2034625 tn?1392643292

Trying to make peace with limbo...

Hi all.  I posted awhile ago that I was having issues with my eyes.  One doctor gave me a dx of Optic Neuritis and then another took it away after a normal VEP.  They also took away my steroids due to side effects.  I decided then to take a break from looking for answers for awhile in order to preserve my sanity.  

Now I'm back to being determined to sort it all out.  There are days I think I can forget it and other days not so much.  Like today.  I was up most of the night with waves of crushing pain around my ribs.  My neuro says there is no medicine that can help with it, he doesn't want to rush dxing me with anything, but there HAS to be something they can give to help with the pain or muscle spasms there.  Is there?? I am still having tremors.. sometimes more than others... and anyway Sunday was a "more than others" kind of time and I ended up getting a second degree burn on my right arm in the kitchen.  

Any advice from some of you who've been in limbo for awhile on how to get through these kind of things with no meds to help with symptoms?  Any advice from those of you who've got your dx now on how to get out of limbo?  At what point is it enough?  Keep searching?  Accept what is (for now) and go on as best I can?  

I know I sound like the whiny baby that I am at the moment, but I'm feeling so overwhelmed.    Advice anyone?  
13 Responses
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1627868 tn?1333886342
I'm really sorry that you are still not getting any help with symptom management.  That sux!!

My first suggestion is to seek another doctor who will help you with at least symptom management.  That's what I did and I ended up getting a diagnosis a month later.  Have you been with your current neuro for a while?  I sought out another opinion because my neuro knew that I was having symptoms but would do nothing to help me.  He wanted my PCP to give me meds and my PCP wanted my neuro to give me meds.  It ended up with no one giving me meds.

Would you feel comfortable asking for specific meds?  For example, you have muscle spasms.  Would you ask for a trial of Baclofen or something similar?  Or for the tremors you could ask for Propranolol.  Propranolol works really good for me.  On good days my tremors aren't noticeable at all really.  Baclofen, for me, as also been a wonder drug!

Secondly, I think that everyone is different in their will to fight for a dx.  I sought for awhile, but kinda gave up about 6 months ago when I realized that no one was going to treat my symptoms.  After awhile, all I cared about was symptom management and I couldn't get it at all.  After being dx'd with fibromyalgia I sought out a pain doctor/fibro specialist/physiatrist (a rehab type of doc) with the hopes that he would at least treat my symptoms.  Again, this was after I had given up on getting any kind of a dx.

This doc ended up confirming my fibro dx but also worked really hard behind the scenes with the neuro I hadn't seen for 6 months to confirm my MS dx.  This is kind of a long story with all that transpired but I just wanted to show you how everyone is different.

There are others here who had actively sought out a dx from the beginning.  I think I am like you in that I would try for a bit then give up for
awhile.  But in my case my dx came when I had given up and didn't even care anymore.

At the same time, your neuro DOES need to follow you for awhile when your test results, etc aren't "typical" for the disease.  They need to watch you over time to see changes in symptoms, watch for new clinical signs (such as new-onset hyperreflexia or something to that effect) and just basically record your progress over a period of time.

It IS hard and very trying to the patience!  It IS very hard to know when to go on and when to give it a rest for awhile.  It also gets very expensive!  

Are you able to ask your PCP for help with symptom management?  Just be straightforward with them and say your neuro thinks you have some type of neurological disorder but isn't willing to treat your symptoms for now because you don't have a dx.  Maybe they would be willing to help you for now in the short term until your neuro can figure it out?  I sure do hope so!!!

