helps you and maybe any other person reading this. Also I had a Dr once tell me if I had questions to go look on google, so this is what I do now, and you know google is not so bad it has a lot of information, but do your research. Take care!