What mimics multiple sclerosis?

[sunsetfl]

I have every symptom of multiple sclerosis and have been told by several doctors I might have it. I went to a MS specialist recently and he said, after a physical examination, he didn't think I had MS but would run the VEP and Spinal Tap just to make sure (MRI of the brain and lumbar were clear). What else can be causing the same symptoms of MS? I can barely walk, after six months of going from doctor to doctor, with no diagnosis and no treatment.  

[sunsetfl]

I am new to this forum and thought I should at least post some of my symptoms. Muscle weakness/pain in all limbs. The pain feels like somone stabbing me with a knife. Tingling, burning sensations in the feet, legs and hands. Tingling in my face and head. Muscle spasms and cramps in the feet, legs, arms, and hands. Dizziness with vertigo at times. I can not look backwards over my shoulder or I lose all sense of my surroundings because they are moving. Nausea and diarhea. Chest pain and shortness of breath. And the latest is hard to describe but I will try. I tried to walk the other day and my right leg collapsed. My fiance had to help me to the car with my right leg dragging behind me. The next day I was unable to walk at all because with every step I tried to take both legs were collapsing. It felt like my legs were jelly and all of my joints were free moving. From feet to hips, I could not control any of my movements. The next day (day 3) I could walk with some assistance with my right leg occasionally giving out and collapsing. Lately I have also developed lumps in or around my joints and in my leg muscles. The lumps in my leg muscles feel like the muscle is balling up and won't relax. And finally, my left hand, which has been almost completely numb for more than 3 months is starting to ball up and I can not always make the fingers straigten out. Any help would be appreciated since I am now going out of state to try to find answers.

[Curly4068]

Do you live in an area that has deer tics.  I have seen Lyme disease do this quite often.

[SarahL2491]

Yes, definitely have your doctor check for Lyme disease just if it’s only to rule it out.

[Brookeable80]

Lupus mimics all of his! get an ANA test done Stat! feel better!@

[India63]

I was diagnosed with progressive relapsing MS. A rare type. Only about 5% of people are diagnosed with this type in the very beginning.
You say you have every symptom of MS. what do you mean?
What are your symptoms. MS can have many and different symptoms.

[DANIELHARMON]

LYME DISEASE

[India63]

Excuse me  I thought your second post was someone else giving you an answer.;0

It seems you have a lot of different things going on. Only a few could be related to MS.
If you have no lesions in your brain and/or no protein in your pinal fluid than you probably don't have MS.

Doctors can be funny at times. If you give them so many symptoms they tend to dismiss a patient as being someone who only imagine they re ill.

You should only mention the symptoms that relate to the doctor's field or at least give them only your major symptoms

[SarahL2491]

Now, first you have to ignore dr google.
I had a negative spinal and 3 neurologist and 3 radiologist and 2 mri’s all told me I either had fibromyalgia or Alzheimer’s.
I went to a 4th neuro who specializes in only MS, have him my timeline (very important) and my mri disk.
He spent over an hour with me, he did physical tests I hadn’t heard of and I’m an RN.  He couldn’t do any more mri because in the meantime, I had a pacemaker implant.  He pointed out every lesion he found!  For 7 years I have faithfully driven almost 500 miles one way twice a year to see this neuro.  My last visit, we concluded I had had MS since childhood, which slid many unanswered questions into place!  I think I’m on the edge of SPMS but we don’t mention it yet.  I’ve had 4 years of Tysabri (+ for JC virus from the beginning),  and 2 years of Lemtrada.
Now my symptoms are showing up on my opposite side and my relapses are slowing down.
When you announce that you have had as many symptoms as you state, you will totally spiral them out, because they have to
Look at them all individually.
You can’t have that many different symptoms in a short period of time.
Start a list, date each different problem, and how long it lasted.  This is a time line.  It’s like a road map to a neuro.  They can then weed out the ones they are not concerned with.  Keep a copy of all mri, ct, and labs and dr reports.
I don’t wish MS on anyone and actually hope you don’t have it.  It’s not something you go looking for!

