Absolutely! I have all of that and much more..including burning sensations, severe nerve and muscle pain and much more. My left leg drags sometimes. I am certain they are missing something in both of us and many other people. We have just too much going on for it to be just fibro. Remember, fibro is not a disease. It's a group of symptoms with no known cause. Like me, you probably got this diagnosis because the doctor/doctors don't know and they are too arrogant to admit it. I would seriously look into lyme disease as it causes all of this. This is a possible diagnosis for me as I have had the rash in the past. Even if you tested negative you can still have it. The testing is completely unreliable.
I too have had your symptoms and the same ones patsy10 states. I get very frustrated with this and dr. my rheum says i need to make some lifestyle changes and with med try to get a quality of life that i can live with. hmmm i have been off work since last oct. my med leave is up and had to quit my job and what money i have left will pay for my cobra ins. for awhile having trouble get my dis. insurance from work rhuem not signing papers! i would like to seem him work a day wioth this. i struggle with what i do here and have to pace myself now. i shake alot my hands , legs also times hard to walk, to go to wal mart is so hard and i am exhausted after! some of my twitching decreased after i got off lryica. And they say nothing they can do i want to be fixed so i may go back to work and be normal again! sorry if i sound down having bad day one thing to have these prob. nobody can expalin but to think we can just do lkie we hav e always is not right.
Thanks for your response! Yes, I am going to ask to be tested for Lyme disease.
My legs will drag too - and trips to wal-mart are exhausting for me as well!
Good luck to you too!
Sounds like all 3 of us are in the same boat. Work is very difficult. I stand on my feet all day. It's very exhausting.
Have any of you had any testing for Multiple Sclerosis? I don't want to scare anyone but the symptoms that Julia111 related are pretty similar to those related to MS.
The feeling of warm liquid running down one's leg is call Paresthesia and can be VERY frustrating as it feels almost as though self has lost control of one's bladder!
The numbness and buzzing are characteristic of MS as well and the numbness could also be a symptom.
If you have not heard anything close to the words Multiple Sclerosis come out of your family doctor's mouth...I think you should suggest that you would like to be referred to an MS Specialist!
It wouldn't hurt for you to go to the Multiple Sclerosis forum on this site and explain your symptoms there and see what sort of reactions and advice you can get. They are very helpful and supportive over there and I believe that I may have seen Julia there already!
Do yourself a favor and check it out guys...you can't get hurt by gaining more information...you only empower yourselves to a better life...go for it!
Lots of Hugs,
I've had every test possible for MS, some several times and they are all normal. I even had a spinal tap. I was convinced it was MS. I literally saw 6 neurologists and all said it isn't MS.
Just to let you know that the LP is not the end all of tests for MS either. I would say that you should have also had the evoked response tests which will tell them the reaction certain nerves have to stimulus.
Did you see an MS Specialist? If you had an MS Specialist that was doing his/her job, you would be continually followed up with an MRI as well as in office examinations every 3-6 months on a continuing basis for years if necessary. If any MS Specialist has even the slightest inkling that you may have MS, they will not stop looking. You should have your pcp/gp refer you to an MS Specialist as soon as possible for evoked response testing...it's the foot drop in your case that I would be most concerned about.
Best of Luck,
Yep, I saw an MS specialist. He was neuro #5. This was my worst experience so far. I saw so many neuro's because I am certain this is a neurologically based disease process. I am an RN and I know better than to believe that this is fibromyalgia. Normal, happy people don't suddenly developed all these symptoms overnight for nothing.
I've had evoked potentials, MRI's of the brain x3, MRI's of the C-spine x3, MRI of entire thoracic and lumbar spine, EMG's x2, spinal tap and various lab studies. Everything has come back normal with regards to MS.
The MS specialist did not take me seriously. When I went there I could barely walk in from the parking lot because my legs were so weak. I had a slight limp in my left leg and it dragged slightly. He told me my neuro exam was normal! He was concerned(or acted like he was) about lyme disease as I had the rash and I brought pictures of all my weird rashes. But, when the test came back negative, he said no lyme. He obviously did not know anything about the differential diseases that mimick MS, like lyme disease. He should have known the testing is unreliable. Anyway, my diagnosis was fibro/cfs and "it's all in your head". This is why people end up here on these boards looking for answers, even people like me who work in the medical profession.
I have had the same feeling over the last two / three weeks - like warm water running down my lower left leg. It lasts for a few seconds and happens several times a day. I had to do a double take the first time I felt it!
Not had any of the other symptoms mentioned here, so I consider myself lucky in that regard.
