Waiting for diagnosis

[HannahCB92]

Hi,

It's been 12 months and i am still waiting for a diagnosis for my tiredness.

It started in August 2022 and i had extreme tiredness. My Doctor prescribed folic acid as my folate level was low. I did that for 4 months and then had bloods again. My vitamin D was low so i did another 4 month course. My bloods then came back normal again.

During this time my symptoms got worse. I was constantly tired and no amount of sleep ever made me feel rested. I had a constant headache, my joints were painful and i kept losing my concentration.

I had to change Doctors because they stopped trying to help me get some sort of diagnosis. About 2 weeks ago i had a full profile for bloods at my new Doctors. They checked for vitamin deficiencies, cancers, thyroid, liver, kidneys, celiac, chrone's disease. I literally had everything and all my tests came back normal which has been so frustrating.

I am booked in for an MRI and also bloods again on 20th September and a GP appointment on 27th September. I haven't been able to work because i've been falling asleep at my desk and have been losing my concentration and forgetting things. The tiredness and the constant headache are the worst. Sometimes i have dizzy spells and feel so sick when i have a really bad day.

At this point i'm in a constant state of exhaustion and no one can tell me why. One of my old friends suffers from ME and mentioned it to me as a possible diagnosis. I will mention this when i go to my GP next month but has anyone else had this issue? I feel like i'm going round in circles for the past year.

How do i mention this to my GP? Is it something i have to get referred for?

Any advice would be super helpful.

Many thanks,

[strongmouse]

Hi Hannah,

it can be hard getting a diagnosis for such conditions. The ME Association has free literature on ME.

meassociation.org.uk/produc...

scroll down there is a leaflet on getting a diagnosis. If you read about ME and you think that might be you take a copy of the leaflet to your GP (or send it with a note). They also have a Helpline and you could phone and talk to them about the best way of going forward.

Also Action for ME has a general list of symptoms - ps://actionforme.org.uk/get-info...

I developed ME after getting a viral infection and it can be difficult to get a diagnosis. There is no one test, and it is important to rule out other illnesses.

Have you been investigated for sleep problems if you are falling asleep at your desk?

Although it isn't nice having a long term illness it does help when you know what's wrong, as you can manage it better! It sounds as though your GP is being very thorough. Hope you get some answers soon. x

[stravinsky1]

I'm so sorry to hear this Hannah. You sound as if you now had a good GP so ask to be referred to a CFS/ME specialist for a diagnosis. Of course it may not be ME, maybe fibromyalgia or some thing else? I don't know much about the fibromyalgia tbh.Make sure you rest but when able do short periods of activity. By that I don't mean gym or running etc. Getting up to make a cuppa, reading, having a shower etc are all activity.

start a diary A for activity and R for rest, W for when you wake and time when you get to sleep all with the time if day or night and so on. That way when you get your appointment they will have a base to work from.

I know it's really difficult going through this but hang in there and please let us know how you get on. All the best.

[stravinsky1 in reply to stravinsky1]

Sorry I forgot, have you seen a Neurologist as headaches maybe migraine or another type if headache.

[boradorable]

Hi Hannah,

I'm afraid I've nothing useful to add here but wanted to stop by to send some love , let you know you're not alone and share in your frustrations (it sounds like things have been rough).

I'm also awaiting formal confirmation of a diagnosis after goodness knows how many appointments, referrals, blood tests and MRIs - there was some progress in recent months that I've had confirmation I'm on the wait list for a M.E. specialist clinic but no appointment has come through since so I'm still in limbo, struggling and waiting.

I know things are stressed with NHS resources but I'm a little over 2 years since things became problematic and I sought out a GP to try and get to the bottom of things which makes it tricky to remain optimistic or positive in the meantime. This may be an anomaly as following previous neurosurgery and ataxia there were theories it was developments in that initially but it seems likely the M.E. is impacting existing ataxia symptoms as well as bringing their own additions to the party! 🫠

As someone has already signposted the ME association site has a vast array of information that may be helpful.

To perhaps oversimplify things on the fibro/M.E. front fibro is more focussed pain in certain points (often used to diagnose) and M.E. is more achy sensations that can be painful - if that makes sense?

Personally I found the book 'How to be sick' by Toni Bernhard really helpful in shifting my mindset to try and manage things in the meantime. I've also heard good things about the book 'Fighting Fatigue' by Sue Pemberton which is on my to-read pile (I haven't got there yet!) as it has input from specialist clinic practitioners, patients and tries to provide practical advice for managing symptoms that can be so debilitating like fatigue.

I hope you make progress with your diagnosis journey and it doesn't make things more difficult for you by being unnecessarily drawn out further. x

[StripySpoonie]

I'm having a brainfog day so only skim-read the replies, so I apologise if I'm repeating what others have said. Unfortunately, as you'll have found out there isn't a 'test' for ME but rather the process of eliminating everything they can test for.

A couple of things that did occur to me though were that those levels often drop when you've been fighting an ongoing infection, or your body has got stuck in the loop of trying to, so I wondered if you remembered any infection like covid or a nasty cold in the time shortly before the tiredness started?

I have had ME since getting Glandular Fever back in 2007 after getting really run down. Fatigue is something I know and the pain of ME. I was later found to also have Hypermobility Spectrum Disorder that had gone undiagnosed in 2019. The reason I say this is I thought I knew unrefreshing sleep but when I caught COVID in March 2020 something changed, and the sleep and fatigue that was normal for me just altered. After three years I managed to get a referral to the Sleep Disorder Centre at the hospital. I did a home test and they found nothing but persevered and did the sleep over there and they found I was having disruptions to my breathing in sleep. It wasn't the serious levels some get but it was enough that it was leaving me in a state where I'd barely dared to drive. It's just a thought that might be worth considering as it's one of many of the lingering symptoms I've had of COVID despite already having ME and certainly something no one ever thought to check before. I now sleep with a CPAP and I can safely say I had forgotten what sleep had felt like before covid.

[VellBlue]

Apart from ME, this could also be B12 deficiency. I have the same symptoms you describe if I don't have enough B12.

B12 deficiency can happen because of failure to absorb it from the gut into the blood, or failure to transport it from the blood into cells where it is needed. In the second case your B12 levels may look normal on a blood test, but you are still experiencing the symptoms of deficiency. It's important that they test for homocysteine and methylmalonic acid, which will be raised if you are not getting enough B12. Methylmalonic acid destroys the sheaf of the nerve cells, which could be a cause of the constant headache. If it is B12 deficiency, it's important to resolve it as soon as possible so there is not permanent nerve damage.

You may want to join the Pernicious Anemia Society forum on here and describe your symptoms there, to see whether others also feel it could be B12 deficiency. They will also be able to tell you what may work best for you in terms of next steps.

I take frequent B12 injections which has completely resolved the symptoms you describe.

Please take care.

[peege]

In response to tge reply above my elderly neighbour was falling asleep all the time, she put it down to old age but went to her gp anyway, her B12 test came back very very low, she had injections of it and is back to her energetic busy self.Myself, I went to the gp with constant fatigue in 2016, had all the blood tests, gp told me they were all fine and diagnosed CFS (Chronic Fatigue Syndrome ), he said "there's no cure, you have to manage it". That was it

Definitely go for the MRI scan though, it should pick up anything else that's occurring

[MEguy in reply to peege]

They don't do MRI scans for pwME. Not from my experience they don't. I have never had an MRI scan for my ME.

[peege in reply to MEguy]

Nor me - The poster HannahBC92 mentioned s/he was booked for an MRI hence my writing 'Definitely go for the MRI scan though, it should pick up anything ELSE that's occurring'

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