Foggy's "Invisible Illness" Support
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I'm a 37 yr old and was an active woman. I have been suffering with tiredness/exhaustion on and off for the last 6-10mths. Also had numbness in my left side of my body. Plus my muscles ache. Was rushed to hospital had mri and lumber puncture. Mari showed 2 leasions which the hospital called non specific. Now my right side is effectively the same as my left. I also have pins and needles. Went to see my gp who when I asked about m.e said we cannot rule out CFS. The slightest thing cause me to be drained.

So I don't know where to go now as what does a statement like that mean 'cannot rule it out'

Sorry for the vageness. Don't know which way to turn 😢😢😢😢

2 Replies

If your doctor hasn't referred you to an ME specialist you could ask them to.

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I am so sorry they left you with any questions about your condition. It makes things worse for the patient when we walk out with our ears ringing and no answers!! No specific I found was they wont pin point a diagnose. 2 lesions are pretty normal for people, they are places on the brain that are a darker spot that could had been caused by a number of reasons. Dont panic! :) Go to your dr and ask to be referred to a Neurologist if you havent been already. They will be able to explain properly what is going on. ask for another MRI in 6 months to see if there are any more. It can rule in or out MS. ME is a difficult one to diagnose, they always make people wait so long before getting the right medication. Good luck in finding out answers. Best thing to do is be a pain in their side ask questions about everything. Start a journal, write down what makes things worse. Food, exercise, rest times, what you drink, ect ect... Keep records of numb patches where when and how long in that one spot. I did this and also kept a pain record. Where when and how long. What medication you took and what helped or didnt and also the effect it had on your daily life. Its sad we have to do this but I promise you will love yourself for doing it. Pass them your diary to read at their leisure, give them a self addressed envelope and ask it be posted back to you. I used an A5 paper book with lines its easy to keep track of and you can portion it off. Start at the front with your everyday stuff like numb patches, foods, exercise ect ect, turn it upside down and start from the back your pain chart. They will love you being so organised! Good luck with your journey, you will get there and figure out things as you go along. Take care and try to be as strong as you can be sweetie and remember you can always find someone here because we are all in the same boat with one thing or another!

Oh by the way I have Peripheral Neuropathy that was handed down to me from my mothers side of the family. It is a nightmare! Oh and they are still looking at my lesions trying to decide if I have MS that was 2 years ago. Its only a name and my treatment and medication for this PN is the same as if they had diagnosed me with MS. xx


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