I have hypothyroidism and have found a couple of references to it being a possible cause else where on the net. Off to see the doc later this week so may find out more then.
If any of you here drink diet sodas.... then please consider researching aspartame. My friend's wife had MS symptoms for years and she believed she had MS or fibromyalgia. After her co-worker read an article on aspartame, she stopped drinking diet sodas and her symptoms went away.
Rena, I'm SO sorry I haven't responded sooner - I forgot my password to sign on and then once I had it reset I started having problems with my computer - but I'm happy to be back now!
No, I have not been to a MS specialist.
Basically, my PF ordered an MRI of my Brain W/O contrast when I first presented with numbness. The results were normal.
He then referred me to a local neurologist who didn't perform any physical exam, but ran a couple of blood tests and pretty much dismissed ALL of my symptoms.
I think when I shed some tears of frustration during appt. #2 he felt sorry for me and gave my Lyrica and Provigil to try for Pain and Fatigue.
They helped some, but then symptoms persisted and then worsened, so my PF referred me to Rheumatology at the Mayo Clinic. I thought great! - they'll certainly get to the bottom of this!
(12 years ago at Mayo I was diagnosed w/ Fibromyalgia; Raynaud's; possible mild Lupus)
This time at Mayo, basically they :
- ran the Lupus panel - neg. They say no Lupus.
- totally disregarded the tests and results I had from John's Hopkins in prior years;
positive ANA 1:640; Raynaud's; Chronic Fatigue Syndrome; Possible Mixed Connective Tissue Disorder - saying they cannot deem them reliable.
- abbreviated neuro exam - normal - read my brain MRI films W/O contrast and said Normal.
- ran blood tests for celiac disease since ELISA food allergy test my PF had done by reliable lab came back positive for Wheat & Gluten (among other things) - but Mayo said NO to this to.
- tested for Celiac disease and said it was neg. although other tests my PF had done said I have an allergy to gluten and wheat
- Of course I got the "mother in law" stress speech and the "as you get older" you can't do as much speech
- "rediagnosis" of Fibromyalgia
I brought in a detailed list of symptoms and a timeline - but I think it actually backfired because he just took it from me, glanced at it and talked for the next half hour. I barely could get a word in - the fatigue and brain fog didn't help any. Actually the appointment is really a big blur to me now.
Yes, I do think I have fibromyalgia - and do I have something else along with it? - only time will tell.
After a few months off fromf work (we own our own business so this was not a problem) and a month of prednisone I am doing much better and feel like I am coming out of the "flare-up."
Yes, there are still a lot of testing that can be done - I feel confident that my PF will see this through with me - he is a friend as well.
Thank you so much for your care and concern. I really like "hanging out" on the MS forum as you all are a great group, and I feel there might be some answers there for me.
Thanks again !
Hi Julia...I think you should copy and paste this last post of yours into the MS Forum! There are a lot of people there that are interested in what is happening with you and I think they may be able to guide to you finding a possible diagnosis! What do you have to lose honey and you can meet some great people along the way!
It would be great to see you join our group and this would be a great place to start!
Lots of Hugs,
I have had fibro for 7 1/2 years and have tried all kinds of medicines and herbs and on and on and on. Nothing has really worked for me. I was out of work for almost 3 years because it was so bad. Today I am an active grandmother of an 18 month old. I work a full time job as an insurance csr. I am always on the go and it is because of this wonderful drink that I have been drinking and this vitamin regiment that I am on. No big deal to it at all. And you do not feel like you are taking pain killers and all that other junk they try to shove down your throat thinking that it might make you feel better. It is the most wonderful thing. If anybody at all is interested in finding out about this please email me at ***@****. It would be a rather long conversation on here trying to explain about the drink and vitamins. Just holler at me if you want some information on it.
Oops they will not let you put your email address on here....lol...should have known. f i e l d s @ c o m c a s t. n e t - lets try it this way but of course put it all together.
And I of course messed that up too...one more time
f i e l d s 0 4 2 8 @ c o m c a s t. n e t
Have you ever had any injections into your spinal cord for any reason? Any epidural injections at all, whether for back pain or for pain during childbirth?
just wanted to share i am in the same boat. i have never been diagnosed with fibro and have seen several neurologists, neuro-opthomologist, er doctors etc. have had lots of parathesias (including the water feeling) weakness, fatigue, twitching, spasms, etc. have been diagnosed with recurrent viral encephalopathy, migraine, pseudotumor and others. on a couple of meds for the pain and discomfort but still searching for a diagnosis.
i agree...those with these symptoms should check out the MS board, i used it alot when i was at the beginning of this whole thing and it was very helpful. there are a lot of very experienced people who post there.
good luck. i think i have given up for now, i am just rying to manage my symptoms.