Please don't feel like a baby or a whiner!  We have all been there ourselves.  Take good care and let us know how it goes.  I do really think you should at least ask your PCP or suggest to your neuro specific meds that you would like on a trial basis.
Helpful - 0
1530171 tn?1448129593
Hey dogmum.
Certainly not a good place to be . "Been there, done that"
I will do my best to pull you out Limbo!
No promises though, as most of this depends -not on me- but on you!
There are a lot of variables that are not easily detected and controlled,
however, the least expected here, would be notable improvement.
I've facilitated this a few times for people, including for myself.
The approach I use, is holistic and diverse. From Old World remedies to New Age concepts, from Eastern Wisdom to Western Technological advances.
So for the benefit of the members are you O.K. with posting here and sharing perhaps some personal details, if necessary, or would you prefer private messaging?
Another thing to clarify is that you will be required to actively participate
on a daily basis. In order to facilitate your re-patterning, you will be involved in meditations, breathing exercises, guided imagery, multiple rounds of tapping, supplementation regimen, dietary restrictions, self-testing, daily physical activity-according to your capability-
chanting of mantras, chakra balancing, researching, studying and more!
Distance coaching is challenging, but doable.
If you're game, I am too! Most of the work is yours.
Updating, progress recording and reporting are also part of the "job" description.
If all this resonates with you, I will present you with some questions
in the next post and we'll take it from there.
Let me know.
Helpful - 0
551343 tn?1506830518
Sarah what a wonderful post. I think you covered it completely. I totally agree with all you said. My my it saved me typing lol....

I am on Propananol for blood pressure (1 tablet a day), and it was about 2 years into my illness that i read that they prescribe this for tremors in MS.

I have tried all the meds for MS now, and hate them all. They just make me more tired, and out of space.

Dog mum, I take nothing apart from my propananol, garlic capsules, and cranberry tablets and one special antibiotic every night to support my bladder.

It is good in a way that your VEP was negative, but then mine was POSITIVE lol, and I still dont get a diagnosis of anything.

All I can say is you know your own body and the first thing you have to do is treat it like a temple.

Look after it, like Niko said as well.

Make sure you research all that is good naturally for your symptoms, like ensure your diet is good for muscles etc, magnesium is important for example. And if you SMOKE stop it right now lol (that goes to all of you who smoke ok...lol).

Pace yourself.

Keep a diary and see if there is anything you are eating or doing that kicks the problems off.

The tightness around the ribs can be put down to anxiety, I am not trying to say you are anxious, but the more you worry about your illness the more your brain and mind take over and then they go for it, and give you more things to worry about lol.

I have tightness and pain around there and it was put down to nerve pain. It comes and goes....

Sometimes it just feels as though my bra is on far too tight, then i have to remind myself that I dont actually wear one lol.....

I decided to follow the MS recovery diet, and have excluded dairy, gluten and wheat from my diet (well as much as i can), and have lost nearly 30 pounds in a few months, and feel so much better dieatary and the burning in my right leg is nearly gone, except for when i am stressed like now after my teeth were pulled, but in the main the burning has nearly gone which is bliss, as sometimes it was so bad it made me feel like crying.

Whether or not it is the gluten free diet i have no idea but on research i found that gluten can make the nervous system have problems.

Its really just a case of when to give in and when to live with the problems you have.

At the moment i am just living with the problems i have. I have been sick 6 years and slowly going down hill but have resigned myself that even if the doctor told me today i had MS i would feel the same.

All I do know is that anxiety and stress makes all of the illness worse, like MS/FIBRO/M.E./RA/LUPUS.

I am seeing a specialist clinic in May and maybe i will get answers there or maybe i will be more confused lol......but this is the last time for me.

Take heart we are all here to support you through your journey.

Big hugs. Mariaxxx
Helpful - 0
2034625 tn?1392643292
Sarah, I 'd hug you if I could!  Thanks so much for your helpful reply!  I might try to ask my PCP about the meds you mentioned.  I had heard of Baclofen, (not Propananol), but honestly I had no idea what it treated.  So far my PCP has tried to "keep his fingers out of the pie" as he says, but he's been pretty good about scripting things for me if I specifically ask for them and tell him why.

I have a new neuro who is/was super sure that I have MS, but he wants to see an LP first.  After the last one where the lab doc gave me 4/5 stabs without getting any CSF I'm a little hesitant to try again.  My VEP was actually a double positive which made it a negative (???).  My old neuro wants to do a trans-sternum thymectomy still for myasthenia gravis (that 10 other neuros and all my results have said I don't have).  It's so frustrating because by the time I switched to my new neuro I was fortunately no longer having Lhermittes, was no longer cross-eyed, could stay on my feet, and had mostly normal sensation in my left hand (biggest sensory troublemaker).  So now, even if I have ultra hyper reflexes with clonus(sp?) in my legs, eye pain, binding chest pain (heart workup came out clean as a whistle, GI workup is good too), tremors, occasional foot drop, etc, he wants to observe how things progress.  

