Anonymous
5 years ago
Undiagnosed?

Hey! I haven’t noticed any posts directed at the people who are undiagnosed that are on this site. Being one of them…thought I’d start a conversation. Anyone having problems getting diagnosed or are you just in waiting? Problems dealing with symptoms without an official reason? What brought you to this website?

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hi chels , i havent started a new post about being undiagnosed but have mentioned it elsewhere , im waiting for my scans and have been having symptoms for 6 years , this is the first time i have been referred for the mri though , and this only happened because i moved dctors , my old gp fobbed me off with every excuse going .. as soon as the doctor told me her suspicions of what was wrong i immediatly started research to find people who have MS , mainly to see that someone else felt as bad as i do , or if it was MS i have ..i thought at 1 point i was going crazy and was the only person in the world that felt this way i spent every other day cryiny because i thought i was dying . harsh i know but having pains and sensations when the doctor has no idea is scary , you expect some sort of reassurance from a professional , i got rather the opposite xx

Although, I was diagnosed pretty quickly. In the month and a half that I was really sick I was told I was dehydrated from vomiting which was why I was lightheaded (even though I told her I wasn’t lightheaded, everything was spinning), then I was told I had a urinary tract infection and that is causing my nausia and spinning, then I was told I had the flu and they took chest xrays when I told them I was vomiting, spinning (for the third time in the month and a half), and this time had lost the hearing in my left ear (What a chest xray is going to show, I have no clue). At that point I was done! I knew neither was correct, so I wouldn’t take that as an answer. I wasn’t going to wait around for me to get more sick! We continued to go through quite a few drs to finally find someone to say: “Hey, this isn’t right, you are definately very sick, you can’t even keep your eyeballs still!” He got me into an mri 15 minutes later and called me with the results the following morning. He then called around for an hour and found a neurologist specialized in ms that saw me an hour after that. You have to fight for yourself, especially when your symptoms may be “invisible” to them. Keep going from dr to dr until someone is willing to take the time to listen to you and help you out. You’re more important than that and deserve to be treated with dignity and respect. Don’t take their silly exuses as an answer. Yes, we racked up about $500 in copays that month, but I will trade that for my health and for answers any day!

Chels i am obe of the undiagnosed i have had my MRI and a consultant said it looks like MS but i am waiting for my neurology appointment on tuesday to be official told yes or no. It is horrible this limbo stage where all you have is whispers and hear say from doctors, friends and the internet. Chin up and push for appointments. Keep us all in the loop 🙂


Anonymous

Madmaz1 – I can totally relate to your experience. There were many times during my last flare up that I just broke down and sobbed. Still do sometimes when things get particularly rough. I didn’t get much reassurance from my doctors either. there was only one specialist that seemed at all interested in figuring out what was going on…and I only saw him once because he was an in-between specialist.

Jat721- Thats awesome that you found a doctor that finally was willing to work with you…and quickly.

DanRB80 – you as well. Hope everything goes well at your Neurology appointment and that you get some answers!


Anonymous

Realized I haven’t stated my experience on here…so I shall…

Have had two flare ups. One in 2007 and one a year ago. Both landed me in DR offices. The one last year was the worst and had me nearly bed-ridden for a few months. I saw my GP multiple times, a chiropractor, massage therapist, physiatrist, and a neurologist. I had a spine x-ray, blood tests, and an MRI. All clean.

The flare up last year left me with some, apparently, permanent symptoms. Went to see my GP recently about a new symptom (what appears to be something like Optic Neuritis) and she is sending me to a new Neurologist because the new symptom is worrying her and she doesn’t believe the end explanation for whats wrong with me is ‘vertigo’ which was the last neurologists diagnosis. I experience vertigo but its one of the least worrying symptoms of mine.

So…we’ll see if I get accepted to this new neurologist. Last time I tried to get in to see a new one they rejected the referral.

Hi guys.
I have been an MS query for several years now.
I first had symptoms back in 2007 when i was in the USA, but it was put down to gastric issues, sickness and illness (even though i wasn’t being sick) – i was on a drip for 10 days and could barely walk.
A year later i had another episode and was in hospotal for 2 weeks. That was put down to a UTI, then it was Lymes Disease and eventually after MRI’s and a Lumbar Puncture my Dr diagnosed MS with a little ‘?’.
I returned home to the UK at that point and the Dr’s here wouldn’t accept any of the medical tests or results and therefore decided that i will only be fully diagnosed if i have other episodes recorded whilst in the UK.
So far i have been lucky and only had minor issues, but nothing that they will formally attribute to MS.
So i’m stuck in limbo… 🙁
I’m glad i haven’t been really sick to get the full diagnosis, but sometimes having it confirmed would be good, for lots of reasons.

when my Neurologist told me I had MS, I sat back in the chair and said ‘thank goodness for that!’ to which he said that isnt usually peoples first reaction! ha. but I totally get where you’re coming from ‘LIMBO’ is the worst place in the world to be.

