Forum

New to site and undiagnosed

Hi all, I joined this site a few days ago and my memory is so bad at the moment that I can’t even remember if I posted on here or not. Long story short… (Really.?) I have been experiencing symptoms for years. The first I believe was when I was a teenager. I played badminton at a high level but gave up because I could not longer serve. Every time, my wrist did its own thing and the shuttle went all over the shop. I didn’t see a doc back then as everyone I spoke to said it was psychological. In the last 10 years I have been diagnosed with IBS, Gilbert’s disease to name a few and the symptoms come and go but I was given no indication that it could be fixed but the feeling that that is what it is and I just have to live with it. I had shingles when I was about twenty one and the nurse at university had to call my parents to pick me up because I could not walk. It was in her words the worst reaction she had ever seen. This lasted a week or so and since then my body has never fully recovered. During pregnancy with my first son, blood tests showed that I had a severe hormone imbalance and I had to have an amino. All good apart from I started to develop what was diagnosed as restless legs. I would wake in the night with a bolt of electricity and subsequently feel crawling under my skin in isolated areas. None of the above symptoms have ever gone away permanently. During my second pregnancy, I developed severe hives mainly hands and legs which went away soon after the baby was born but again, they come back intermittently along with everything else. More recently, whilst having … I became completely numb and had no feeling internally or externally around my pelvic area and thighs. This lasted a while and went to be followed by the same symptoms a few months later. Three years ago, I went to the doc complaining of dizziness, slurred speech, vision problems and a strobing across the back of my head. He told me to get my eyes tested and indeed I needed glasses but was told it was for muscle degeneration rather than my vision which would have been corrected by buying a cheap pair of reading glasses from the chemist. On each subsequent eye test I needed different lenses and in December I told the optician I thought it excessive to need so many. Only en did he do a peripheral test and referred me to an eye specialist. He also tested for diabetes negative and thyroid positive hypothyroidism for which I have taken medication for six months. I have been tested and have an eye condition blepharitis but was told this wouldn’t cause dizziness etc. I have had an OCT scan normal and am booked in for another in October. Whilst at oct I saw a note on medical records MS. At work last week I became really down because of my symptoms and called the doc for an appointment. I was unable to function at my job for wanting to sleep and being unable to see. To my amazement, there was a new doc. He said he wanted to start from scratch so I am all the way back to waiting on blood tests for thyroid and diabetes. I am at wits end. If you are at the bottom of this, thanks for taking the time to read. Do you think I should demand an MRI?

Hi sounds like you have had a hard time of things, I can sympathise. It’s good that you have a new GP taking over your care, a fresh perspective is probably just what you need. It might be worth mentioning to the GP whether its a possibility your symptoms are neurological, but I would avoid asking directly about ms. I find doctors don’t respond well to patients doing there own research! If they think its a possibility or even worth ruling it out, then a referral to a neurologist could be discussed and a possible MRI. Good luck i hope you get some answers soon. Laura :slight_smile:

Hi and welcome.

First of all, if MS is suspected then an MRI is usually done instead of a CT scan. MRIs would be more accurate at picking up MS lesions than a CT scan.

Given your list of symptoms (maybe except for the hives) something neurological could be going on. Equally it could be vitamin defiencies or hormone imbalances. Your GP obviously wants to rule out everything he can test for from his end. If all his tests fail to suggest something he then will refer you to a neuro who would then give you an MRI.

Another thought, ask your GP to test your reflexes. If they are brisk then that usually indicates that there is something not right with your spinal cord. My neuro said to me that GPs never seem to check reflexes. As soon as the neuro saw my reflexes he immediately said “spinal cord issues” and ordered me an MRI.

Moyna x