[SonnyDawn]

I think that I overwhelmed my PC! He told me to mark all of the areas of pain on a drawing of a body and when I was done, it was covered! Haha

[sunsetfl]

I have not had a lumbar puncture yet. I've had to go out of state to see a Neurologist because the first one I saw here in my city did not run anything but a nerve test on one leg and then diagnosed me as stressed out. He wouldn't even listen to my sypmtoms but could clearly see that I was incapable of walking normally. Anyway, I went for a second opinion. The 2nd Neurologist was very compassionate and said he would get to the bottom of my problem. That was until he read the report from the first neurologist and then he decided I was stressed out also without anything but a EMG. (this doctor said he was going to do a lumbar puncture but changed his mind) I believe the 2nd doctor was defending the 1st doctor and did not want to step on his toes. I don't care whose toes get stepped on, I just want to walk again. I tried only giving a few symptoms but every doctor (except the 1st neurologist) I saw wanted a complete list. I then went to a very good Neurosurgeon I had seen in the past and he believed me and was very compassionate and tried to get me some help but even a doctor he recommended said, "I don't do third opinions". The Neurosurgeon was beside himself and kept apologizing for the way I was being treated. My story goes on and on and doctor after doctor keeps dismissing me. I don't understand why they don't want to help. I've seen 2 Rheumatologists, 3 Neurologists, Neurosurgeon, my General Practice Doctor, and had a psychological exam showing I was NOT depressed (this was another thing they kept diagnosing me with). I've been given meds that make me pass out, meds that make the pain in my legs twice as bad, and meds that make me so loopy I can't speak or move all day long. Needless to say, I don't take any meds now. Oh, I forgot, my GP recommended me to a rehab hospital and they won't accept me???? I feel like my body is dying and I keep searching for answers anyplace I can find them. Thanks for listening.

[Jolyn101]

I know this is an old post, but if anyone's coming across it , looking for answers, I know two people who had connective tissue disorders that impacted their mobility.  One has Ehlers Danlos Synd (EDS) - Hypermobility type. I would think that bone issues in ones limbs would also effect walking. Epstein Bar?

[Boston_61]

Possibly Dysautonomia. Diagnosed by a tilt test which is a noninvasive procedure.

[Marsh2001]

Dear sunsetfl,

Please seek treatment at a reknown University (teaching) hospital.  Many private physicians are not willing to take the time to deal with patients whoose condition requires a great deal of their time.  I am not familiar with those in Florida so I will suggest some in my area of residency. Call your neurosurgeon's office, he can probably suggest one.  

Duke University-Durham, NC
University of VA-Charlottesville, VA
Johhns Hopkins Hospital

Many neurological diseases have many of he same symptoms.  Below, are two medical websites on which you can find information regarding neurological conditions.  The Wheeless site is run by Duke University and while it is called an orthopaedic site, it adresses neurological conditions quite extensively.  There is a search block at the top of their page.  The Ninds site is the National Institutes of Health.  They consist of several thousand of the most elite physicians and researchers, therapist etc.
You can also access the web site for the National MS society.  They have a considerable amount of information and your area MS society may be able to give you a list of neurologist.

www.ninds.nih.gov
www.wheelessonline.com
www.nationalmssociety.org

Don't give up!  Sometimes it takes a while and it may be frustrating, but DON'T GIVE UP ON GETTING BETTER, until you get a definitive answer.

[Epiphany_mm]

A lot of your symptoms sound like you have had a neck injury of some sort.  You might ask to get a MRI of your Neck!!

Seriously, if you have pinched nerves or ruptured discs in your neck you will have some of the same symptoms.  The swollen joints sound like arthritis of some sort.  

I'll tell you, Dr's don't really know much.  You have to take your health into your own hands... SERIOUSLY....YOU are responsible NOT the Dr's.   They are all just practicing.. making their best guess..  so, if what they say doesn't feel right, keep questing after the answers till you feel it is right.  Most Dr's  act like they are GODS.. but hey.. they're not..  the more they act like that the more insecure and afraid they are. Don't forget that. And watch out for those types.    

Dr's will order all kinds of tests.. mostly because they don't know what they are doing, and it brings in money.. so always ask why they are ordering the tests and what it serves.  

