Hello. Over the past year I’ve been battling some symptoms which have me a bit worried and numerous long waits and tests have been inconclusive. I’m sure a lot of people here have looked up symptoms and Dr Google has diagnosed MS! I’m trying not to dwell on it but I’m at a point now where I’m not sure what to do.
At the beginning of 2022, I began to have a strange tingling feeling in both legs and right arm. Sometimes it feels like a burning feeling, others like I’m about to get a dead leg but never actually do. This is accompanied by aching muscular pain all over my body and a general wooziness/dizziness where some days I would feel quite overwhelmed and need to lie down. The muscle pains are all over, although more noticeable in the upper back and in my calves. Some days my legs would feel like jelly, although there is no loss of strength.
After speaking with a neurologist, they concluded that their physical examination was normal. I completed some blood tests, an EMG of my arm and had an MRI of my C-spine. The EMG and bloods were normal and the MRI showed some wear and tear of the neck which the neurologist claims is causing my problems. He has since discharged me and told me to do some posture related exercises and review my ergonomics, saying that he could find no serious issues in the tests.
However, since then the symptoms appear to be worsening. The tingling feeling now happens in my torso too and my legs tingle and twitch more frequently.
I’m waiting on another MRI of the rest of my spine after speaking to a rheumatologist. I’m wondering however, if it would be worth getting a second opinion from a different neurologist.
I am thankful that they haven’t found anything serious but can’t help but feel maybe something is being missed.
The symptoms aren’t going away and no matter what I try, seem to be worsening and I don’t want to sit back and do nothing as things deteriorate. Have any others experienced something similar/have advice on a good next step? It can be a bit disheartening as I’m sure a lot of you can relate, especially given the waiting times for these appointments!
The new MRI will give more information. Whether it shows something new or it doesn’t, it’s all intel and therefore useful for guiding next steps, and in your shoes I would be inclined to keep my powder dry until those results were in. Then you can review where you are and make an informed decision on what to do next (even if the medics have not come up with a plan of their own by then, which they might).
Did you have Covid before the symptoms started? Certainly a lot of neurological symptoms associated with it in I think 30-60% of people who have had Covid.
Thank you. Thought I would give an update in case anyone can help, or if this resonates with or helps someone else. I didn’t have covid before the symptoms started. The rheumatologist doesn’t seem to think it is fibromyalgia but I plan to discuss this at the next appointment.
My biggest concern remains a feeling of unsteadiness/lightheaded/wooziness as if I’m going to pass out (but never actually do). This seems to happen at random, quite suddenly no matter what I’m doing at the time. It almost feels as if it’s coming from my upper body/torso which is tight and covered in tender spots (particularly along the chest wall and under the armpit). It comes over me in waves, makes my legs tingle and sometimes is accompanied by nausea. The feeling can last from a few minutes to hours. Some days I just feel worn out and never quite 100%. I don’t think it’s anxiety, though that probably isn’t helping and it does make me worried about going too far from home.
This is alongside a tingling/buzzing/numbness sensation which happens all over, although more frequently in the legs where it feels like there’s a phone gently vibrating underneath the skin. And some days my calves will be twitching, tender and painful to move for no reason. Some new symptoms include an on/off gnawing stomach ache every couple of weeks and slight blur in the left eye.
Again, more tests (lumbar MRI, blood tests and ECG) have been inconclusive and I won’t see the rheumatologist for a follow up for another few months. Physiotherapy to date hasn’t really helped with the muscle pains. Meanwhile, my symptoms seem to be worsening and I’m no closer to understanding what this is.
I’m considering whether to pay for a private consultation with a neurologist who specialises in MS or pay for a scan (I’m in London). Problem is, I’m not sure what would be most beneficial - a brain MRI to (hopefully) rule out MS, or some kind of ultrasound of my upper body/thoracic spine in case its a musculoskeletal issue.