Aa
Aa
A
A
A
Close
280418 tn?1306325910

Guidance, support, theories all welcome.

I have seriously limboed.  I'm currently in a relapse of twitching, burning pain in feet, tingling arms in heat, burning scalp (at the crown).  2.5 years, 2 neuros and a trip to a Johns Hopkins neuro have not relieved my pain or diagnosed my issue.  Tonight, I sat with my feet in lukewarm water for relief.  The sad thing is, I thought I was getting better.  The Johns Hopkins doc gave me false hope.  I sit here feeling very alone in my pain tonight, so I thought I would share my thoughts.  Chronic pain, be it MS or whatever diagnosis, is very serious and very depressing.  I worry about falling into a deep depression and wasting precious time.  I refuse narcotics, but at times the thought of them sounds enticing.  i don't want to take these drugs, but what do I have left?  I have one lesion, neg MRI, neg everything else.  I don't think it can be ruled out, though and I've change my mind about this a hundred times.  To all those in pain or feeling down - I am with ya.  This just stinks.  Sorry for the blah post, but I'm just feeling painfully honest.  No pun intended:)

7 Responses
Sort by: Helpful Oldest Newest
362692 tn?1248639193
Hope

I have lyme and my first test to come back positive for my symptoms was an emg for PN in 3 out of my 4 limbs. You are clinically warrented. You should definately pursue this.  My lab was NOT definitive for lyme by CDC or Johns Hopkins criteria however I pursued treatment and I have regained 90% of my functioning. You should note that on my labs it says that one band is enough to indcate a recent exposure.

I was twitching so bad that ALS was apossible diagnosis for me. This time last year I thought I would have to leave my job and worse yet I didn't think I would be around to spend another Christmas with my kids. This past holiday was best christmas of my whole life.

Please read the Cure Unknown by Pamela Wientraub and please read anything and everything you can about lyme. The more you know the better you will be able to advocate for yourself.  Feel better soon!!

Rebeccah
Helpful - 0
147426 tn?1317265632
Oh, my!!!!!!!!!!!!!!!!!!!!!!!!

Lyme disease is far, far more likely to cause this kind of nerve pain.  It LOVES the peripheral nervous system!!

I will give our friends over on the Lyme forum a head's up.  they will take you in hand.

Please read Wonko's and my responses on this thread:

http://www.medhelp.org/posts/show/766556?post_id=post_4010070

Quix
Helpful - 0
280418 tn?1306325910
I forgot to mention that my neuro happens to practice acupuncture and eastern medicine.  Not a fan of needles, but I will try anything tomorrow!  Good idea...
Helpful - 0
280418 tn?1306325910
Thanks guys for all the support.  I am feeling somewhat better.  I'm going to my neuro tomorrow and I'm going to ask about all those things Quix mentioned.  I did get glucose tolerance testing and it was normal.  The biopsy said "normal density" of nerve fibers but there was segmenting and branching.  

Interesting, just received lab results in the mail.  I tested positive on the Western Blot for Lyme's disease.  It said the result alone does not indicate a diagnosis of such, and the whole clinical pic has to be taken into acct. etc.  I find that interesting, anyway.  Not sure if I should pursue it.

I agree Quix, I don't think anything beyond these parasthesias and one lesion are suggestive of MS.  I just don't seem to belong anywhere else, lol.  Its a great forum to bounce ideas off of and sometimes, when I'm feeling particularly fatigued and hurting, MS creeps back into my thoughts.  I am just one of those people that has to have an answer and it is escaping me all the time.  I almost can't accept the "we don't know" answer to my symptoms.  I might have to, huh.  Well, I will post a quick question re: Lyme's and lab results on that forum and see what everyone thinks.

Thanks all again for the support.  Nobody understands like those who are in your shoes.  It's priceless to have this lifeline!
Helpful - 0
Avatar universal
I'm so sorry you are going through this painful, difficult time.  I'm thinking of you and praying for you.
Helpful - 0
751951 tn?1406632863
Quix is right when she tells you that you're not alone.  This is one thing -- perhaps the only thing -- I can say with certainty.  We will pray that you find the relief you seek.
Helpful - 0
147426 tn?1317265632
I feel so bad that you are in this suffering.  It really sux bigtime to suffer with no end in site and no understanding of what is happening to you, so no real hope of curative treatment.

I have no words of wisdom about your neuropathy.  They documented the small fiber neuropathy at John's Hopkins, didn't they with the abnormal nerve biopsy?  The nerves appear damaged, but not decreased in number?  

When I look over the things I could find, I don't see that your symptoms and findings are suggestive of MS, but maybe you'll remind me what else you have except the paresthesias and pain, the one MRI lesion.

When your liver enzymes were a little elevated you stopped the two meds that might give you the most relief, the gabapentin and the Pamelor, staying on the meds that help you sleep.  This has left you without any good therapy for neuropathic pain.  Traditional pain relievers, including narcotics, are notorious for being ineffective for the type of pain and discomfort you are having.

There are a whole host of meds used for the treatment of nerve pain.  We always talk about Neurontin, Lyrica and sometimes carbamazepine (Tegretol), but many others are used and often used in combination.  Meds like amitriptyline are often used with one of the atypical anticonvulsant meds (like the three above but there are many more) to relieve pain and to aid in sleep.  This includes many of the antidepressants

So, at this point it seems that you need to pursue someone willing to try the more unusual combinations of things used for this kind of pain.  And you need to be taking something for the depression - ideally something that would address your difficulty sleeping.

Narcotics can be useful for many kinds of pain, but this is not one of them.

I hope that this shows you that there are many different meds to try for this pain than the ones you have listed.

Also, there are some alternative and complementary treatments that are used for nerve pain.  Acupuncture is one I would pursue if I had untreated pain.  I know in Europe they are often using a supplement for some kinds of nerve pain.  This is alpha lipoic acid - I think I recall the dose is 600mg per day, but I would have to look it up.

I think you need to seek out a good pain management clinic and see what other options there are.  I would also research what is being done to relieve diabetic small fiber neuropathy.  That is a common type of PN and some of the things that are helping with that disorder might help you.  I presume you have had repeated glucose tolerance tests.  Right?

Maybe you need someone to just tell you you're not alone and you're not.  I'm thinking about you and wishing this wasn't happening.  But, it's my nature to try to think of other things to try.  And never feel bad about saying what you are really feeling.  What a lie this forum would be if we all pretended this was a trip down the garden path.

I wish you hours of relief and more hours of real sleep.

Quix
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease