Going around in circles trying to find an understanding Doctor

Hello I am glad I found you. My body has been shutting down over the past few years and despite an MRI during covid lockdown and being very quickly poked by a Doctor who seemed to be terrified to be in the same room as me I am still at a loss.

Last week I had an appointment with my new GP who seems really interested in my problem and has asked me to list some of my symptoms so I can discuss them with another doctor.

I would really appreciate it if anyone could spare a few mins to look over what I have written to him to see if my symptoms are similar.

Here is what I wrote:

Thank you for seeing me last Friday where we discussed the strange symptoms that have been getting worse over the past few years. I just wanted to list all of the symptoms that I have in the hope that an answer can be found to what is causing them.

1: Loss of sensation in both of my feet: My 4th and 5th toes on both feet are numb to the extent that I could probably remove my toenails without feeling any pain. I can feel pressure when touched on the toes and feet but I cannot feel any pain this has progressively worsend over the past 4 years

2: Knees Buckling without pain: At least 6 times per day my left knee will buckle without warning and without pain this can cause me to fall but usually I can catch myself and recover before I hit the ground. This buckling can either be quick and short/sharp and will recover itself or long where the knee does not regain composure and I would fall to the ground.

in the past week I have fallen 3 times. I made a reference to you during our appointment that I feel that my brain does not know where my foot is in reference to the floor and it is as if my brain forgets that I am standing or walking.

3: Pain in arms, Legs, lower back, Neck and lower abdomen: I often feel as though my muscles have frozen especially in my lower back. I noticed it has become worse as any task where I have to bend over even for a short time will result in me becoming stuck. This stuck sensation also covers the whole circumferance of my lower torso. I can only describe it as being bent over whilst on the receiving end of a Heimlich maneuve.

I have a similar strange pain sensation in my left thigh where it becomes restless and painful with a band of pressure running around its circumference. Upon waking of a morning I struggle to walk as the muscles in my legs especially the calf muscles feel very stiff, walking on tiptoes helps the with the pain which normally lasts a couple of hours before becoming more normal.

4: Facial pins and needles: The area below my right eye and towards the bridge of my nose has pins and needles with loss of feeling. My left eyelid feels heavy and strange and although I have had my eyes tested and the result have showed that I have worsening eyesight in my right eye it almost feels that my eye is pulling to the right. The pins and needles extends slightly beyond my temple. I also have a stabbing pain in the area which comes and goes without warning.

5: Lower arm pain: This is the strangest of symptoms that I have. My right lower arm without warning can suddenly start to feel like a thousand hot pins are pricking my skin at the same time. The skin does not become irratatetd apart from where I scratch it in the hope that the pain subsides. The only cure that I have found is to freeze a wet tubular bandage and to wear it until the skin becomes numb. I had this issue investigated at broad green and the conclusion was double crush syndrome however no follow up has taken place. worringly this symptom is now showing in my left arm.

6: Loss of dexterity in fingers: As a keyboard player I know my fingers quite well, I am really worried that I have lost control of both hands. My fingers always feel cold even in summer. Both my ring fingers and little fingers have very little sensitivity in them and have both drifted away from the general formation that you would expect to see and slightly curl under toward my palm. when trying to play on the keyboard my little fingers drift outwards and have very little control. I have lost grip in both hand but the worrying issue is that my hands feel clumsy. Tying shoe laces and simple tasks are becoming annoying difficult.

7: Urgent need to urinate: I except that I am now 50 and should expect a little urgency in going to the toilet but sometimes I can find myself caught short even though my bladder was emptied 30 mins before. This is not a constant issue which is a problem in itself as if I knew I had a weak bladder then I could make the adjustments that I needed. The sudden urge to urinate and almost not making it to the toilet whilst shopping for no apparent reason is an issue for me

8: Bowel issues: The same applies as urinating. Sudden urges without warning and always producing nothing but large amounts of gas and mucus. Both issues 7 and 8 are getting worse.

Thank you for taking an interest in this matter and I really appreciate your help into finding a solution to the problem. These issues are affecting my mood. I have become irratable and frustrated and my family is starting to suffer as a result of these issues. My children’s school teacher once commented that I must have had a good weekend when I stumbled and fell during a knee bucking event. i was absolutely humiliated/mortified that the teacher presumed I was under the influence of alcohol.

I take it there was nothing strange or startling noted in the MRI report?

In any case, it was a while ago, and I think it likely that your GP will want the hospital specialists to take another look at you.

I am sorry that to hard having such a worrying time. And yes, it affects the whole family doesn’t it?

Hi Alison. Things have moved quite quickly since I posted. My GP have given me a 14 day referral to neurology so hopefully I can start to get some answers.

You are right that nothing was spotted on the last MRI however this was done during the hight of lockdown and I feel was done in a rush. No contrast was used and I was in and out really quickly. I hear other people had contrast and an MRI that last 20 plus mins.

Mine lasted 3 mins.

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Good to hear on the referral front.

I’ve had a good few brain MRIs over the years and a few spinal ones too, and some quicker than others, but I must admit, yours sounds impressively speedy!