LUPUS UK
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Nobody knows

Hi, I am new here and I Dont often reach out for any advice or even speculations but I thought I would give this a try because 14 years is a long time to hear "We Dont know what is causing this, let's watch and wait and maybe try this."

I am 32 years old and mother of 6 amazing kids. I have been struggling through some very odd symptoms that Dr's can't seem to explain. I will try to keep it as short as possible.

For as long as I can remember I suffered from ringing in my ears and daily headaches. After my 1st daughter was born I began having mini-strokes occasionally. The mini-strokes have continued over the years and hit at random times. Then 10 years ago I began to feel more tired and weak, I thought it was just due to having 4 small children and figured out how to deal with it. I suffered a massive seizure in 2008 and since the headaches have intensified. I do not know the cause for the seizure since the hospital was convinced I was using illegal drugs and didn't do a scan or anything other than trying to draw blood for a drug test. After the seizure my daily headache intensified as well as the fatigue and weakness. And a new symptom of whole body pain like I had just overexerted my muscles over and over again. For the next 9 years I have difficulty doing evenvthe most simple task due to difficulty thinking and getting my body to due what I want it to either from pain or my brain just failing to send the correct signals. In September 2017 my last daughter was born and after several trips to the emergency room being sent away with a wrong diagnosis they finally took my head/neck pain and chest pain seriously and did the proper scans with contrast they found that I was suffering from pericarditis, enlarged heart, fluid on my heart and lungs and while diagnosing my chest pain they did additional scans and found that I have aneurysms due to dissection of the artery in both my left and right vertebral arteries.

They got the pericarditis under control but did not know what to do about the aneurysms since we do not have a Neurologist locally. The advice of a university Neurologist in another state was to prescribe aspirin 81mg 2x daily and redo the scan in 3 months.

Since September the pain, fatigue and weakness is debilitating. My hands are now turning purple when they are below chest level and tingle all the time and my veins are very visible in my fingers and palms like my skin is translucent, the chest pain and shortness of breath is horrible, in confused and tripping over my words more often than not and the pain in the back of my neck and head is like my muscles are being torn away. When I go to the Er due to the pain I am told and treated for anxiety and my regular doctor put me on prednisone which made everything worse rather than better.

Sorry for the super long explanation which is the short version believe it or not. I guess I am just hoping that I am not the only person in this world that has so many symptoms but no explanation as to what is causing them. It has been a very frustrating journey and I cannot afford to give up searching with 6 little ones who need their mum.

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Welcome and may we have a good year to look forward to. I was the same don't really look for help. But this site is amazing. You will never feel alone, we all have weird and strange symptoms here lol. At the same time it will make you feel normal because at least someone on here will have the same feeling. When I found out I had lupus, it was the answer to all the problems I have been having for years. Was bad news but at the same time a relief. Happy new year xxx.

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Thank you so much for the reply. I haven't been diagnosed with lupus or anything really but it is one thing they are thinking it could be. My blood tests will be consistent with lupus or other autoimmune then the next time they do them they are normal so then they tell me they dont know what is going on even though the symptoms never go away. Its so frustrating because the Dr's start to think its all in my head then I struggle with myself wondering if it really is all in my head but can't seem to make myself feel better physically. Having somewhere to go and talk to others who have strange symptoms as well with definitely help me mentally.

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Totally understand, I was very lucky in away. I always thought I was just lazy or over doing things. Until I had my first real flare up (blood clots), I was diagnosed right away. I had/ have trouble having children even through ivf. Everyone is telling me lucky I don't have kids with y health like this. But sometimes I think ppls are lucky to have kids. They will get you through everything. Xxx

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Im so sorry to hear that. It is difficult to have kids and feeling horrible all the time. Luckily my older children help with their baby sisters without complaint. It can be depressing when you constantly have an inner battle when there is something important but you Dont have the energy to do it then you feel like you let them down. I just simply want to feel better and not have that internal self bashing session daily

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It sounds like you may have lupus and fibromyalgia causes all over pain and severe fatigue. Also brain fog. God bless you and give our doctors wisdom with their diagnoses.

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Thank you so much for the kind words

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Thanks

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You have had mini strokes: have you been tested for Hughes Syndrome

healthunlocked.com/hughes-s...

