Waiting in Limbo for Diagnosis
Hi! I'm new to the site and waiting in limboland for a diagnosis.
I'll have a follow up appointment with my neurologist in January, who I saw for the first time about 10 days ago after ending up in emergency twice in early November. I have an MRI in 3 weeks. For the last month, I've had tingling in both legs and left arm, along with weakness in my left bicep and hand. Also in the first couple days there was tingling in my right fingers and some tingling/numbness in my face, which have mostly gone away. It all came on very quickly within 24-36 hours and has been stable for the last month or so. My heart rate has been up with little effort, but the tests we did have me still within normal. I am especially weak on my left side and I am suffering serious fatigue. I was pretty active till the end of Sept with fieldwork for my job. I've never had any tingling/numbness/weakness/fatigue before.
My GP and the emerg doctors think it's probably an auto immune disease, but they don't know for certain yet.
Since then, we've ruled out Guillian-Barre Syndrome, vitamin/mineral deficiencies, STIs, along with a possible neck injury from fieldwork/physio that a CT scan cleared. We did a whole bunch of other tests with neurologist too for good measure, just rolling in. I had a positive ANA test but my GP thinks it's a false positive.
I am just having a hard time having to wait for answers till January-ish. I know that for where I live in BC, the wait time for a neurologist is many months, so I'm lucky to get in so quickly. The neuro said we may not have a diagnosis when we next meet, and she doesn't want to proceed with any treatment till there's a diagnosis because the treatments are different depending on the cause. At the moment I'm not getting worse but I'm not getting any better, either.
Feeling a bit scared and nervous. Dr Google isn't always the best companion. My employer hasn't been very supportive and whether or not this is MS, this may be career ending for me with a demanding field job. I also don't have any benefits through work and having anxiety about money. But trying to stay positive... my GP and my Mom have been awesome, along with a close friend.
- sparkle
Hi @sparkle and welcome. Having read your story, I can see that this is a trying time for you, as it is for anyone in a limboland situation. Unfortunately, the additional worry and stress will only add to the situation. You have to try and accept this as one of the challenges that life throws at you from time to time. Ah, Dr. Google! What a great resource. Almost information overload. There is some good and informative stuff out there which will be useful. BUT, there is also a lot of stuff out there which is not in the correct context and can scare the life out of you. Always stay with creditable websites like the MS Society or the MS Trust (in the UK). MS as a condition is notoriously difficult to diagnose, involving the elimination of all other likely causes. But, if it is MS, then this is now a manageable condition, as @orlando27 says above. It is NOT a pre-determined one-way express ticket to a wheelchair. So, for the time being, be kind to yourself and take things easy. I know, Christmas is coming, which can be another stressful time. Work with your family and friends this year and allow their assistance when it's offered. Life does go on........ ;)
Thank you both @orlando27 and @stumbler so much for your kind and thoughtful words. :) Yes, doing my best to not worry too much because it doesn't change the outcome. Trying to focus on other small things in the meantime as I can, like my writing and learning guitar for a few minutes here and there while I wait. I'll check out the MS Society and MS Trust websites, I appreciate the recommendations! :)