After 1 year and 11 days I finally got diagnosed!!!

[Gaucho25]

Hello to everyone. Yes, after the onset of a 'space out' feeling that came from nowhere, and eye pain, dizziness, brain fog etc... and after a year of exams, MRIs of head, neck, spine, bloodwork, evoked potentials (ear, visual, etc)...visual field test, optic nerve tomography.etc... I got diagnosed TODAY. As MS got completely ruled out today (no lumbar puncture needed), and thinking I was a case of subclinical MS, as well as Lyme... NO, none of that... none of the crazy hypotheses like lupus, etc.... mine was a case of migraine. Yes... can you belive that???? So if you guys are going through the same horrible limbo path as me... you might want to consider that. Migraines are NOT always headaches...(i didnt know that). you can have occasional headaches but also can suffer from persistent aura, visual disturbances, halos around lights, all sorts of visual things (visual snow included), pins and needles, dizziness, confusion, sense of depersonalization, burning feelings, tired arms and or legs, face pressure, numbness, occasional slurred speech, probloems with concentration, anxiety and panic attacks, and the list goes on.
I am happy to have a diagnosis, finally I can rest in peace... It doesn't mean I do not absolutely hate the symptoms, but at least I know what it is and there are things I can take or do to make things better.
Hope you guys find your diagnosis soon, because I know how horrible it is to be in limbo land not knowing what is wrong.... and guys, when doctors tell u u need to see a psych, please do not stop on your search for a diagnosis...I did go to a psych who told me I had psychological issues...isnt it obvious that if you go to one of them and tell them your roblems they are going to say ''oh, thats the cause..."?.....
Cheers
Gaucho

[Jasper175]

Migraine is not exactly an answer but a name of a condition caused by something...

All those symptoms fall under real conditions such as:
- Cervical Instability
- CSF Leak (intermittent)
- Others that an MRI would clearly see but I won't mention to not cause a stir
- Chiari malformation
- medication tolerance/withdrawal esp Xanax or other Benzo

[SarahL2491]

Yes, it’s frustrating, but for MS you have to have two occurrences separated by time and space!
MS is also a big culprit in migraines!  

[joy_000]

Epstein barr virus panel test.....I would suggest that

[Becks111]

It's incredible reading everybody's experiences here. I've tried to describe my symptoms but the doctors I'm working with do the deer in the headlight blink blink thing and refer me to this doctor in that doctor, to no avail. In the end I have a strict diet , I use a heating pad on my neck, when the muscles are warmed up, the neck relaxes and the symptoms dissipate, the scariest symptom being a disassociative feeling of reality, dizziness brain fog, arms going limp, body feels like it weighs a ton and I weigh 110 lb, a pulling in some of the clavicle muscles sometimes feels like my heart. No one's ever said migraine to me before. The neurologist wanted to prescribe drugs but I'm interested in correcting the problem not masking and feeling my body with toxins or with harmful side effects to other organs.

I've been referred to UCSF which I'm waiting for that referral to go through.

The MRIs showed bulging disc, degenerative disc, spinal stenosis and arthritis in C C4 5
6 and 7. All the other  tests show normal oh, except for an autoimmune marker.

So I just wanted to get in on the conversation, introduce myself and say thank you all for contributing your stories, your Journeys and your success here.

[Becks111]

There's also a forward-leaning curve on my neck, some dental issues that I'm getting taken care of, and longtime digestive issues. I've been advised to do some heavy metal detox, and some other things along the digestive system and toxicity related things, potentially from Candida and the microbiome of the gut.

[supermum_ms]

Hi Becks111, You may not be aware but this discussion is almost 10 years old and 99% of the people who posted in the MS community a decade ago are no longer active, so they are very unlikely to respond to your posts sorry........JJ

[Becks111]

Good to know, thank you! :-)

[Roxanne21]

that sound like all of the things you have - no telling what is  causing it just as you said.   drs in us are trained to test then find the med to solve the symptom not t he problem.  with your back alone, depending on how bad  it is, surgery?  my brother had surgery and is still on that was 10 years ago and then check for fibromyalgia from a rhum doctor for that cu z that mes the pain so muich higher.  causes a lot of symptoms just to complicate things more.  im sorry and wish you well in finding a solution for your problems.  fibromyalgia is diagnosed by a rhum doctor but  no all.  but when they do, it is sure that is what you have also cuz back issues are one of the triggers.  there are tender points which are in specific places which are not the same as other pain and you must find the difference.if that is the case, well.... good luck

[Becks111]

Gaucho25, that is amazing to hear the list of symptoms as it is what happens to me on occasion, almost everything you listed. What do you do for it. IPad X-rays and MRIs on my neck which shows bulging disc comedy generative disc, spinal stenosis, so sometimes the neck pain is intense and the symptoms seem to come on when I'm using my hands, or looking down.