Sometimes tests are totally necessary, but most of them are just to pull in more money.  It is sickening how our whole medical system has turned into just a money making hand over fist McDonalds like business.  

I wish you luck and healing.   The Best thing you can do for yourself is to have a positive attitude and to call healing to you.  If you'll notice, when you get depressed about your health, you feel worse, and your symptoms get worse.   Be well my dear.. heal.

Wishing and hoping for you, all the best,

Michelle

[sunsetfl]

Thank you. I already had a MRI of my neck because in 2003 I had a two level dysectomy/fusion of the C5-6, C6-7. The neurosurgeon said my surgery is still doing fine and the neck is not causing these issues. I've also been tested for Rheumatoid Arthritis and Lupus. I'm told I am clear of these. Thank for the positive note. I appreciate it.

[nesbitt929]

Of someone sees this post,the Neuro that did your neck surgery may not tell you he messed up your neck.I say this because I have many of your symptoms and recently found out that my neck has pinched nerve training ok top to bottom.My Dr's say that is the cause of most of my problems.After that I did research and found they are right.

[sunsetfl]

Thank you for the information. I am actually in Kansas. Sorry the nickname is deceiving. I appreciate the information and I will do some checking. Thanks again.

[sunsetfl]

Ohhh just read what I wrote and that sounds bad. I didn't mean I am deceiving people with the nickname, it's just that I miss Florida and I can't wait to get back and see the sunset. That is the reason for the nickname.

[Marsh2001]

Your most recent response gave me a chuckle.  You are very considerate.  Rest assured, your 1st reply does not sound at all deceptive.  Please keep us informed!

[sunsetfl]

Hello. In response to you asking me to keep you informed, I got the results of my lumbar puncture this week. My results were abnormal indicative of MS. To confirm diagnosis, my doctor is having me retake the MRI of my brain and c-spine, an OCT test, and a SSEP test. He wants two negative tests to confirm diagnosis of MS. I am just glad I finally found a doctor that believes me and ran the tests for a diagnosis. I am not happy, of course, to get the diagnosis but at least now I can move on and start treatment before my symptoms get out of control. It is also a relief after having two other neurologists tell me I was "stressed out" or "it is all in my head". So, off to Missouri next week to have the other three tests run to confirm diagnosis.  

[Tovalady]

Have you been tested for tick borne illnesses?
Check on this also!

[thelostoriginal]

who is your doctor in missouri im in arkansas moved here two years ago from california and still no treatment just get passed from doctor to doctor. thanks

[sunsetfl]

He is with Blue Springs Neurology in Blue Springs, MO.--Dr. Avasarala. He does a lot of research with MS. That is why I picked him and travel to see him. He is great.

[BiancaItalia]

Try also getting tested for Lyme disease which can mimic ME. If undetected it may turn into ME or other diseases. Please get some good tests done for LYME DISEASE!!  I HAVE HAD IT IT'S A NIGHTMARE IF IT GOES UNDIAGNOSED FOR LONG.  THERE ARE A COUPLE OF TEST TO TAKE. LOOK IT UP ONE BETTER THEN THE OTHER IT'S A WESTETN DIMETJING OR OTHER. I CAN'T REMEMBER... HURRY GET TESTED!!

[RawFoodLife]

I went through similar issue my self; did my own research and became my own doctor. my neurological issues came from heavy metal toxicity which is everywhere: water, air pollution, food, meds, dental mercury fillings ..so I started taking chlorella and spirulina to detox my body from heavy metals, got my old dental mercury fillings removed and taking cannabis cbd oil which is medicinal only and does not give you high and is organic and cold pressed. also supplenting myself with daily minerals and eating 90% raw food, gave up meat, dairy, bread. I recovered and extra bonus from eating raw lost 40 lb. in 1.5 month.

[GGBrewer]

What symptoms did you have and have they gone away since you detoxed?

[Itsreal222]

What do you mean by raw food?

[Itsreal222]

There's a huge list of diseases that can mimic MS, I would see a specialist at a university. Possibly a neuromuscular specialist.

