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Any help or advice please!!?

Good Morning, Just wondering if there is anyone who can offer any help or advice please. I have been following this forum for quite some time and everyone is so knowledgeable and supportive! My symptoms have been ongoing for a few years now, I have had intermittent pain in my left ear, I was told I had a perforated eardrum and this would repair itself however some years down the line these symptoms still persist. Then I was coming towards the end of my uni course and developed headaches and a painful/stiff neck. Was told by my Gp this was tension headaches/trapped nerve however this didnt go away either. I was eventually referred to Neurology who reluctantly done an MRI scan. The results of the MRI scan came back showing I had some unspecific white matter lesions (and something about T2 and hyperintensity) that were atypical of migraine and not usual for someone of my age. The Neurologist then organised an LP which was a very traumatic experience to say the least, however the results of this came back negative. My Neuro then decided I should have some nerve blocking injections for migraines. I am very reluctant to have this as the LP experience was so bad I dont want anyone coming near my head with a needle and also these lesions were atypical of migraine so I dont feel like this is going to help. I have since paid to see a private Neurologist who didnt conduct any other scans etc but diagnosed Occipital Neuralgia. The reason I am concerned regarding MS is that I have other symptoms that come and go including, pins and needles in both feet, all down my left leg (like a tingling) and my left hand/last 2 fingers. Extreme tiredness/fatigue no matter how much sleep I have or dont have, I feel exhausted. Pain in random places incl my lower back, left hip and leg. Sharp sudden pain on the left side of my head almost like someone has hit me with a hammer. I often feel like something is crawling across my scalp and upper back. Increased frequency of urinating and some difficulty with bowel movements. I find it very difficult to concentrate, some difficulty with word finding on occasions and my memory is slightly effected. I also have debilitating anxiety and depression which has been ongoing for some time. I have had some blood tests which showed a vit d deficiency and I am also Folate deficient, which I am taking supplements for now. I am sorry for the long post, I am just quite concerned and reaching a point now were I cant take anymore. I have asked my Neurologist to carry out a second MRI scan, maybe with contrast this time, to compare the results and see if any new lesions have appeared. He agreed to this but it never happened. I feel that once my Neurologist heard that I had anxiety, he literally puts every symptom down to anxiety. I dont think this is fair as my anxiety has certainly increased over recent times however, this is due mainly to my physical health. I have 2 gorgeous children and think as a mum it is natural to worry about these things as I dont only have myself to consider. Any help or advice is much appreciated, thank you in advance!!

Hello

Hmmm, quite a lot of different points here.

First, the LP was negative for Oligoclonal bands. That makes MS a bit less likely, although not impossible (about 80 to 95% of people with MS have O bands in their CSF).

Your initial MRI scan may have shown some oddities in your white matter etc, but the neurologist should have noticed if these were demyelinating lesions (and therefore indicative of MS). The fact that s/he didn’t seems to show that they weren’t demyelinating.

Then there’s your ongoing symptoms. Vitamin D deficiency can cause things like pins & needles and other sensory symptoms. So if you’ve only recently started to take vitamin D to counter the deficiency, then it may make things better over time. On the subject of vitamins though, have you had your B12 tested? That can cause symptoms that look quite MSey.

Then again, if the neurologist agree to refer you for another MRI, you could chase this up. Try writing to him, mention that he agreed to refer for MRI and ask whether he did indeed refer you as you’ve never received an appointment (better to put it that way rather than suggesting that he didn’t do what he said he would, or arguing about anxiety!). He should then refer you -after all, he did agree to it!

It is possible to have the symptoms you are experiencing, for it to have a neurological basis but not be MS. Have a look,for example, at https://www.fndhope.org/what-is-fnd/whatisfnd.html I’m not suggesting that FND is indeed what you have, just making a suggestion that you continue to see the neurologist and try to get some kind of diagnosis of whatever is causing your symptoms.

Your neurologist could be right in some respects to put many of your symptoms down to anxiety, it might seem like copping out of a ‘proper’ diagnosis, but it’s possible. But you need to keep seeing him in order to rule out other physical diagnoses.

I hope you do find an answer to your symptoms. It might help if you were to write them down in some kind of a timeline. Organising your symptoms in this way might help for when you next see the neurologist. If for example, you can pinpoint roughly when the pins and needles began, whether they’ve changed, diminished, or stayed the same. The same with your cognitive issues and your bowel and bladder problems (for which you could ask your GP for a referral to the local bowel and bladder service quite independently of the neurology department).

Best of luck. Let us know what happens.

Sue