The symptoms you describe are not fibro symptoms. I too felt the doctors had missed something, and just lumped my other symptoms in with fibro, which I DO have. The first of April I had an appt with a MS Neuro. It was the most complete exam I have ever had, and lasted an hour and a half. Thank the Lord I do not have MS, but I bless God for this doctor. I have some spinal cord issues for which further MRI's have been ordered to find out where the problem is. I would recommend your finding a good Neuro that specialises in MS. If it is not MS, then he should be able to point you in the direction you need to go to find a diagnosis. I know how frustrating it is to see dr after dr and get no diagnosis, but it is your life, and you have to take charge of it, and be your own best advocate, and a squeeky wheel. You may have fibro, but that doesn't mean you don't have something else along with it. Good luck and hang in there, you just need to find that "one" dr.
Julia, the symptoms that you list are consistent with a condition called adhesive arachnoiditis. It can come from any type of injury to the spinal cord, but is normally associated with something being injected into it, such as myelographic dye or epidural steroid injections either as a treatment for chronic back pain or to mitigate pain during childbirth.
The problem with adhesive arachnoiditis is that it is difficult to obtain a diagnosis because the condition is usually caused BY doctors, therefore most doctors are loathe to diagnose it because it implicates their comrades. Normally, MRI with contrast is used to obtain a definitive diagnosis, but the symptoms that you list are among the most "popular" ones that are shared by sufferers of this beast of a disease.
Essentially, adhesive arachnoiditis is a doctor-created, incurable, lifelong case of spinal meningitis. The "adhesive" part comes from the fact that the nerves in the spinal cord start to weld themselves to each other, sticking together (or adhering) to each other in clumps. Because of this damage to the nerves, a host of symptoms, including the ones you described, are a daily part of the lives of adhesive arachnoiditis sufferers. At first, it is often misdiagnosed as MS because the symptoms mimic those of MS so closely.
There is no cure, the only thing that can be done is to maintain the patient on pain medication to enable them to have some sort of quality of life. In most cases, the disease is fairly mild, causing constant back pain and sensations, such as the one that you described as warm water going down the leg. However, there are some cases where the scar tissue that builds up in the spine gets to the point where the nerves are so damaged that the person winds up unable to walk, and needing a wheelchair to get around.
If you would like to read more about this, if you Google "adhesive arachnoiditis" it will give you many, MANY links with loads of useful information. I wish you a low pain day.
Thank you all for your comments.
Ghilly - No, I haven't had any injections into my spinal cord, that I know of - I have never experienced childbirth - but, have a beautiful girl we adopted. : )
I'll keep looking for answers. Thanks again!
hey guys ive had some of the same problems as you have had its only just started out and my doc has no clue i will be seein my first neuro in a few weeks and i had a ct scan and havin an mri tomoz totally crappin my pants lol coz the first 1 i had it felt like a stroke and scared me coz i went blind for a moment. i am totally worried about everything. where as julia has the feeling of water down her legs i have it goin up my legs and into my face thats what scares me the most and im only 25 has any1 here had anything like it is or is it me going mad all i want to know
thanks for your help hugs to all x
Just wanted to say that I too experience the symptoms you have, the warm water running down the leg can be really horrible can't it?
There are quite a few neuroligical disorders and other diseases/illnesses that can have these symptoms, maybe you need to go back to your GP and ask to start again with blood tests and a neuro or rhuematoid consult to rule out other conditions, what about Lupus have you been tested for that?
I hope you can get some help soon
great description. i have had a similar sensation, a bit like a section of stocking being taken off my leg. it's not pins and needles. more like this warm light burn running down my skin on my leg. why not in the arms? unfortunately i dont think it's a good thing. i first experienced it almost 3 years ago. it preceded my collapse and fatigue syndrome.
i have long-term anger issues (sigh), and i think they're related. good luck everyone
I have all of the symptoms you mentioned above. Vibrating sensation in feet and legs that has migrated as far as my chest, burning, cold water spots (without the water :) ) and yes the warm water sensation down the inside of the leg. I also have had my right foot go numb for the summer months. One the numbness started to disappear (although never entirely) I realized that the muscles in my lower part of the foot and toes were damaged. I was also concerned about MS among other things. Found out I have a hereditary peripheral neuropathy. I was diagnosed with that last October. In January they also dx me with Fibro. The differential diagnosis for MS is extensive. There are over 100 diseases that mimic MS. It is important that your doctors spend the time ensuring you do not have a coexisting disease with the fibro.