Yesterday I saw a neurosurgeon thinking the tingling, weakness and discomfort in my arms could be C-spine related, a compressed nerve or something. I’ve been having worsening symptoms over the last 3-4 months. However, after examing me I was told that I have hyperreflexia in the arms plus my C-spine MRI showed some possible suspect areas in my spinal cord. I’m now waiting for another MRI of my brain and full spine. I’m an ICU nurse and work with the neurosurgeons so when I got my c-spine MRI report I thought I’d email a neurosurgeon thinking my symptoms must be related to the degenerative changes, so it was a bit of a blow when I was told that my MRI and symptoms are pointing to something neurological. My symptoms all started out of the blue. I got sudden discomfort in both arms and my arms became weak for an hour or two. This happened mainly looking or reaching down. In between these attacks I felt OK. Then the arm weakness and tingling happened more often without an attack. Now I have much more persistent weakness and tingling and about a month ago my right leg thought it would join in too and it’s tingling and at times feels slightly different to walk on. So I’m really scared. Being a nurse I know too much! And it’s great timing…not. I’m going on holiday on a Caribbean cruise next week so now I’ve got to let my travel insurance know I’ve got a possible undiagnosed neurological condition. I’ve decided that I’m going to try and put this to the back of my mind and enjoy my holiday, I’m sure the drinks package will help with that!
Anyone had similar symptoms? Anyone had issues with their travel insurance whilst waiting for a diagnosis? x
Update: Phew, travel insurance was fine. I’m covered and I just have to update them once diagnosed. Had to answer some questions ie is it cardiovascular? Is it abdominal? Is it a brain tumour or aneurysm? Didn’t even ask me about my symptoms. Sent to underwriter and all is good.
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Hi there😊
Tingling and pins and needles are pretty common for me, particularly around my diagnosis and for a few years after. The first symptom that I really noticed was something called l’hermitts which was pins and needles shooting from my feet up to my waist whenever I nodded my head, which was basically extending my cervical spine. The next one was weakness in my fingers which really affected fine motor movement like picking up change from the Palm of my hand. Legs were a few years later, and on a really hot day they just stopped working for a couple of hours until I managed to get into the car with the air-conditioning and then it was all back to normal in half an hour. It is pretty common for people with MS to struggle when it’s hot, there’s a syndrome called Uhtoffs that describes it. I also struggle with cold because it makes everything spasm, so I can’t bloody win!! As they say with MS, if you’ve met one person with MS then you’ve met one person with MS. Sitting down with other people who have MS is fascinating, I expect to be comparing symptoms but it’s rarely more than 20% that we have in common, somebody should invent symptom bingo😉
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I’m glad you managed to get travel insurance sorted. Very often ms made no difference to the price I was paying, it just meant I couldn’t do it online because I need to speak to them. The problem with ms is that it so different from person to person that the insurers Will blame absolutely anything on ms if you haven’t told them about it. Enjoy the holiday!!
Please bear in mind that the people with MS whom might have nursed – quite possibly inpatient folks with very advanced disease - are not typical of the MS population. That is particularly the case now because the new highly effective treatments for MS are available and they didn’t used to be. People with RRMS have a better chance of doing much better for much longer than they used to.
To be honest I’ve been an ICU nurse for the last 20 years and I’ve never had to nurse an MS patient. I really do not know that much about the condition, just the very basics.
I’m just going to carry on, work through the bad symptom days, stay positive and try and enjoy my holiday and Xmas x
Hi I use holiday extra for holiday insurance not had a problem with them they are reasonable price aswell good luck for the future
Heyo,
I just wanted to give my 2 cents in reference to travel insurance. Even though you’ve got yours sorted, maybe my experience can still help someone else?
I traveled about 6 months after being diagnosed with ms, but had a possible different condition pending diagnosis unrelated to MS at the time and I didn’t have a good time due to the ms.
I looked online as it was during the more isolation phases of the last few years, but due to ms the first one said to call them. I have problems phoning unknown people/businesses so that was hell for me.
The first provider said that they can not insure anyone with MS unfortunately and I was dat a loss - and asked the agent on the phone what I should do then.
They were able to give me the phone number of another insurance company who may be able to insure despite ms.
So I instead ended up looking for the website of the company that the agent gave me the number for and tried there. Another 'please call us if you have this disease " and then speaking with their people and I was able to be insured despite Ms and what was believed to possibly be sleep apnoea.
I booked the insurance about 4 months before tee travel date, and during that time the diagnosis I was waiting for didn’t get confirmed. But it was not an issue - and thankfully I did not need to rely on the insurance during travel either.
On a different note;
Thank you for what you do in your job. Every nurse I’ve met has been nothing but amazing during the course of my diagnoses and treatments across different fields, and I am full of gratitude for the deeds you and other nurses (and other medical professionals) do.
I am sad that you are having such problems with your symptoms. I am fortunate that I’ve not had any pins and needles or weak limbs so far, but I can imagine it is quite literally debilitating. I don’t have anything to recommend as such on that…
I hope you can still enjoy your holiday despite (and perhaps in spite) the symptoms harrowing you.
I hope you get a clearer diagnosis soon, and treatment for whatever it may be in the end.
All the best wishes
That’s good. It’s just that I know of nurses with suspected MS who are horrified at the thought, having nursed very ill people as a student nurse or whatever. Enjoy your holiday.