Neuro symptoms - any thoughts?

Brain and nerves
1

Hello Everyone,

Sorry, first ever post on a board and a bit lengthy to explain what’s going on!

Always been well and used to run. I am now 44. Only odd health issues was a bout of double vision and bad headaches when I was 25 which passed after a few months.

Nearly two years ago I had emergency surgery on my spine for a very large herniated disc which cause complete paralysis / foot drop in left foot and pins and needles in saddle area. I was lucky and made a complete recovery.

For the past 15 months, starting 7 months after my spine surgery I now have the following which has progressively developed.

Balance problems, worse with eyes closed, not there when I lie down. Comes in waves of severity. Feel like I’m on a rocking boat.

Muscle twitching in all muscles, worse in legs and more noticeably when relaxed. Even had twitching eyelid, under eye, cheek and nostril all on right side of face.

Left side of body gets very tingly with an awkward weakness about it. This comes and goes throughout the day, noticeable in arm and leg.

Muscles become fatigued very easily, problems climbing stairs, washing hair etc. I don’t think any true weakness just muscles get tired very quickly and will shake if I hold them in the same position. Again I have good and bad days with this but it is always there to some degree.

Sometimes I get foggy vision and eyes can flick very fast left to right when reading, though it is fleeting. Had double vision, twice in one day about 6 months ago but not again since.

Pins and needles in saddle, left hand, legs and feet, face and scalp, always in patches, intermittent, lasting seconds to waves that last around 20 minutes.

Right eyebrow (not eyelid) droops / feels like the muscle pulls it inwards. Compensate for this by keeping surprised look.

4 months ago developed uncontrollable spasm in throat, tongue and soft palate. They still twitch and I control them by holding them slightly taught. If I relax the muscle they continually contract then relax (spasm). Slowing is mildly affect and voice has become a bit hoarse but I feel like this has all levelled of in the past 2 months, so not better but not getting worse.

Fizzing, popping and tingling sensation in back of head at night when I lie down. Comes and goes with an increased heart rate and a wave of heaviness that passes through my body from head to my toes. Almost like a current passing through me.

Left hand thumb and forefinger sometimes visibly twitch.

Left forearm has a loss of sensation along with saddle area and left little toe.

Stiff feet after prolonged sitting / sleeping and mild cramps in left calf muscle.

Fullness in ears with bursts of tinnitus that comes and goes, several times a day.

Generally speaking I have more symptoms on right side of head / face and left side of body, though muscle fatigue is everywhere.

Bladder frequency and urgency. I go about 15 times a day and get up every night (sorry TMI).

 

GP sent me to A&E when I got the throat spasm. Saw a very abrupt neurologist who suggested I had anxiety. I have never had anxiety or depression, it’s not my nature. Even now I am not panicking about what is happening to me, though I am frustrated with it affecting mine and my family’s life (I have a 10 year old daughter). They did a full brain and spine MRI and NCT / EMG tests two weeks later. I have not seen the consultant since (it’s now 4 months later). The letter I received said EMG normal, although my left leg tests were definitely different to the right as the Dr. doing the EMG kept pointing to things on the screen to the trainee Dr. In the room, but without saying anything. Also my left big toe did not respond like the right to the NCT, which may be due to never damage from my spine problem but struck me as not normal. With the EMG they put the needle in a muscle in my neck and the static sound never stopped for a long period as it was not possible for me to relax the muscle in my neck and still isn’t. For the MRI it said ‘no significant abnormalities that would explain symptoms.’ I have had full blood tests that are normal.

Having heard nothing from the hospital 4 months after tests, I have written to the consultant to ask for follow up. I am doing everything I can to help myself by keeping as active as I can, I walk everywhere (with difficulty some days). I am taking multi-vitamin and nerve/muscle function supplements and I have tried cranial manipulation to release the muscles in my neck, though nothing has changed. I continue to work and do what I can whilst managing my energy levels.

Although I have bulbar symptoms I don’t think I have MND/ALS, as I don’t have fine motor weakness and whilst swallowing is a bit awkward and my voice gets a bit croaky when I talk a lot this is not something that is severe. Also, my symptoms fluctuate with severity so not sure that can be classed as progressive, although overall I have more going on now than I did a year ago. I also have an apparently clear EMG, albeit early on after bulbar symptoms, so that suggests not MND, I think??

Clear blood and MRI and EMG suggests not MS or vitamin deficiency and my symptoms don’t quite fit with MG. I’ve never had a tick bite I’m aware of so doubt it’s Lyme disease.

I’m not asking anyone on here for a diagnoses but if anyone knows of anything that I have not considered that may be helpful. Equally, when I do get to see the neurologist again, are there any specific questions or tests I should be thinking about to rule stuff in or out?

Thanks in advance.

Blank P.