I’m reading this and getting slightly confused…I have gone from first symptom to diagnosis in 6 months, they’re thinking 3 relapses in this time and highly abnormal MRI’s…I read all your stories and think you’re all so brave to have gone SO long with symptoms. Is my experience really unusual?x

Mine was 4 years in total, two years trying ever alternative method known to man, then two years with dr’s. My GP only referred me to Neurology after me begging, he had previously diagnosed my problem as a ‘trapped nerve’ this conclusion he came to from his extensive examination, the laying of hands on my shoulder through a jean jacket!!!! so I really think it is down to your GP, mine turned out not to be great, ive now changed!


Anonymous

@ Ophelia…I’ve seen it go both ways. Either you end up in LIMBO for absolutely EVER or you get diagnosed immediately. Its hard. I haven’t had to wait for as long as some people but I’m just sooo very ready to have a dx just so I know.
I’m actually currently battling panic attacks and a complete meltdown because of my phone call from the hospital yesterday. This is something like my last chance for a dx… (long story that every time I go to put it in a post sounds like the WORST pity party) and I just know I’m going to be denied…again.

Anyways…getting a dx is hard.


Anonymous

@ Roni…I’m a few years behind you…but I’ve had the same experience.

Oh I’ve had the limbo without a doubt, got diagnosed 10th April, I wasn’t given ANY support numbers just told that ‘someone would be in touch’ I didn’t see the ms nurse until 3 weeks later (doesnt sound like long but felt like a lifetime) I’ve been told I’m a candidate for beta interferon but don’t see the consultant until June 21st. I’ve felt totally abandoned and almost like I’m just waiting for another relapse. Really getting me down especially as i’ve been off work for nearly 6 weeks (hence the bad day!!) Shift.ms has been my lifeline!!!! Can’t thank all you guys enough!!!xxx

I was lucky to be diagnosed within a few months of my first suspicion, but I can take it back years now when I think about little things! Once diagnosed I was on my own from March to August really as there was a lot of hassle with treatments etc! So I get the limbo bit! I was told first line treatment wasn’t strong enough for me and had to fight hard for a second line treatment that in the end I was incompatible with. Then there was a funding issue in the hops for the alternative med and in the end I asked to be put on the firstling treatment in the meantime! So glad I did that as it has worked perfectly for me so far. I have less lesions than I did a year ago and nothing new. So it goes to show that doc’s don’t know everything! Sometimes you have to stick to your guns, and seek a second opinion if you think you’re right about something and they’re telling you you’re wrong.

At the end of the day it’s your life, the doctors finish work and go home, you don’t get to do that! You need to be the one who keeps pushing it. Be proactive and don’t allow them to fob you off or leave you without an answer. I hope you get sorted soon Chels and in the meantime this is a great place to get answers that come from experience!


Anonymous

@ Ophelia – A week can be a life time when you are waiting for something like that. Time just seems to go extra slow just to spite you. It sucks. If nothing else…you should bother them if they take too long to get back to you. Don’t let yourself get lost in the shuffle. remind them that your there and need their help if need be. Better then waiting and never getting what you need.

@aoife – Thanks and I agree. I’m very proactive and I push. But I am sadly unable to do any more then hope and pray atm.

I have been suffering with what was thought to be labrynthitus every few years since 2001 but only got my MS diagnosis last month after treatment for labrynthitus made things worse. I then decided to visit A&E with a droopy eye and double vision. This resulted in various scans within 24 hours including a MRI. This is how I got my diagnosis of MS quickly although I have not got my appointment with the neurologist to discuss it any further until 28 May.

I think I have been one of the lucky ones, noticed my first symptom in june last year but was fobbed off, then another in november for which my doctor mentioned MS straight away. I did have to go private initially to get the process underway, or I’d have been waiting months just to get my first neurologist appointment. After having 2 recorded relapses, my MS nurse (who is brilliant) yesterday told me I definitely do have it, but am waiting to get the official diagnosis from my neurologist, so although still sort of in limbo, I’m really close to being properly diagnosed and am also a candidate for beta interferon, so hoping to start that soon.

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