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I want to say no but quite honestly I have no idea. I've been to so many specialists and had so many tests done its hard for me to know for certain. The information is very much appreciated, thank you!

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It sounds daft, but worth getting one of the Drs you see next to review everything, and MAKE them do it.

Often they just look at ‘todays’ problem, every now and again you need to get them to stop, look back at everything.

Surely if you have had several positives for auto immune problems and then also some that don’t, The fact that you have had some positives should be put together to confirm you do have some auto immune problems? Particularly as immune problems are notoriously difficult to pin down.

Maybe you could try a small dose of an appropriate medication to see if it makes a significant difference.

But definitely get a doctor to look at ‘the big picture’

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Thank you so much for the reply. I actually have a journal that I have written everything down in past and present and take it with me to every appointment. Its just difficult to get them to consider that everything could possibly be related somehow until just recently. It is definitely a journey for sure.

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Yeah it’s annoying that they aren’t interested in our records...

Focus on getting them to review the Doctors notes infront of them, use your memory/notes, to point out the major events that should be documented, then highlight that this is only part of what has been going on...

Hopefully when they start reviewing properly that will be when they start asking questions, which will be when your notes will start to come in handy.

Be firm, insist you want to review it all with them, start with listing the big stuff and fingers crossed they start thinking. Doubt it will get you a diagnosis straight away, but it might be a starting point to you and the Dr having a better idea what might be going in

My Dr decided I had rheumatoid arthritis and sent me to the specialist who diagnosed Lupus. If the GP hadn’t decided it was rheumatoid arthritis I wouldn’t have got the Lupus diagnosis.

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That is very helpful advice. Perhaps I haven't been persistent enough to get them to stop long enough to listen to me. My Dr mentioned rheumatoid arthritis and another while I was in the hospital for heart issues mentioned lupus. I am just waiting for my appointment with a Rheumatologist and hopefully they will take the time to go over everything with me. This site has been a comfort to me in many ways. Not so I can diagnose myself but because for a long time I had just accepted that this was going to be my life and I was just doomed to have symptoms that nobody else understood. Thank you again for the reply and more understanding on how I can possibly help my Dr's understand

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xoxo

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Hi MrsMohawk,

Welcome to the LUPUS UK HelathUnlocked Community!

Headaches, extreme fatigue and muscle/joints aches and pains are all common symptoms associated with lupus. To find out what other symptoms are associated with lupus as well as how lupus is diagnosed, you can download or request our free information pack here: lupusuk.org.uk/request-info...

Although you have not been diagnosed with lupus, 90% to 95% of people with lupus will experience muscle and/or joint pain. We published an article on our blog about pain management which contains helpful tips and information which I hope you will find useful: lupusuk.org.uk/pain-managem...

Fatigue affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which you can read here: lupusuk.org.uk/managing-fat...

Difficulty in articulating thoughts and memory impairment are common symptoms that are associated with lupus; it is referred to as ‘brain fog’ or ‘lupus fog’ by people with lupus. Stress, anxiety and fatigue are a few examples of the causes of brain fog, you can find out more about this in our blog article ‘Coping with Brain Fog’: lupusuk.org.uk/coping-with-...

To read our factsheet on ‘LUPUS: The Heart and Lungs’ click here: lupusuk.org.uk/wp-content/u...

Using a journal to make notes before attending your appointments is a great idea! If you are not satisfied with your doctor’s performance, you can request a referral for a second opinion. To find out how you can do this, click here: lupusuk.org.uk/getting-the-...

Please keep us updated, wishing you all the best.

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Thank you so much for all of the helpful information!

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Hi, sorry to hear of your struggles to get diagnosed, with a complex history it is hard to get the main points across I found. What worked for me is finding an outline picture, a line drawing of a human body and I listed the symptoms in a 'bubble' next to each body part. eg head: hair loss, brain fog, distorted vision, problems swallowing, dizziness etc. This was very helpful in getting the rheumatologist to take me seriously and finally getting a diagnosis. Which is a start! Good luck and best wishes to you

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That is a very good idea. Thank you so much for the advice. Maybe since I have to wait a while to even get in to see a rheumatologists I will make a point to do that beforehand.

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