Old 06-01-2011, 10:19 AM #1 (permalink)
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Red face Wishing sitting waiting

Hi everyone,
I'm new to this site so hope I've posted in the right section,
My question is does anyone else get frustrated and sick of waiting for a diagnoses?
I'm in the process of being diagnosed with a few possiabiltys of motor neuron disease, spinal mucular atrophy, spastic paraplegia and musuclar disrophy... mnd is the one my neurologist is most concerned I have.
It's not so much off not knowing what I'll be diagnosed with as I have come to terms that either way it won't be able to reverse my current state I can't stand, squat, bend over, barely walk or lift anything that ways more than a a couple if dinner plates. But the most frustrating thing I'm finding is the waiting, 9months ago my life was perfect not a care in the world at 26 i was living it up, but now it like I'm stuck in this limbo of waiting as I watch my friends travel and start family's I'm off to docs appointments and filling out paperwork for a disability pention, sorry for the rant bur I'd just like to no how does everyone cope? I can mo longer work which was my passion as I was a chef and lived and breathed cooking I don't have any real hobbies other than that can anyone suggest anything to make time go faster? Lol
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Old 06-01-2011, 11:44 AM #2 (permalink)
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Default Re: Wishing sitting waiting

HI

Limboland can suck--but at this point, I'm not sure I want an answer unless one of my differentials seems fixable (c-spine and lumbar spine would be fixable)

I'm persisting because the doc hasn't taken MS off the table--but otherwise, I think I'd be treating symptoms as they develop. I couldn't breathe-so now I have oxygen, for example.

I fall--doc recommended a walker--not a problem--I can't get up when I fall.

You have several possibilities--and not all are dire. Your myopathy could well prove not to be ALS --which is great.

You're young--enjoy what you can as much as you can while you can. Diagnosing all these muscle and motor neuron diseases can be a long-drawn out process, unfortunately.

Try to keep your mind on things you enjoy. You like to cook--make up some new recipes. Spend time with your friends. It's hard, but try not to dwell on your health. Time passes faster when you occupy your mind with other things. If you can get out and about--go out and have as much fun as you can.

I try not to give myself too much time to 'think' about the possibilities. It usually works pretty well. If you're finding yourself depressed, see if perhaps your doctor can offer some suggestions for that--same for anxiety. Both perfectly normal when you're concerned with your health, I know.

When you get some specific answers--we'll still be here to answer your questions and offer whatever support we can. Wish I could help more.
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Old 06-01-2011, 02:45 PM #3 (permalink)
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Default Re: Wishing sitting waiting

Limbo land, I love it. Yes emz, the waiting is terrible. After each test, there is the long painful wait for results. It does seem to get a little easier, or maybe you just lose a bit of fight. some off us remain in limbo land after years, which is hard, especially when you can't work much.
Feeling for you, I am sure you will get some answers and find out what's going on.
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Old 06-01-2011, 03:42 PM #4 (permalink)
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Default Re: Wishing sitting waiting

EMZ, yes that place of not knowing is a hard place to be, but remember everyday is a Gift to each of us. We do what we can, not worry about what we can't. No matter the diagnosis your body is telling you what it is capable of or not. If it is treatable condition that would be wonderful, but if not, what can ya do anyway? What's in a name anyway, it is what it is until futher notice.
As the sun comes up each moring we can smile and say Thank for another day and do the best we can in that day, even if we simply just make someone else smile! .
I remember a famous qoute from Kung Fu "Worrying does not change the future, Grasshopper", nor can I change one gray hair on my head. Knowing this puts the heart at ease. My son put things into perspective when we recieved my diagnosed, as we talked about it he said I could also get hit by a bus or have a heart attack too that would take my life, it immediately put things into perspective for me not to dwell on the negative or thats all you will see around you, so I now try and look for all the positive, it's our Choice.
My prayers are with you for peace.
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Old 06-01-2011, 07:54 PM #5 (permalink)
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Default Re: Wishing sitting waiting

I think it suxxxxxxxxxxxx.I wish they had a blood test for these nueromuscular diseaeses i feel your pain.........hang in there.....
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Old 06-01-2011, 08:04 PM #6 (permalink)
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Default Re: Wishing sitting waiting

Sportsman, I have been waiting for 4 years and that's less than some people on this forum ( and my husband is a neurologist). That's why I have my signature, saying what it says. It comes down to dealing with the weakness and disability day to day, but in the end you get over the fear and you get on with living.
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Old 06-01-2011, 08:55 PM #7 (permalink)
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Default Re: Wishing sitting waiting