[Charlie28poloneks]

Aspartame . Cut out artificial sweeteners . Lot of controversy about it but I cut it out years ago . I also think generally processed food contributes to a lot of modern day disorders but that’s my opinion . Research it . Good luck

[gymkrider]

Look at the numerous ataxias. Some are genetic. Others are not.

For me, it was gluten ataxia. Went on a ketogenic diet incidentally and had nearly full remission of my MS like symptoms that sound a lot like yours. That helped the neuro figure mine out and I am on a strict gluten free diet now. My doctor and neuro thought it was MS before that, but I had a normal lumbar puncture and clean MRIs.

Gluten ataxia is estimated to be the root of 40% of those with unexplained intermittent ataxia symptoms.

Before you stop eating gluten, please take the necessary blood work. Get tested with antigliadin antibodies, endomysium and transglutaminase antibodies. If any of these are positive then you are sensitive to gluten. Again, the these tests need to be done whilst you are consuming gluten. Ask your neuro to do the blood work before going gluten free. You can get a clear diagnosis with these. It’s hard to start repoisoning yourself if gluten is the culprit after going gluten free.

If gluten is the problem, I believe the ketogenic diet helps heal the brain faster than straight gluten free. But that’s not proven.

I also take Vitamin C and E daily, as these help with certain ataxias.

Other MS mimic is Syogrens. My neuro also has tested for that in his workup.

Good luck.

[gymkrider]

Also Wilson’s disease. (Copper) I was tested for that.

Basically there’s a ton of possibilities. Finding a good neuro or ataxia clinic is the secret. Keep looking. It isn’t just in your head.

Well, it is — but you know what I mean. It isn’t just anxiety.

[Petunia58]

I had the same symptoms in February, 2002.  In May, 2002 after every test known to man, I was finally diagnosed with Meniere’s.

[Imayneedb12]

I had exactly the same issue. Told me it was ms. It was b12 deficiency. It mimics ms. Get your b12 test. Its important to get b12 shoots asasp.   Your symptoms can be reversed, if done fast.

[Emizle]

Have you had your cerebral spinal fluid measured? If so was it higher than 15?

[Suezyq53]

I had the same things happening and had a negative spinal tap. My main symptom was losing the use of my legs and general feeling of not being well. Looking at ms symptoms we all thought I had it. The neurologist who did the spinal tap gave me the news that it wasn’t MS and said he didn’t know what was wrong with me and said come back in a few months if you’re not getting better. Oh, he did order a x-ray of my neck and I was furious that day because I had no answers and he didn’t seem to really care. I had to call for the results of the x-ray that said I had some degenerative changes and that was all. A few months later not feeling any better I found an MS specialist. He was great, he examined me neurologically and said something is very wrong but it is not MS.  He sent me for an MRI of my neck and that is where the problem was. I was sent to a neurosurgeon and since then I have had three neck surgeries. The problem I had that was mimicking MS was degenerative disc disease in my cervical spine. I hope you find someone who will get to the bottom of your problem. Blessings

[HibaF]

Hi what were you symptoms?

[specialmom]

Hi HibaF.  Welcome.  Are you having similar problems?

[Poquitopie]

I would ask the neurologist about Myotonic Syndrome. This goes by other names. One is Myotonia Dystrophy.

[Dinaawad]

Fibromyalgia

[Katadidas32001]

I would find an LLMD and see if you can get properly tested for Lyme disease. I'm in the same boat, unfortunately. Daily migraines, dizziness, random twitching, hand tremors, brain fog, confusion, and so many other brain and nerve problems to count. I would start there. MS and Lyme have same symptoms but Lyme is hard to detect on an MRI if the Dr isn't looking at the specific things an LLMD would. Also, I've cut out gluten and sugar and it's helped a lot. I have good days and bad days, more bad than good anymore  but it's worth a shot. Find an LLMD.

[explodingminds1]

Look at your environment. I used to have tremors seizures convulsion. numbness headaches twitches.  I found out that there had been a chromium shop near by and that chromium got into our drinking water.  Also, check your carbon monoxide levels in your house.  Do you live near any military bases. Are other neighbors experimenting similar health issues.  Sometimes it could b e  something like that.

[explodingminds1]

As soon as I moved out of Riverside, it all went away.