Some days I can mostly ignore what's left of my symptoms.  Other days I really wonder if I'm doing myself harm by not pushing them to sort it out so I can get on the right drugs and get on with my life.  I wonder how so many here have dealt with unexplained sx's for so much longer than I have.   Made of tough stuff I guess.  ;-)

I'm seeing my neurologists in June (I think) and he will hopefully be open to talking symptom management this time.  In the meantime I'm going to give talking to my PCP a try.  Can't hurt, right?  This nasty burn on my arm will hopefully encourage him to help me.  I imagined there were likely drugs to help with these things, but didn't know where to start looking.  So, thank you again for the suggestion!  

Niko, thanks for your reply.  I do believe that our physical health can be affected by our mental and spiritual health, and although I am interested in several types of alternative medicine, I'm not looking for a change in that area at the moment.  I thank you just the same though.  Your offer to help is very generous..

Maria, I had all but cut out gluten and sugar from my diet as well on the paleo diet and I loved it.  My neuro sent me to a specialist about the high BP I developed on steroids (nearly back to normal BP thankfully) and she sent me to a dietitian.  Everyone over here is convinced that as an American I must spend a hours of each day at the local McD's and not have any idea how to eat properly.... hmph!  The dietitian is insisting that I try a diet that includes bread and pasta 3/4 times a day.  Last time I tried a similar diet I gained 10 chilos in 2 months, but we'll see.  

6 years- I can't begin to imagine!  I hope you get some answers at the specialist clinic in May.  I think you're right that if the docs told us we had MS, we would feel the same.  I do hope that the drugs they would give us though, would be of some use in slowing progression... It's a fight day for me, can you tell?  ;)  I have pretty much accepted though that I'm not going to know what "this" is right away, but I do hope that one of my docs can help with symptoms.

Thanks to all of you for your advice and support!  Hoping you're having good days today..


Helpful - 0
1917408 tn?1421952040
I have a suggestion to help with your muscle spasms. Valerian essential oil is very effective at quickly stopping muscle cramps and pinched nerve type feelings. Unfortunately, it really stinks! If you get desperate enough to put up with the smell, you can use it mixed with a light carrier oil, like grapeseed, to massage into the effected area. Adding some clove oil and/or citrus oils to your massage mix, really help with the overpowering smell and the clove adds significantly to the pain relief, but go easy on the citrus, it is more for the smell, but too much can cause a skin irritation, especially combined w/ sunlight.

If it is a really bad spasm, you can even put straight Valerian on it, once you determine that you don't have any reaction to the oil and very few people do.

My most lingering symptom from my major bout of symptoms last fall was the feelings of an early stage bladder infection. I have been using straight Valerian essential oil on the foot reflexology point corresponding w/ my bladder for a little over a week and am finally feeling about 97% normal there for the first time since last October. For me, at least, the funky smell is worth it; I wish I would have given in and tried it earlier! I am almost finished with my Herbalist Certification so I use a lot of alternative medicine when it is practical to avoid prescriptions.
Helpful - 0
1530171 tn?1448129593
Hey Laura,
My wife WAS a  clinical dietitian. I have some stories to tell you!
The ADA and CDA protocols are in tune with big Pharma and big Industry,
as they are funded in then millions of dollars annually.
If you are a good researcher, you will find out how the operate  as associations and how potentially dangerous dietitians' advice can be!
For example, coconut oil, considered one of the top "Functional" foods
with tons of scientific research to back this up, is "Backlisted" by them
as an artery clogging saturated fat. By the way, it is actually one of the most beneficial oils for c/v and heart health!
I have looked into hundreds of studies on coconut oil, regarding
FMS,CFS,Arthriis,Alzheimer's, Parkinson's, heart disease and more.
The proposed diet to my opinion is not just flawed, but outrageously
dangerous for your situation. And weight gain is the least of the problems.
If you want further explanation, I will be pleased to send it to you.
One certain fact is that carbs will contribute greatly to inflammation,
increased pain, fatigue and many other issues in the short,medium and long term.
Sorry to sound like an alarmist, but one must be aware, knowledgeable and proactive for overcoming  any serious health challenges.
Gone are the days, that we trusted our doctors, pharmacists, dietitians,
Hope you get some real answers.
Take care.
Helpful - 0
1530171 tn?1448129593
Correction: ... as they are funded by them ..
In between things today and multi-tasking!
Helpful - 0
2034625 tn?1392643292
I've never heard of buying valerian in an oil format, but I will look into it.  I eat valerian almost every day, not for any specific reason, just because I >love< it!  A little bit of balsamic vinegar and raw olive oil with feta and walnuts over valerian leaves...best salad ever!  

I agree that when there is a natural alternative that works, natural is best.  Thanks for the tip!
Helpful - 0
2034625 tn?1392643292
I'm not surprised that they blacklisted coconut oil.  They tend to do that with a lot of good foods (while letting other worse things through) and then years later change their story.  I try to stick to natural eating and mostly disregard the changing fads of what they tell me is good for me or not. e.g. soy was the health rage a few years ago and now they are saying to absolutely avoid it.  

As for the new diet, my husband - who's Italian and can't understand anyone not digesting loads of pasta at a time - has been pushing me to give this diet a try.  One week, he said.  I already had a significant amount of problems when I first moved to Italy dealing with the high carb diet here, but he said it would be different on a specific plan.  Knowing I'd not silence him on it until I tried, I'm giving it one week and hoping it doesn't cause too much of a problem.  Day two - it's 10 minutes to 4 am and I've been up sick for 2 hours so far.  I figure if I can limp through a week of this and he sees the obvious change in me he'll lay off about the food issue and just maybe stick up for me to my docs a bit more on the food front.   I must say, I can't wait to get back to my mostly-paleo diet.  

This line - "Gone are the days, that we trusted our doctors, pharmacists, dietitians, blindly." - made me smile because that is exactly how my DH operates (and feels that I should operate as well).  Had I done so I'd be recovering from an unnecessary surgery and believing that my left hand wasn't "working" because I'm right handed.  ha!  

Thanks very much for your reply!  
Helpful - 0
1917408 tn?1421952040
I am so glad to know that there is a use for the fresh leaves. You can't use the root of the plant until it goes dormant the second year so I guess I wasted some great salad greens last year. I am only familiar with the root for essential oil and the dried leaves for tea, but I am anxious to try it in my salads this summer! Thank you for giving me a new use for my plants.
Helpful - 0
2034625 tn?1392643292
That's so great that you grow it!  My mom has been looking for a way to grow the plants since she discovered it when she came to see me.  As a salad, it's much sweeter than spinach or romaine, etc.  I also add a few good handfuls of it to smoothies when I'm looking for a light dinner or a good breakfast.

Any suggestion of what kind of store my mom could look at to get some of the plants?  
Helpful - 0
1917408 tn?1421952040
When I looked further into it yesterday, the medicinal plant that I have is Valeriana officinalis and it is supposed to be bitter, but what is usually eaten as salad greens is Valerianella locusta.

I found a place to order seeds yesterday, for the Valerianella locusta, which I think is the variety this seed company is calling 'Corn Salad Bistro' and several other varieties of Valerian salad greens, commonly known as Corn
Salad. I will paste the web address for you to pass on to your mom. I think there are varieties of this in the Spring Salad Mix commonly sold in American grocery stores. I like the Spring Mix, but I never knew what exactly I was eating. I am looking forward to having a fresh supply!

Helpful - 0
2034625 tn?1392643292
Good to know, thanks!  My mom will be grateful!  I am curious what the nutritional value of this kind of valerian is vs. spinach, kale or the other greens.  Going to check it out now that you've given me the technical name.  

Thanks again for the info! :)
Helpful - 0
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