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After 9 years, I still have no answers. Looking for advice.

Hello there. Thanks for reading.

I’m struggling to understand what could be going on with my body and was hoping for some advice.

I’m a 37 year old man and for the past 9 years I have had odd and worsening neurological symptoms. It started with tingling in the foot, which lasted a few weeks then went away for a year or so before returning. This pattern of appearing and disappearing symptoms has continued over the last 9 years but the intervals between symptoms is getting shorter, and the symptoms have worsened over the years. In addition, I am now never completely symptom-free with my foot tingling to some extent at the best of times. Meanwhile, during times when symptoms are strongest, which can last weeks, I have very uncomfortable vibrations through my whole upper body, fingers that spasm by themselves, a weird feeling of tightness in my head as well as hot/cold feelings, numb patches that come and go on my foot . I also have had the lhermitte’s sign ocassionally (say 30-odd times over last 2 years) when I twist my head in a particular direction. The symptoms are sufficiently strong that they sometimes wake me up, but not so strong to ever yet prevent me going to work. The time between these symptom peaks has reduced to around 3-4 months it would seem, whereas previously I’d go a year without symptoms and the deterioration has been most noticable in the last 2 years when a range of symptoms I’d not had before began.

So I was thinking that all this sounds a lot like RRMS. However, I have been to 3 different neurologists over the years and had myself checked out and nothing has ever been found.

Around 5 years ago I had a brain MRI scan on a 3T machine without contract, which showed no lesions shown at all.

More recently, a year ago I had a full brain and spine MRI both with and without contrast on a 1.5T machine. This showed no lesions at all.

4 months ago, I had a full brain and spinal MRI both with and without contrast on a 3T machine. Again - zero lesions, though there were dark patches that the radiologist referred to as artifacts. I have also had a lumbar puncture. This was normal. I have had all this in addition to all the blood tests for the range of possibilities: rhumatoid, thyroid, vitamin B12, type II diabetes etc. All of this was completely normal also.

The neurologist reassured me that whatever it is that I am experiencing is beneath the sensitivity of the currently available tests and that given that I have had these symptoms for 9 years and no lesions have shown, that it is unlikely to be anything to sinister. I find this hard to believe given that the symptoms have deteriorated and are now uncomfortable and worrying.

I was thinking that if this is RRMS, then I should get onto disease modifying drugs as soon as possible. However, I can’t do anything at all without a diagnosis.

Would anybody be able to give me any suggestions of what else I might do?

Thanks again for reading this and best wishes to you.

Tim

It definitely sounds like there is something going on but whether it is MS or something else, I couldn’t say. Do you still have a neuro or have you been discharged? If you have a neuro, can you wait until you are next due to see him? If not, ring his secretary and ask if you can have an appointment. If you have been discharged by your last neuro, speak to your GP.

There are conditions that have symptoms very similar to or overlapping those of MS: have your various neuros done tests to rule these out?

Good luck with getting some much-needed answers.