[Becks111]

There are so many typos in that, pardon me!

[leximom18]

Have your problems been solved?  Please let me know. My 18 year old daughter has had many of the symptoms you mentioned. We have seen 14 doctors including Johns Hopkins. They think she is migraine as well, but we haven't found one single thing that alleviates her symptoms to any degree.  At 18, she's living with constant brain fog, says her brain hurts, lack of focus, concentration inability to read or write for any period of time.  She has dizziness. They put her on Topamax and it has helped with the constant spinning she has had since this all began, but she feels off center, light headed and feels like her eyes are going to roll up and she will collapse. That hasn't happened yet.  She is in her senior year in high school and this is a nightmare.  If there are any suggestions you have or where to go next, we would gratefully appreciate it.  Thanks. Hope you are better.

[jopa429]

Does she happen to have a dental implant or any titanium anywhere? LOTS of people describing here symptoms and discovering that titanium implants caused all their problems. There are also many people that have discovered they are allergic to titanium dioxide which apparently is in hundreds of everyday products. I hope you find your answers.

[WylderRose]

Goucho, what did they recommend as treatment? Just courious because I have pretty much all those symptoms. It started 2 years ago with the halos at the outer edge of my vision. Here reciently its been causing my brain to swim like Im about to pass out. Then just as fast as it comes it stops. Dill eye ache maybe left behind, or feeling foggy for a few. Does that sound familiar? Please tell me what they recommended for you. ?

[WylderRose]

Meant Dull eye ache.

[still_here]

I'm finding dairy and wheat affects mine for the worse..

[cyberbav]

Amazing!  when I read the part about arms and legs it made me feel less like I'm imagining things.  Do that have a treatment plan?  I would love to know more about what they say and if it works!

[GOMER2]

WoW that was quick!

I had documented MS Sx going back to 1967! Things got BAD in 1987 and it still took 23 YEARS before I was finally Dx with "long standing RRMS" in 2010!  In my case it WAS Multiple Sclerosis, and everything else ruled out.

[still_here]

What is rrm?

[GOMER2]

RRMS stands for Relapsing, Remitting Multiple Sclerosis

[4happygnomes]

Curious @ GOMER2 if you had any lesions show up on your MRI during the 23 years (yikes!) of limbo?  I'm 4.5 years in of symptoms that mimic MS, abnormal neurological exam, everything else has been ruled out...but no lesions...yet.    thanks!  

[GOMER2]

NO MRIs, nothing, until a new NON-VA doc I saw for something I thought was unrelated, and opened the neurological / MS can-o-worms, in 2009..

In 1987 I was sent to SHRINKS at the VA. They took MY SIDE, not nuts, etc just "adamant that something else was wrong. They refused to do anything. That coupled with a NEW VA Dr, not yet indoctrinated in VA ways, said if I could back up what I told her, she would order a MRI & MS work-up. She kept her word!

The rest is history.

[Mmray213]

Two words: Magnesium Citrate. Take 400 - 600 mg.  a day. Your symptoms will improve. 85% of Americans are now deficient in magnesium. Magnesium relaxes blood vessels. Read the book “Magnesium Miracle”. You’ll be on your way to healing.

[Becks111]

Magnesium for which symptoms?

[GWake23]

Hi, was your dizziness constant? I have migraines and have had constant disequilibrium for the last 3 months.

[herrynikson234]

I was suffering from the Trigeminal neuralgia for five years. This disease had affected my daily living activities and I was under depression. My daughter did everything for me to reduce my suffering. She searched for the natural products on the internet and came across a site where she had a chat with the doctor. The doctor advised my daughter to buy a kit comprising of the natural products and the name of the kit was the Freedom kit with OM 13 formula. She ordered the kit and I am taking the kit for a month and I am feeling much better. Pain has reduced and I have started performing my daily living activities with confidence. Thanks

[CHAIK]

:) Like!   Thanks Gaucho29.  You gave me more enlightenment.  Wish us all the Best !

[ltam123]

So who finally diagnosed it?  What kind of specialist? What did he/she use to come to the diagnosis?