2

WOW, I'm at a loss for words, especially after reading that you've already had a full MRI brain scan. Question, when you talked about your bladder issues, getting up approximately fifteen (15) times at night. Have you found yourself extremely thirsty, drinking liquids constantly to quench your thirst? Are you diabetic? If not, have your doctor check you for Type 2 Diabetes, that's number one (1). Let's discuss your Neuro Symptoms, which for me, I've listed as follows:

1) Balance issues

2) Foggy vision

3) Eyes can flicker very fast

4) Double vision

5) Right eyebrow dropped

6) Uncontrollable spasm in throat, tongue & soft

palate

7) Fizzing, popping & tingling sensation in back of

your head at night when you lay down

8) Left thumb & forefinger twitch

9) More symptoms on right side of head

To let you know, I'm not a doctor. I'm 63 years old and I too have experienced my share of neurological symptoms over the last three (3) years, which progressivelybecame worse over time. It startedout with balance issues along with falling down and dropping things. I just chalked it off to me getting older. I had other health issues like over the last twenty (20) years I've had a couple heart attacks, stent implant surgery, I have Peripheral Neuropathy in both my feet and hands, I have Type 2 Diabetes, that's why I asked you if you had a thirst issues because that's what happened to me. I noticed I was getting up like every hour during the night to go to the restroom + I was thirsty, and it just seemed it didn't matter how water I drank, i could not quench my thirst. I told my doctor about it, he had the nurse check my sugar/blood, it was like 380, that was it. Anyway, it seemed like around May/June 2016 not only did my symptoms in severity but I started experiencing additional symptoms like Dizziness, vision issues, memory issues, headaches etc. So I finally told my doctor in September 2016, he ordered an MRI brain scan and they found out I had multiple Lacunar strokeson my right side of my brain. But it didn't end there. I've had brain damage due to the strokes, I stutter when I speak, I have seizures and I deal with dizziness, balance issues and headachesevery day, 24/7. I live in America and I believe you live in the UK or close by. My suggestion to you is to see another Neurologist. You need someone to give you a correct diagnosis and get you on a physical therapy program like right now. You need to speak up for yourself because you will be your biggest advocate. The longer you wait the worse off you will get.

3

Thanks for your reply Jon,

Firstly I should say I was not very clear, I go to the bathroom about 15 times a day (8 is normal) and about twice in the night. My blood test checked for diabetes and that was fine. Should have also said I am female, not that it makes any difference.

I am in the U.K. and our NHS is amazing, I received excellent treatment for my back. Unfortunately where I live neurology services are under huge pressure. I have chased and will give it another week as they now have a very detailed history from me in my letter I sent, which they didn't have when I was sent to A&E, that was all a bit rushed. It's just not easy here to get a different neurologist. You have to be referred by your GP and whilst he is very supportive there are procedures to follow in the NHS. I may be able to seek a second opinion if the neurologist I have written to does not suggest next steps.

At 44 I feel a bit young to all these things down to my age! Hope you find ways to manage your health and thanks for your thoughts.

Blank P.

4

Does anyone know the difference between contrast MRI and normal? Wonder if contrast would show anything different up?

Thanks.

5

My husband had a 16 week appointment given for a Neurologist in UK - went private and got it within 3 weeks 

6

Hi Janet,

Did he have private medical cover or did he just pay for the appointment and were tests ordered and did he have to pay for those privately. I asked GP about private appointment and he said the problem is if you need to go to London for an special scan it would cost A LOT of money and supposedly once you have gone private you should stay private?

Thanks.

7

Hi Blank,  We paid privately for the initial consultation and then asked to go back on to the NHS . He had an EMG 2 weeks later.  I would suggest going on your local hospital website , looking at Neurologists, phoning the Secretary and asking if that person does private and would you be able to go back to NHS afterwards

8

If you have a contrast MRI, it just means that you are injected with a contrast dye beforehand. This makes certain tissues and blood vessels show up more clearly and in greater detail. 

9

I am a MRI tech, maybe this will help.

First non-contrast scans are performed then a gadolinium contrast agent is injected into a vein. 

Then additional scans are performed.

Very rarely something shows up after the contrast injection that was not seen before. Small metastasis or meningitis would be two examples.

It is a more thorough exam but may not always be necessary, depending on the diagnosis. 

10

Hi Joe,

Thanks for your reply that is helpful. I'm still having a lot of issues. Mostly muscle twitches and muscle fatigue. Soft palate, tongue, larynx and right eyebrow are the worst. I get very stiff feeling especially in a morning my feet feel stiff and painful. Pins and needles in head, left hand, and saddle and my urine is nearly always cloudy with visible particles in it and mucous at times.

My only slight concern is if something was missed on my MRI. It happened two years ago when I had a huge L4/L5 disc herniate, that was partial cauda equina syndrome and I had complete foot drop. In Initially I was told I had a trapped nerve by my sacral iliac joint, then spine consultant looked at scan when I phoned up due to severe pain and he spotted it straight away, and I had surgery the next day. Honestly, a monkey could have spotted it so, I saw it immediately when the consultant showed me and I have no training! He was pretty livid it was missed by whoever read it the first time.

I saw the neuro consultant last week and I'm having an EEG next Friday and should be having blood and spinal fluid analysis as well. Fingers crossed they will give some clues. So bored of it all now, and would just like to know what it is. I crack on with things and haven't taken time off work. I've had to make some lifestyle changes to manage my energy so I've found a new normal but I'd love to get back to riding a bike and running.

Thanks again Joe.

Blank.