@sparkle

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sparkle

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

Stumbler

@Stumbler

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........ ;)

sparkle

@sparkle

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! :)

judy-gy

@judy-gy

Hi, three things you can do while you wait: 1, takd tumeric capsules and 2, vit d3, large ammoumts. Both immunodulstors which wont stop mri showing diagnosis, but may calm current rampage. 4. Get as much mindfullness info / practice ad you can. Best wishes. 4. This may all calm enough gor you to be able to work, my first relapse is not in my life now. Jx

sparkle

@sparkle

@judy-gy - thanks for the suggestions! will check these out. and counting down the days to the mri. :)

cameron

@cameron

The agonising pre-diagnosis period is my definition of hell on earth. After diagnosis, life starts getting back to normal, because you'll be on treatment and see for yourself how things improve. My own 'lightbulb moment' was the consultant (seeing me in bits) who said: ' I'm not telling you that you have a terminal illness. You have a chronic condition and it's up to you to manage it'. I have, and so will you. xx

sparkle

@sparkle

Thank you @cameron! Yes, it's this waiting. I'm off work right now due to 'disability' during the waiting since early November. So I have too much time to think. :) And no real news to tell my employer in the meantime, or when/if there will be a diagnosis, treatment etc. My job is a field heavy one too and they haven't been awesome about this, so I suspect a 'relapse' if this is MS would go over like a ton of bricks. I don't think they would want to do any accommodations now as a small employer. So I'm trying to be positive but in the back of my mind also thinking that this may lead potentially not only to needing to change jobs but careers as well, since 95% of the jobs in my area area are field-based (physically demanding, very long days, year round). I already have another chronic illness which was a challenge that my employer doesn't know about.