Ditto waiting is horrible. I am 24 and just diagnosed after 2 years of constantly going back and forth to dr. appts while the rest of my friends 'lived it up' as you say. I think the thing that made it the hardest with waiting is actually that friends would constantly ask you 'what do you for fun?' Well besides, work, school, and um on average 1-2 dr. appts a week that pretty much maxed out my schedule. I would personally say to get back a hobby or work if you can while you still can. I have been diagnosed but I am still attending a graduate program for my MA and working 3 part time jobs. Now, with this said, I have cut back my hrs. significantly at these jobs and I don't have energy to do much else but sleep when I am not going to school or work, but it works well for me. It gives me a reason to wake up in the morning...and having goals short term and long term are so important...no matter what outcome of your diagnoses may be. I wish you best in your waiting game...know you are not alone in this.
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Old 06-01-2011, 11:29 PM #8 (permalink)
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Default Re: Wishing sitting waiting

oh my you sound like me tho iam not as weak or anything but a few months ago my life was perfect... they were testing me for MS but cant seem to find anything on the etestig for ms... what were your beginning symtoms?
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Old 06-02-2011, 03:35 AM #9 (permalink)
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Default Re: Wishing sitting waiting

Thankyou all for your comments, I'm living day by day and that's working well for me at the moment I have a great bunch of friends who are fantastic. Munecagirl22 my first symptoms were aching muscles in my claf and a very stiff felling in my left ankle plus my muscles would pulsate were I could see them move under the skin at that stage I thort I mite of had a vitamin deffenciy or restless legs syndrome, what were urs?
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Old 06-02-2011, 08:42 AM #10 (permalink)
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Default Re: Wishing sitting waiting

EMZ- Did you have an EMG? If so, what were the results? Also, how did things progress after the stiff calf and ankle?
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Old 06-02-2011, 10:46 AM #11 (permalink)
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Default Re: Wishing sitting waiting

Hey yea I had a NCV and EMG NCV came back normal EMG came back abnormal now waiting to have muscle biopsy in a few weeks, stiffness in calf muscle and ankle doesn't go away ever I have become use to it now, the weakness in my legs and arms is progressing though and my left hand wrist is also stiff and weak. I've had legs weakness and the stif calf muscle and ankle for 9months and my left hand tightness and arm weakness for about 3months now arms are alot better than legs, only really notic arm weakness when brushing hair reading hook righting ect were as legs it's the basic thinks like I can't stand without assistants or grabbing something and wedging myself up lol
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Old 06-03-2011, 08:18 AM #12 (permalink)
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Did these things seem to hit you all at once 9 months ago or was it a slow progression?
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Old 06-09-2011, 07:53 AM #13 (permalink)
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Default Re: Wishing sitting waiting

No it was a slow progession, my friends noticed I was walking differently before I even did as my ankle in my left leg was constantly sore and stiff then start with I couldn't bend down like squat and had some weird muscle rolling threw skin episodes, so it didn't just suddenly appear came on very slowly andto start with didn't think much of it thort I was lacking in b12 maybe went to the doctors at the stage were I couldn't stand up from sitting position ect.
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Old 06-09-2011, 09:37 PM #14 (permalink)
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Default Re: Wishing sitting waiting

Hi EMZ
I'm in the same boat as you (waiting for diagnosis), except I don't have any obvious symptoms apart from fascics and a couple of EMGs no-one seems to like (I see people on this forum use the phrase "dirty EMG", but I'm not sure what that means). However, once a neuro says the dreaded words "MND", the process becomes as much a mental as a physical challenge. Fortunately for me I have been offered a possibility via a second opinion that my symptoms may also indicate a neuropathy that is not MND, and I am undergoing intravenous immunoglobulin treatment to see if I respond to that. If I do, it's not MND. I'm sharing this with you to illustrate that even in my short experience (8 months), the process of diagnosis is a journey with a number of possible outcomes. I am young (ish), and have a couple of young kids that require plenty of chasing after. If you're looking for advice I would suggest that you don't try to project too far forwards in your mind, don't do the what-ifs and why-me's. Intereact with your friends as much as possible, remain active on social sites, try to stay involved. Focus on staying mentally tough - it requires conscious effort but is achievable. Everyone's life is finite, it's what you do with the time you are allotted that matters.
Good luck and stay strong
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