[nailedit45]

Sounds like electro hypersensitivity to me! look it up Doctors don't help much with this they even may say u need a shrink. In Canada and Sweden its well known. You will find lots of books on Amazon about it. They have a support group called EMF Warriors There is a Lawyer fighting in the courts, Washington  Dc and other states am not sure of her  name you will probably run upon it like I did. I am friends with her and lots others on Facebook EMF Warriors you are not along. I have been dealing with it since 2009 GOOD Luck!!!!!!

[1Sweettea]

How are you sure? What is the definitive thing that gives you confirmation? I've had other doctors throw words at me that were incorrect. How is it that you know this is an absolute diagnosis and not just  a title like a placebo to throw out something that they don't know what it is?

[Lunaapril]

Hi sorry to hear could anyone help please no one telling me xxx thank you couple months back my face droped on one side it went num so did my eye mouth and I could not really see   They did a MRI everthing was normal but there still passing me on to see someone higher as my leg started to feel different if feels like it  tighting and let's go but at this point my whole body locks  it drains me  then iv been having more problems pins and needles in feet and toes and fingers and hands when I made my little girl a drink it was like a ghost took it out of my hand things keep slipping everthing feels weak I get a wired tight feeling at the back of my chest  then I keep going dizzy I feel like the room is spinning and my head it to heavey and when it's happening I can't speak I feel like it coming out wrong and slow I tripped over but how when they was nothing to trip over I was eating the other day and it was hard to swolllw my food then it would let me eat again the day after these come and go some part of the days I will be on and then it will  come back on me also head pain and the pain what iv had for 2 months of and on I feel like it's hitting my arms they also got weak any help please ????

[KenS61]

What is your diagnosis? I have had many that were wrong (From Epilepsy, Irritable Bowel, and many Migraine Diagnoses just because the Neurologists were lazy) and would honestly like to help if possible.

[Lunaapril]

Hello sorry only just seen this I don't no yet as I'm waiting for my results could take weeks I feel so week I look week   My body keeps locking my fingers are going stiff do you feel what it sounds like on my MRI scan the other day I seen like a bright white shadow on my spine

[Sparkysarah]

I am so glad for you first that you do not have MS and second that at last you are out of limbo.

One of my best friends recently had a very strange turn that has left her completely debilitated for 8 weeks. It was was a severe migraine ..although symptoms presented as similar to a T.I.A. (mini stroke). Thankfully she is now recovering alhtough still feels as if she is walking on a boat and cannot walk too far.

Anyhow the good news for you is that have a name to your symptoms which makes it easier to deal with. I hope that you get better soon and wish you the best of luck

Sarah  

[JemmAus]

Anyone with these awful "migraines" (or whatever they may be. I too have similar/same as above. Though the jury is still ut on whether it is MS or Migraine or both.

I too am skeptical and also scared of many of the medications the drs prescribe. I was amazed that a leading neuro prescribed a tricyclic antodepressant as a preventer when one of the contraindications was if one has seizures (which i have had) - the drug could increase siezure activity.

Anyway I was reading last week about food triggers. MSG in particular amongst other things. MSG has over 20 other names used to hide it within foods we eat.

Here is one article:

http://www.truthinlabeling.org/presentregulations.html

Other foods that can trigger migraine are onions (switch to leeks and shallots), concentrated tomatoes, like in  sauce, paste etc, hard cheeses, all soy products, and stuff with "hydrolysed vegetable protein".

I'm trying to eliminate these things from my diet completely to see if there is any change....I'll keep you posted.

Bar that, i'm off to yet anotehr neuro next week. maybe i will get some definitive answers for a change , instead of this MAYBE MS, or MAYBE atypical migraine....

[doxieluver88]

I can totally relate with you! I have had dizziness, issues concentrating, lightheadedness,..etc. for exactly one year this month! It helps to see that I'm not the only one with these type of symptoms. Doctors told me it was anxiety and kept telling me to go see a psychologist just like you! However, I eventually got discouraged and stopped going to doctors and never went to see a psychologist b/c I didn't believe it. They even gave me an antidepressant which I couldn't stand and only made things worse.  

Well one day, I happened to take an excedrin migraine...well you probably can guess how great I felt after I took it.  That's when I reconsidered and started keeping a food/trigger journal. Now I take excedrin sometimes when I have a dizziness attack and found that certain foods like cheese, granola, nuts, tension, irritable people, etc. are triggers. (like after eating pizza or a cheese stick snack, about 20-30 min. later dizziness begins or like today there was a 5.9 earthquake and I got all tensed up and my dizzy attack began). However, excedrin is not long lasting at preventing the dizziness and can take a toll on the liver over time, so I am looking into other methods.

My neighbor went to a herbalist for her dizzy issue (non-migraine related) when doctors couldn't figure it out. She said she no longer has dizziness at all after he suggested she take a certain herb. (best of all it only cost her $45 for the visit, unlike a pricey doctor). I am considering going to one. Research shows herbs are effective and I have personally seen natural herbal remedies heal someone in my own family. I didn't used to believe in them. Anyway  I would suggest looking into seeing an herbalist. It wouldn't hurt afterall.

The funny thing is from the very beginning, my mother, who has been a RN for 30 yrs, told me that she thought I was having a type of migraine. However, I kept going to those stupid doctors.If you told the doctors about your migraine hypothesis, they just brushed off or didn't pay attention b/c they were so focused on the anxiety thing. I should have listened to her because she is often right about diagnoses. Everyone is different and will experience different things caused by migraines.

I don't know about you, but for me, migraines are genetic. Every woman/ generation on my one side of the family has history of migraines beginning in early 20s. After talking to my aunts, mother, and grandmother, they all experience different types of migraines, meaning we have many different symptoms.

I'm sorry to hear that they are affecting your functioning in your life. I can totally relate to that "brain fog" thing. Sometimes on bad days I have trouble remembering the simplest things. Has your doctor prescribed you anything for migraines?

[HVAC]

I have both atypical migraines, typical migraines and MS. My migraine symptoms blindness, left side weakness, dizziness go away when my migraine medicine kicks in. My MS symptoms remain.

Alex

[Bee_143]

I have to say to thankyou for sharing this. I get every synpton you described. It started happening when i was 16 when i started college. Strangely before then I had never experienced a headache before:S and was confused by the pain in my head and sudden blurred vision. That was two years ago and i have pretty much been through hell and back, with these migraines. Most people just labelled me as a extreme hypocondriact especially when i attempted to describe all these wierd sypmtons that i didnt even understand myself! Eventually I had to quit college and my job because i couldn't cope. My biggest problems are (or where maybe) the initial migraine pain which i (now experience so frequently it feels permanent) eye pain, visual disturbances and aura (which has also become permanent) kneck and back pain, plus i believe i have been experiencing this "brain fog" which has began to scare me a lot. It has got to the point where i feel like a zombie. Iv seen many doctors but they say they don't have a clue and act like im insane:( This website may be my only hope to fight this. I really need some questions answered. Can you ever get rid of them completely? Did Sibelium work for you in the end? Do you know if your vision ever goes back to normal?

[BNM77]

Wow this sounds like me. I had to stop working because I can’t wven drive and it’s even hard to be a passenger at times. My back and neck and arm hurt so much every day. I’ve been told I have a low pressure headache from low spinal fluid and I’m getting a blood patch done on Monday. I just hope it’s what will help me. I’m so sorry your going through this because I know how you feel where people don’t believe you and you feel like your crazy and alone.

[swathi123]

Thanks a lot for sharing... thanking you 10000000000 times for sharing this.

I too suffering from all the things you mentioned above.

Including them i have eye floaters too. is there any treatment for this kind of migranes ??

Please reply me.

[Donzettak]

Eye floaters are a symptom of Chiari 1 Malformation. If you're interested go to a neurologist with KNOWLDGE regarding Chiari. If you have it, search neurosurgeons that have KNOWLEDGE about Chiari. I say knowledge because in med school there's one paragraph in one text book. And MRI of your lower skull to your C-1 or even further down your spine.
Good luck
I hope you find the answer you're needing answered.

[Erin0313]

Congrats on your dx! It is always such a relief to finally get an answer. Thanks for sharing your news. Maybe someone here like Udkas will find relief by asking and trying migraine meds.

I hope that your treatment takes away your suffering and helps you get back to a normal life.

Erin :)

[Udkas]

Hi there again and thanks for sharing this info, I am tempted to try some migraine tablets and see if it works for my symptoms.

My MRI, LP, Nerve Studies are all NORMAL but 1st neuro diagnosed MS but then when it didn't get worse changed his mind and second neuro has diagnosed Transverse Myelitis and reckons that my migraines are part of the cause of having a wacked nervous system and attributes them to lesions in my brainstem or cervical.

My headaches do make things a lot worse and I get terrible nerve pain and it lasts for weeks and weeks and weeks, like my last bout of tongue numbness and vertigo lasted for about 5 weeks?  So I was never sure if this was headache or TM related.

Keep me posted on how you go on your meds, I have been prescribed some heart med to try for the migraine when my tongue was numb but I never did as I get nervous about taking new drugs.

Take care,
Udkas.