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Avatar universal

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

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
33 Responses
Avatar universal
Wow. Thanks for the post. I am sorry you went through so much!!
3 Comments
I had all those symptoms and more for almost 8 years finally diagnosed with POTS.....Postural orthostatic tachycardia syndrome
Same symptoms, diagnosed with POTS also.
Hello. I’ve recently found out migraines can and usually are caused by a subluxation of the atlas vertebrae. It is apparently when the top vertebrae under your skull are out of place. Which puts pressure on your brain stem causing migraines tmj facial numbness and a host of other symptoms.  One more step and you are home free.  Try looking into atlas orthogonal or nucca.  Good luck. !  
Avatar universal
Hi there,
Thanks for sharing this info, I am glad that you have your answers and it's not MS.

Migraine Aura can cause many symptoms and you don't always get the headache and there are many different types of migraine aura too.

You can experience like you said burning sensations, numbness, weakness, tongue numbness, stroke like feeling, brain fog, slurring of speech, pins and needles, visual disturbances, pressure behind the eye, even blindness.

Who would think a thing like a simple headache could do all this.

I am curious how are they managing your migraines?  What do they attribute your migraines too? And what type of migraine are they saying that you have?

I get symptoms all the time when I get migraine, but my headache pain is always mild not requiring tablets but you can get aura without the headache.  I notice the shimmering of my eyes then I get the nerve pain etc. etc. and I now wonder sometimes if all my problems are migraine but in my case my neurologist has said no it is not migraine but the migraine makes my symptoms worse.. just like having a fever or illness etc.

I am sort of in limbo so I do kinda wonder but I give a very abnormal examination with apparently very strong evidence to spinal cord lesions, and my neuro says TM but I do get migraine and I do sometimes wonder about it... for me migraine just complicates the isssues.

I am so pleased that you have a diagnosis..

Cheers,
Udkas.
4 Comments
I begain taking aspirin (baby) itg could be caused by swelling in the brain which is due to swelling but it is hard to pick up on an MRI unless it is of a significant amount.  Cymbalta and a seizure med which also is nerve pain relief, and steroids which might be the steroids that helped the most.  I am free of mirgrains
I, at the time, was too painful to wait for a real solution or knowjing what caused it.  once you found which meds work then find out what else it is used which may not make sense cuz it may be labeled for something totally different but you can look for the other uses then dig in that area.  least it give you areas to look at.  it may not be the right doctor to give you the right answers but hopefully you will get it soon enough but just remember all the symptoms and keep trying to find out what it is.  something serious may be the reason
Great information.  Appreciate it.
Possible atlas vertebrae out of alignment. Find a nucca or atlas orthogonal Dr. a very specific upper cervical Dr. they will X-ray you to see if your vertebrae is misaligned. It can cause all the issues you are plagued with.   I have all the symptoms the above post has.  And when I went to a nucca. They xrayed me showing that my atlas was out of alignment.   So I’ve been revived g treatment. And it has been working.
410281 tn?1254229064
I recently posted that I refuse to accept the headache dx....Interesting that you would get this dx now. I have not been dx with migraine, just chronic daily headache, which has since subsided (thank goodness). I tried many many many things for the headaches, none of which worked. I hope they can give you something that works for you!

Feel Better,
Heather
2 Comments
+*----+
I must have said something right because I was diagnosed.  was tested for ms and migrains.  given pain meds and they were very experience and insurance did not cover.l   symbalta, steroids, seizure/nerve pain meds cleard it u and I take baby asprin.  reduc es swelling.  I just told her I have a headache most of the month.  I was the right age I ruess.  so lucky.  most difficult thing to have
751951 tn?1406632863
Docs have been trying to tell me that what I am experiencing is an unusual form of migraine, but it makes no sense to me.

I had classic migraine with aura several times in the summer of 1997, and once this February.  I can't understand how the group of symptoms I've been exhibiting (terribly off balance, many widely varied vertigo-like sensations, vibrating sensations in peculiar places, steady area of my vision that is grayed-out, hot & cold spots, brain fog, fatigue) could suddenly change back to the pattern I experienced in 1997, and then a half day later suddenly return to the pattern I've been experiencing for months on end.

In addition, they've prescribed many so-called migraine treatments, each of which made things worse for me and provided no relief at all.  Some of them have explicit warnings not to use them in patients with certain histories and conditions such as some of those that I have.  When asked about that, the prescribing docs get very defensive.

All of the neuros I've seen so far seem to have grabbed onto the migraine diagnosis simply because it was there, not because it fit, and they won't bother doing the testing it would take to see if it could be anything else.

I hope that they are right in your case, and that whatever treatment they prescribe provides the long-sought relief.  In my case, I can't help taking it all with a strong dose of skepticism.
1 Comments
you may have migraines and fibromyalgia on top of migrains.  the only real test is medication and seeing how you respone and it is difficult troushooting for some doctors to diagnose it.  once you get that then no doctors will blain every condition you have which it comes on mostly because it is secondary.  migraines usually come from another condition which then that came from another condition mostly swelling which can come from most everything.  only thing you can do is go to one type, then another type because they don't direct you, when one tells you no, another will or might, then you may hit a jackpot.  I was lucky.  nuero gave pain pills which isn't the answer but other meds may and that is what is needed.  take whata you can give it a try.  then if you get a good response from the meds then it can be better to troubleswhoot but a lot of times they cant tell you what is c ausing it.
Avatar universal
Haha yeah it is odd. But migraines, from what the doc said, its not a headache, it does come with headaches sometimes (probably mos of the time) but it relates to the nervous system, and /or the caardiovascular system. That is why sometimes im off balance, have slurred speech, problems concentrating, pins and needles, etc.
He is the only one that ever came with a diagnosis.. since I have SO many symptoms, I forget to tell docs ALL of them even though I write them down... well he said ''your symptoms are so varied, it doesn';t fit in just one category of a possible disease, specially if you have all normal results...just to know, did u ever experienced headaches when everything started?"..I realized I completely forgot to tell him about the headaches..... so thats one point for him...and another one is that he asked if in my family there's someone with headaches...and my mom does have chronic migraines (not the ones I have, she has the ones that affects her stomach also), well then he said that now everything is more clear thanks to my mom... it kinda does make things clearer. I would have never guessed that migrain es have a genetic thing also.
Well so there are apparently many treatments, so we  need to start trying different ones. The medicine im bout to start taking needs to be taken for at least a mon th in order to see results. The drug is called Sibelium and it is anti-migraine, anti-vertigo. Hope it works eventually I will start on it next monday.
I wonder why nobody really stated that migraines can also mimic MS. I am in shock.
Cheers to all
Avatar universal
Udkas, whenever I get headaches, they are also mild... not really mild, it bothers but they are not like what they say about migraines (that are just a horrible torture)..Mine are more like tension headaches, sometimes they can get really irritating, and they last a long time...at least 5 hours... I notice they can go away if I sleep.
As I said I will be taking Sibelium and see if I can improve.
I always have visual disturbances, but seems like if I have the migraine attack, its worse because I feel worse, sometimes I have to think a lot to speak, feel fatigued, one of my pupils gets bigger, etc.... I do have chronic symtpoms though. Theres also something called Persistent Migraine Aura, some of you can check that out...
1 Comments
depends on how bad what it is that is causing it or how bad you have them.  cluster headaches.  it started out not so bad.  lived with it for a while, then omg.  it becan to be everyday in the mother pretty much.  swe lling in the  veins like vasculitis which is what I had and might have be4en the cause it is a vein disease so the blood cannot get thru to the back of the neck.  steroids and baby asprin sometimes work for me along with nurve pain.
Avatar universal
Great you got a dx and are on to treatment!! Good luck with it.

I must add, that i agree with wadeheather & PastorDan in their sketicism and continuing search. I saw a neuro once who was so insistent on my issue being migraines that when i was leaving the clinic he got in my way and face just to keep strongly making the point. I probably get migraines, certainly mind numbing headaches but I never thought them to be the "root" of the issues. I triend some of the migraine medicine, didn't really help my headaches. The warning list on one of the migraine medicines was so downright funny i thought i would be better off drinking RAID. LOL

For some odd reason he didn't or couldn't see that latest MRI and LP. Once they were seen, the clinic hasn't had me see that particular neuro since.

In your case Gaucho25, you state your tests came back normal, for the others here, I say keep searching ... it is [your] health ...

429700 tn?1308007823
Gaucho--I'm so glad that you finally found answers to what was wrong.  I'd find the best neurologist that specializes in headaches as possible.  There are many good treatments to prevent migraines and reduce their severity.  From what I understand from an explaination from my neurologist is that they can be a precurser to stroke, which I never knew.  Also, they can cause lesions in the brain.  A good neuro can usually distinguish demyelinating lesions from ischemic type lesions on the MRI that can be caused from mini stroke or migraine.    

The symptoms that you've described are more common for me after and during a migraine attack than before I get one.  After a hideous migraine I will have a weak arm, slurred speech, and some pins and needle feelings, but it always goes away within a few hours after an attack.  My MS symptoms have never gone away or take weeks or months to go away.  

I'm happy that now you can get the treatment you need and have some hope that your symptoms may be a thing of the past.

Warm regards,
Deb
198419 tn?1360242356
Hi Gaucho -

Congrats on your dx! Hope the migraine meds help you out, bigtime!

Thanks for coming back and taking the time to tell us all about it.

Hope you'll stick around let us know how you make out.

-shell

Avatar universal
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.
649926 tn?1297657780
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 :)
Avatar universal
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.

1 Comments
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.
Avatar universal
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?
1 Comments
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.
667078 tn?1316000935
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
Avatar universal
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?
Avatar universal
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....

1253197 tn?1331209110
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  
Avatar universal
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 ????
2 Comments
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.
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
Avatar universal
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?
Avatar universal
So who finally diagnosed it?  What kind of specialist? What did he/she use to come to the diagnosis?
1 Comments
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!!!!!!
Avatar universal
:) Like!   Thanks Gaucho29.  You gave me more enlightenment.  Wish us all the Best !
Avatar universal
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
Avatar universal
Hi, was your dizziness constant? I have migraines and have had constant disequilibrium for the last 3 months.
Avatar universal
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.
1 Comments
Magnesium for which symptoms?
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