Undiagnosed and desperate for answers

Hi everyone, I don’t have a diagnosis for my symptoms, but I would appreciate any advice or support. I am 28 years old and since late 2018 I have been experiencing a bunch of different symptoms at different times. Originally, doctors blamed my thyroid, as I was found to have mild hypothyroidism, but after treatment the symptoms remained. I had one brain MRI done at the beginning of 2019 and repeated the scan earlier this year. Both showed the same single “spot” of unknown origin. I am waiting now for a neurologist, which takes months, especially since I live in a foreign non-English-speaking country and I am only at an intermediate level in the local language.

Unfortunately, I also suffer from anxiety, depression and OCD. Mental illnesses can cause physical symptoms that can mimic many other illnesses and disorders, and so can the medications that treat them. I am not convinced, however, that all of my symptoms can be explained by my disorders and meds. I was an athlete (ice skater) my whole life and I am devastated that my symptoms interfere in exercise, especially since I have gained weight as a result. Skating is a struggle for me now and it means so much to me.

I’ve experienced:

  • general weakness/fatigue
  • slowed thinking/brain fog
  • migraines, including temporary vision loss
  • balance problems, including feeling dizzy on stairs
  • muscle and joint pain unrelated to exercise
  • increased pain when I bump an arm or leg, almost like a “funny bone” feeling
  • random muscle jerks in legs and torso
  • pressure around chest at random times, seemingly unrelated to anxiety
  • pins and needles, starting in right leg
  • arms and legs falling asleep very easily
  • puffy feet and legs, but not ankles

Any help would be much appreciated.

Hi Megan, I`m so sorry to hear how all these problems have affected the love of your life ie skating…that must be devastating for you.

As you say, sometimes anxiety etc can bring on physical ill health. This does it make it difficult for doctors to differentiate between symptoms.

All the ones you list could be MS, but they could also be so many other things too.

I think all I can advise is for you to keep a diary of events health wise…but to try to find another way of busying your mind…and please dont visit Dr Google…I know it`s tempting, but he can play havoc with our thinking.

Maybe you could work with a personal trainer and concentrate on improving your fitness and skating ability.

Best wishes, Boudica xx

Hi Boudica, I try not to Google, but when the doctors ordered both brain scans, the forms said “to rule out MS” and then they said they couldn’t confirm or deny anything because there is only one spot. So my anxiety only grew after that!

The diary of events is a good idea! I’ve been writing down symptoms as I experience them, but I should really be marking down the dates too. Thank you :slight_smile:

I have hypothyroidism Megan and have had it for many years. I found that even when I had reached the right dose of thyroxine that I was not symptom free and that really remains the case. Once you have that illness you will always have some symptoms. The weakness and fatigue, the brain fog etc. Also from my own recent MRI x 2 I have been advised that the group of lesions on my brain now for the past 5 months could be attributable to migraine (but I do not experience them). I see you do have these headaches? I also experience mental health problems and of course these episodes in themselves can be linked to MS. I think it may be early days for you as you will need to meet the conditions of the McDonald Criteria, not that any of us would wish that for you. I am sure you recognise the importance of trying to get some relaxation and enjoyment into each day and to be taking all round care of yourself as best you can. As I review your list of symptoms I can say in all honesty that I see them probably more in keeping with the hypothyroid diagnosis than MS. Can I put it to you that MS often presents in such a way as to prevent a person from performing a certain action, but this does not appear to be your story. Neither is there a tale of numbness in a limb or electric shock type pain going through your body or loss of sight (other than that linked to migraine). So I would be quietly hopeful maybe for you but nobody on here is a Doctor and hopefully you will be seen by a Neurologist sooner rather than later. Good luck, and do let us know how you get on.

Hi :slight_smile: Oh, that’s interesting, I hadn’t heard that symptoms can continue even when hypothyroidism is treated. I only starting thinking of MS because it was mentioned by my doctor before each MRI, but I wasn’t given much additional information. Thank you for the advice :slight_smile: