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Old 01-27-2008, 10:46 AM   #1
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Unhappy DESPERATELY seeking ideas on neuro type symptoms!

Hello!

I posted here quite a while ago (a year maybe?), listing a few symptoms I was having, and looking for ideas as to what could cause it. Well I'm back, with pretty much my full list now, and still looking for ideas!

To date, my symptoms have included (not in any particular order, because that’s too much for my poor brain to handle):

*Electric shock sensations body-wide
*Vertigo spells
*Sore spot on scalp
*Muscle twitches in legs (fasciculations)
*Movement Hesitancy-arms
*Sudden jerks in the legs, ankles and wrists (and once in the neck)
*Clumsiness (dropping things, trouble picking things up)
*Neck pain (like a kink in the neck but lasting weeks or even months)
*Stiff left calf muscle
*Numb left side of my throat and mouth
*Muscle spasms (mild to moderate) in legs, arches of feet, stomach, back and neck
*Stabbing pain through the eyes
*Inability to swallow solid foods for 1 month, and throat intermittent throat discomfort since.
*Migraines
*Colon infection
*Numb hands when waking up
* Plantar fasciitis (??)
*Weakness in hands and arms

To date the tests I have had and their corresponding results are:

Various blood tests (all normal, except the elevated lymphocytes and liver enzymes)
CT scan of brain and c-spine (normal)
Barium Swallow (showed possible esophageal web)
Gastroscope (completely normal, despite results from the barium swallow)
MRI of brain and c-spine (clear, I’m told)
Psychological Evaluation (basically ok, although I may be suffering from mild depression, medication not required)


My PCP thought MS, but the clear MRI nullified that to her. My Neurologist said he thinks Chronic Fatigue Syndrome, but my PCP and I disagree since I am not having some of the "hallmark" symptoms, and another PCP I saw when I couldn't get in to see my reg doc says MS. He thinks it will just take time for the lesions to show up (he had another patient like me who took 20 years for lesions to show up).

I'm at my wit's end here. I've been struggling over 2 years, slowly getting worse. All of this started a month after my youngest child was born with a weird little shock-like feeling in my left calf, from there I have progressed to where I am now.

Does anyone have ANY ideas? ANYONE??? PLEASE??? I feel like I'm going nuts here!

Christine

 
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Old 01-28-2008, 01:21 PM   #2
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dream77 HB User
Re: DESPERATELY seeking ideas on neuro type symptoms!

Please hang in there..
I did some research online and the MS makes sense for me too and may explain why all the doctors cannot give a definitive answer, that's because the lesions have not yet appeared.
MS seems to explain my problems as well as well as the suddenness of appearance.
I don't have an option but to wait and make the most of life and enjoy my 14 month old while I can. I cannot control the course of this disease but have to give it up to a higher power.

 
Old 01-28-2008, 05:51 PM   #3
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Re: DESPERATELY seeking ideas on neuro type symptoms!

Hi Christine,

I am having some similar symptoms. No confirmation yet but one of my doctor's thinks I may have a "Chiari Malformation". You've probably heard this before but I just thought I would mention it. It is a malformation of the cerebellum that can cause a host of issues - some similar to yours. My issue has been vertigo - it started 5 months ago - originally doctors thought positional vertigo, but the specialists say "no". Anyway, if you are interested in finding out more, there is a place called the "Chiari Institute" in Long island NY - they have great, informative videos. Hope this helps. Good luck
Virginia

 
Old 04-12-2008, 04:10 PM   #4
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Re: DESPERATELY seeking ideas on neuro type symptoms!

ELEVATED LYPHNODES!!!!!!!!!!!!!!!!!!!!!!!!!!

thats a key!!! dr. act like its not that big of a deal bc severe problems bc of it is rare..but damn!!! It can make problems just like urs..i was watching the show Mystery Diagnosis..and a man had most of ur symptoms..his lymphones were inflamed and swollen and cause calcification in his chest..they thought it was a tumor..turned out to be a huge calcified mass...IT..was the reason for ALL his symtoms!! in the human body there are many things going on at one in specific area..like..the asphagus and a central nervous cord/tenden..is literally beside one another..then the heart beside it...so..he was having eating problems a severe chest problems(pain,heaviness,,pressure..bc it was pushing againt the side of the heart..) and numbness..pain and spasms and hesitantness in his hands and arms..and trouble breathing as the mass was pushing on one of his lungs..if 'we' go to a dr..and tell them that..they dont usually put all these together..they will end up saying..oh u have a bad heart..u have carpel tunnel...tendenitis..and heartburn..lolol..so..this man this happened to..had this calcified mass smack in the middle of his chest...it was pushing on his cord that is a huge part of the central nervous system..hence those problems..it was ALL bc of this mass that was there that was caused by his elevated lyphnodes..ive heard of many other conditions with a bunch of weird symptoms bc of lymphnodes..hope this helps...demand more body scans!! get ur eyes checked again too..

 
Old 04-13-2008, 01:33 AM   #5
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Re: DESPERATELY seeking ideas on neuro type symptoms!

Quote:
Originally Posted by Stormangel28 View Post
Hello!

I posted here quite a while ago (a year maybe?), listing a few symptoms I was having, and looking for ideas as to what could cause it. Well I'm back, with pretty much my full list now, and still looking for ideas!

To date, my symptoms have included (not in any particular order, because thats too much for my poor brain to handle):

*Electric shock sensations body-wide
*Vertigo spells
*Sore spot on scalp
*Muscle twitches in legs (fasciculations)
*Movement Hesitancy-arms
*Sudden jerks in the legs, ankles and wrists (and once in the neck)
*Clumsiness (dropping things, trouble picking things up)
*Neck pain (like a kink in the neck but lasting weeks or even months)
*Stiff left calf muscle
*Numb left side of my throat and mouth
*Muscle spasms (mild to moderate) in legs, arches of feet, stomach, back and neck
*Stabbing pain through the eyes
*Inability to swallow solid foods for 1 month, and throat intermittent throat discomfort since.
*Migraines
*Colon infection
*Numb hands when waking up
* Plantar fasciitis (??)
*Weakness in hands and arms

To date the tests I have had and their corresponding results are:

Various blood tests (all normal, except the elevated lymphocytes and liver enzymes)
CT scan of brain and c-spine (normal)
Barium Swallow (showed possible esophageal web)
Gastroscope (completely normal, despite results from the barium swallow)
MRI of brain and c-spine (clear, Im told)
Psychological Evaluation (basically ok, although I may be suffering from mild depression, medication not required)


My PCP thought MS, but the clear MRI nullified that to her. My Neurologist said he thinks Chronic Fatigue Syndrome, but my PCP and I disagree since I am not having some of the "hallmark" symptoms, and another PCP I saw when I couldn't get in to see my reg doc says MS. He thinks it will just take time for the lesions to show up (he had another patient like me who took 20 years for lesions to show up).

I'm at my wit's end here. I've been struggling over 2 years, slowly getting worse. All of this started a month after my youngest child was born with a weird little shock-like feeling in my left calf, from there I have progressed to where I am now.

Does anyone have ANY ideas? ANYONE??? PLEASE??? I feel like I'm going nuts here!

Christine
Hi there Christine-
i feel for you.... I have the same kind of thing going on- its like a little evil elf is playing games all around my body- making twitches and tingles and weakness and headaches etc etc....i haven't had my MRI yet and kinda don't want to as i am convinced there will be MASSES of lesions... and what do they do anyway if they do find them?? I asked my GP and Neurologist if i could try some steroids to see if my symptoms lessened... they said no- apparently you have to be so bad you can't function hardly at all before you'll get some treatment- here anyway. I feel like my nerves are being damaged irrepairably ( sorry about spelling) and no-one can help!
it is surely a good thing that your MRI was clear- i would be very relieved but of course frustrated!! what the hell is it?
all we want to do is enjoy and be there for our children..like anyone else. DOn't need all this stuff going on!!!! best wishes to you...wish i could help- its so hard..but keep in touch

 
Old 04-15-2008, 06:04 AM   #6
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Re: DESPERATELY seeking ideas on neuro type symptoms!

i just read your post and it sounded so similar to the story i am starting to hear alot that i had to reply. symptoms very similarly happened to my husband several years ago and they also thought it was ms, but mri ruled that out, we knew somehting was wrong, but it was so wierd. some docs knew there was something neurologically wrong, others said he was just nuts and also sent him for psych tests. we finally figured out the answer ourselves, as the test for this disease is inaccurate and doctors dont seem to realize the diagnosis is based on symptoms (not lab tests) the test can confirm but not deny. it was lyme disease. you may blow this off, but my husband got so bad he has permanent damage. just wanted to let you know. and if you do want to follow up on this suggestion you need to find a lyme doctor, (not a infectious disease doc, they will dismiss the diagnosis before you even walk in the door) and you will need to learn to become your own advocate, check the symptom list and if you have many of the symptoms, follow up! you will not believe the way this disease is treated in the medical community. just dont give up! so, good luck!

 
Old 04-15-2008, 06:07 AM   #7
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Re: DESPERATELY seeking ideas on neuro type symptoms!

i also just wanted to say that lyme is OFTEN misdiagnosed as MS and chronic fatigue.

 
Old 04-19-2008, 02:34 AM   #8
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mary63 HB Usermary63 HB User
Re: DESPERATELY seeking ideas on neuro type symptoms!

I don't suppose lyme disease lurks around this side of the world....

 
Old 04-20-2008, 07:49 AM   #9
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Re: DESPERATELY seeking ideas on neuro type symptoms!

Hi, Christine. Just curious -- was your brain and c-spine MRI done with contrast or just without? The shock feeling you're experiencing could be L'Hermitte's sign, which is usually indicative of a lesion in the c-spine. Your PCP is absolutely right re: MS lesions often taking a long time to show up. Also, when you were experiencing pain in your eye, did you also notice any other visual disturbances like blurred vision, etc.?

I haven't been to this board for a long time but do pop in occasionally. (I have MS .) I'm responding to your post because your sx do sound very suspicious for MS. That said, it doesn't mean it IS MS. As dori said, Lyme can mimic MS and so can other things.

 
Old 04-20-2008, 11:26 PM   #10
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Re: DESPERATELY seeking ideas on neuro type symptoms!

Hi Beary, and all

Thanks for taking the time to respond.

Beary- The MRI was only done without contrast. However, I have looked into L'hermittes sign, and my shocks don't seem to have any (as far as I can tell) correspondance with neck position or flexion. They shocks actually started off only being in my left calf. From there they sort of, over time, spread out. Now they are just 1 here, and 1 there. The neurontin has helped to keep them in check now that I'm sticking to it (I hate being on meds of any sort, so I was off and on it for over 2 years), with only minimal "breakthrough" shocks (this is recent, and has me wondering if my dosage of Neurontin needs to be upped, I'll keep an eye on it for a bit). We have currently taken a "wait and see" approach, with my symptoms, since we don't seem to be able to find any answers. A second opinion, with a supposedly MS literate doctor left me with a terribly bad taste in my mouth, so this is (for the most part) an ok plan of action for me, at least for now. Also, the pain in my eye, I didn't happen to notice any vision issues, mind you, I had my eye closed to reduce the pain. The eye pain is pretty short lived, happening for a period of a few hours, each day for a few days, then it goes away. I just wonder if maybe it's some basic nerve pain? I dunno, not my call, but thinking about it, I don't think it's happened again since I started sticking to the neurontin (not positive about that though, sorry). A regular optomotrist did an exam in July, and didn't find any problems (this is an ongoing, but intermittent problem). Recently however, in the last few weeks or maybe a month, I now get a pinpoint of bright light, just above the "central vision", that's just there for a split second, then gone. This happens several times a day now, it started out as once a day. I should probably get that checked eh? LOL Yeah, I'm a bit blah about going to the doctor!

As for Lyme, I'm not qualified to rule it out, but my chances of having Lyme would be pretty slim. When I first started with my symptoms, I lived in a low risk area, and I have never been an "outdoorsy" type girl, even my cats were strictly indoors. Heck I've never even SEEN a tick in my life.

I'm certainly not here trying to rule out other causes of my symptoms, I'd just like an answer, whatever it may be. I'm not obsessed with any particular illness, just looking for some accurate answers is all.

Thanks so much for all the input.

Christine

 
Old 04-21-2008, 06:02 AM   #11
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Re: DESPERATELY seeking ideas on neuro type symptoms!

Christine, sorry for your frustration. Unfortunately, yours is a story I've seen many times. One of the problems with dxing MS is that when someone experiences a symptom, it might not be in a textbook way. I would guess that not all patients experience L'Hermittes the same way. I've occassionally gotten some shock feeling myself without my neck being down and my c-spine is clear. I do think of it as a momentary neurological glitch without putting a name to it but who knows.

An optometrist is not an MD (at least in the U.S.) so at the very least, you should see an ophthalmologist. And, the best type of doctor to see for any neurological condition of the eye is a neuro-ophthalmologist. If you see a good ophthalmologist first, they should know if a referral is warranted.

I wish you good luck and that they find the answer to your problem soon!

Last edited by Bearygood; 04-21-2008 at 06:03 AM.

 
Old 05-03-2008, 07:17 PM   #12
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Re: DESPERATELY seeking ideas on neuro type symptoms!

I am trying to figure out what is going on with me. I finally get into see the neurologist this Wednesday. It has taken me 2 months to get into see the doc. I can't wait to see what the heck is going on with me. But there are so many things it could be. Like MS of lyme disease, pinched nerve, stress, I just don't know. But I am so scared. Here are my symptoms. They started last summer so it is coming up on a year.

Muscle twitches (randomly all over my body, arms, legs, stomach, back, sometimes in the face or eye lid)
Tired sometimes (But who isn't?)
pin *****ly sensations in fingertips, toes, back of neck and rhomboids (shoulder blades) could be found throughout the body. They come and go. Could be weeks inbetween
IBS (Lactose intolerant- bowel trouble at times)
feet fall asleep easy if I am in the same position for too long
Insomnia
Anxiety (MAJORLY!)
Dizzy or light headed on and off
I have alot of allergies to green things outside, dust mites mold and foods
Muscles seem to tire more easily or twitch after a workout, I swim and do the treadmill a couple miles several days a week

Basically I feel like crap alot people! And not knowing what all this is stresses me out and I can't sleep and it makes matter worse.

The other background about me so you get the whole picture, I am 43 and going through perimenopause ( but I didn't think these were the symptoms) I am severly stressed with my bills and fearful of losing my house, I am hypothroid (It is undercontrol though) I have been low on calcium and vitamin D but the calcium is at the right level now but not sure about the vitamin D.

I don't think I have been bitten by a tick that I know of that would cause the lyme disease. But who knows. I am just getting sick of all these twitches and tingles and random pin *****s. I tried one day on a anti depressant and that made me feel terriable so I threw those away. Any ideas?? I know you can't diagnose but does anyone have these symptoms?
Thanks so much!

Last edited by TEdds83; 05-03-2008 at 07:41 PM.

 
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