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428506 tn?1296557399

Symptom relief with no diagnosis?

Hi All,
I have questions surrounding the issue of getting some relief from symptoms when I don't yet know their cause!  

I've had "weird stuff" going on for about 6 months.  So far, I have taken no medications (nor have I really been offered much).  But even if I did get a prescription, I'd still worry that....

If I get new symptoms, will I just be told that they are side effects?  That is, could taking medication complicate identifying and reporting new symptoms and/or progression of old symptoms?  Is it a good idea to seek treatment before diagnosis, or are most treatments only available with a diagnosis?

Also, the only treatment I have been offered is anti-depressants (ADs).  The neuro told me that an off-label use of AD's is to treat some of the stuff I have been having (tingles, burning, pains, etc..)  In addition to my above concern, I also worry that if I take AD's as treatment, then future doctors will just label me as depressed and it will be harder for me to get any more testing.  I'll likely move within a year, so I will likely be changing docs not too far in the future and that is why this is a big issue for me.

So I feel stuck.  I have not been offerered a lot of options to control symptoms, and I have trepidations about the AD's.  At the same time, after 6 months, I feel I really need some relief, for my comfort as well as for the sake of my personal and professional life!  

My PCP gave me a prescription for oral prednisone (sp?) awhile back, but I never took it.  Neuro #1 would not even look at the bottle and laughed that I was offered anything.  I forgot to mention the prescritpion to neuro #2, but he offered AD's, and did not mention other options.

I am seeing my PCP tomorrow about ear and eye stuff.  I see neuro #2 again in late July.  While #2 was less awful than #1, I still felt pretty much dismissed.  

I had a 1-month "episode" starting late Jan, 1 month of feeling ok, then ~2 moths of feeling worse.  Now I am feeling "better," but still worse than what "normal" was before all of this began.

Months ago I just wanted to know "what is this??"  Now, I just want to feel better.  I've tried to do what I can to improve diet and lifestyle, but it's not enough.  Are there other options outside of AD's that may be available without a diagnosis?  Any home remedies or ideas?  Tingling/burning/aching (mostly face hands & feet), as well as a spacy "full head" feeling are the symptoms I'd like to target!

Thanks for "listening" and for ANY advice!
  

5 Responses
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Avatar universal
Hi.  I agree w/ Rena about Amitryptiline. I take it for fibromyalgia - low dose of 20 mg before bedtime - I sleep great and it also helps w/ nerve pain.  

It is used at MUCH higher doses to treat depression - so future dr.s should be able to tell by the dosage that it was prescribed for an off-label use.

One alternative to medication is Omega 3 Fish Oil - which I've been told helps cognitive function.  

Best wishes,
Julia
Helpful - 0
428506 tn?1296557399
OK, so short of a miracle bathtub home remedy, how about any tips for how to not get too distracted by symptoms?  Most of my stuff is mild compared with what people here describe.  

I just want to get through the day (or a good chunk of it!) without letting all of this nonsense interfere.  I could make up for a couple of days of poor concentration, but after months, I am worried this is going to really mess with my professional development.

It is difficult to be honest with myself on this, but I think I may actually have some mild cognitive trouble.  Ppl in my personal life notice some things with how I am speaking.  Worse, a close and trusted co-worker told me they think my concentration and critical thinking are impaired.  It hurt, and I argued that I am just distracted by this nonsense.  But they asked a question:  "If it was just your foot that was hurting, and you didn't know why, would you still not be able to concentrate for weeks on end?"

I don't want people to know what is going on with me, since I am at the start of my career AND not in a permanent position!  Sorry to whine and plea, I just hope to get some control over this.  I will ask my PCP about this tomorrow, and of course, my neuro at my next appointment in July.
Helpful - 0
335728 tn?1331414412
I can relate totally to your frustration my dear and I wish that there was a cut and dried answer to all of this falderall!  I too would like to get on with my life and although I did enjoy going to the lake it certainly was not the same as it used to be!  Congrats on quitting smoking though...I did it last July and I know it can be really tough and to quit junk food at the same time??? You must be a very strong minded person to be able to do that and I do admire you for it.  If there was some sort of home remedy or something that I could give you I certainly would but so far I have found nothing to appease this painful body of mine!  I don't know that frustrating is the word or not!  I hope that you are able to get some relief and possibly someone else here may have some other ideas for you to follow and please know that I am behind you 100% in your search.  I hope that there are answers in the future for you.

Lots of Hugs,

Rena
Helpful - 0
428506 tn?1296557399
Hi, Thanks for the reply and advice.

To clarify, I am not on any ADs, or any other medication.  

Neuro #1 said maybe MS until clear MRIs, then said I was depressed & suggested Prozac.  I said "no thanks" and droppred him.  Neuro #2 says maybe Fibro & offered cymbalta (sp?) the 1st time I saw him, saying an off-label use is to treat the neuro symptoms I have.  I saw him again about 2 weeks later for an EMG and mentioned my lifestyle efforts (I quit smoking, and improved diet &exercise).  Once I mentioned this, he said he would NOT recomment cymbalta since I was successfully making those changes.  But I've been off the smokes and junk food for 7+ weeks, and still have a lot of discomfort.

As for changing residence, I am not sure when I will move.  My current position is a 2 year appointment which I am about 1/2 through.  I can leave it early, but can't stay late!  So I'll likely be somewhere else in anout a year's time, but I have no details.
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I am learning that I can't expect things to move quickly.  I don't want to hop doctors until I get a diagnosis.  I may be better off without any diagnosis since I am starting a job search soon.  But I really want some treatment so that I can work and enjoy life better in the meantime!
Helpful - 0
335728 tn?1331414412
First of all, I would like to know what sort of AD you are on.  I am currently on Elavil (Amitriptyline) and this AD is not generally used as an AD but mostly specifically for nerve pain.  If you are on an AD such as this I don't think you need to worry about other docs just brushing you off as being depressed.

Secondly...I would hope that you will find a Neurologist or MS Specialist that will keep close track of any medications that you are prescribed.  I did learn the hard way that we also have to be somewhat proactive in our own healthcare in order that we are not "over medicated".  You have to ensure that each and every one of your doctor's knows what meds you are on and I find that keeping a card in my wallet with all my meds and dosages and when they were prescribed is very helpful.  I feel that it is also essential that you do not have too many doctors at one time dealing with the same problem.  This will also cause problems when it comes to medications being cross prescribed and the dosages can not be  followed closely enough.  If you go to one dr. and do not like the care that you are receiving, try to move on to the next one and drop the previous one.  I know that I am not the best person to give this advice because it hasn't worked for me as I can't find another dr. but I hope that it will work for you.

You say that you are planning on moving and getting a new dr. in your new place of residence?  Ensure that you get a copy of your "file" from the previous dr. and either take it yourself or have it sent to your new physician.  Your current dr. should have on file that the AD's are being used for nerve pain and that way you won't have to deal with any misunderstandings in the future.

I hope that I have been of some help to you and I am sure that others will add to this and I wish you luck in finding an answer to your questions and you start feeling better!

Lots of Hugs,

Rena
Helpful - 0
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