Neurological Issues - No Diagnosis

[caribou11]

I have Ehlers Danlos Syndrome Type 3 (Hypermobile) and just recently was dx. I am 26.

When I was 13 I had an episode of vertigo that lasted just seconds but dropped me to the floor. Ever since that day I continued to have random episodes of vertigo and/or ataxia like symptoms (disequilibrium... couldn't walk straight). The episodes came maybe once every 3-6 months for most of HS. So I could work around it. (Dr. told me it was stress caused)

During college my episodes got worse and more frequent. Besides just ataxia I also had slow processing, slurred speech, saying wrong words, and it lasted sometimes from 1 min to an hour with disequilibrium lasting until the next day.

Fast forward a few years I am married, I have a 1 year old son... I started having my episodes almost daily. Plus now my knees were buckling and sometimes my legs felt so weak I couldn't walk (when I wasn't in an episode I had full muscle strength). Also I started feeling this weird sensation in the back of my head. Sometimes I feel like I am going to pass out black (rarely)... most times my body feels like it is losing control and I am awake but collapsing. It is a terrifying experience.

I have been to The Chiari Institute in NY and was not given a dx of Chiari because I don't have headaches. My cerebral tonsils are low lying (1-2 mm herniation) and I have a very mild CSF blockage. Dr. Kula referred me to Dr. Francomano for EDS. She confirmed that dx but could not explain my neurological symptoms.

I do not show any neurological problems when I'm evaluated in the Dr. Office except that I can't hold my balance with my eyes closed.

Can anyone relate to this? I'm not sure where else to go for answers...

Tilt table was negative for POTS

No heart problems, no seizures, no strokes, no ms...

Only possibility that is still on the table is Episodic Ataxia. Which I have to get a genetic test for and the lab that my neuro had me call doesn't test for it... lol

Another idea I have from reading these forums is Gluten Ataxia... very new idea to me, but I'm totally up for going GF if I get my life back.

Can anyone relate to these issues/offer advice or insight? Any Drs you'd recommend seeing?

Thanks so much!!

[gertie]

I have similar symptoms from Meniere's. When I am having a Meniere's attack I am so weak & lethargic I can hardly move. I have had what is called drop attacks when you fall to the floor. I guess the worst part is the vertigo, nausea, can't walk. When I close my eyes while standing I fall. I have to be careful of eating too much salt & food allergies can also trigger an attack. Have you been check by an ENT for Meniere's? Some people say Valium is a life saver for them during an attack. I can't take Valium but Ativan seems to help some. Hope you find answers.

[sue1234]

Alicia,

I've heard of "drop attack" when I was reading a few months ago about Chiari. I think it is a very significant symptom of it. If I remember correctly, that's a key phrase that a good Chiari-doctor will jump on when he hears a patient mention it. Have you been evaluated?

[ramakentesh]

POTS can give off some pretty bizarre symptoms - there are a myriad of different disorders under the POTS umbrella and these cause all sorts of odd symptoms.

That being said, in a small minority of POTS patients they go on to develop MS. Not saying your one of them because usually the first symptom of this is optic neuritis.

[issie]

POTS can give off some pretty bizarre symptoms - there are a myriad of different disorders under the POTS umbrella and these cause all sorts of odd symptoms.

That being said, in a small minority of POTS patients they go on to develop MS. Not saying your one of them because usually the first symptom of this is optic neuritis.

Rama,

I think that my issues in addition to POTS seem so MS like. I have all the issues of this poster. Including the inability to at times pick my legs up. I have eye issues and all sorts of weird stuff. Hoping that Mayo in a few months will give some additional insight. I also have a 2mm drop of the cerebellum and EDS. This is a drop from a lying MRI - if I were upright, my guess is it would be worse.

[ramakentesh]

There was a study that came out recently from Toledo - 5 patients that got POTS after MS and three that developed MS after developing POTS. Hope this doesnt apply to you. MS in particular is often associated with numbness, ataxia and optic neuritis - blind spots in the eyes.

[Csmith3]

I can relate to your story, though I don't think my symptoms are as bad or persistent as yours. I don't have an explanation for the neurological symptoms either. My symptoms magically disappeared over the last few years and have recently come back. I have had POTS symptoms throughout the intervening period and they have not deteriorated recently. Therefore, I am reasonably confident that the neurological symptoms are not directly related to POTS.

One thing that consoles me is that I think the symptoms were worse in my teens and 20s, so I take some comfort from the fact that they have not progressed nor caused me any serious problems to date.

I am about to return to the neurologist. I am suspicious that some of my symptoms are post-seizure and whatever is causing this is triggering the horrible vertigo and ataxia symptoms. Since, fundamentally, nothing has changed in the last 20 years, I am not that hopeful of getting answers to the ataxia (I have had many clear MRIs and neuro exams other than poor balance), but I do need to follow up on the seizures which I appreciate is not an issue for you. If anything new does come up which might be of wider interest, I will let you know.

[Friedbrain]

Question for you-did you get a worsening of symptoms after you had your son, and was it after reducing or stopping nursing? The reason I ask is that "my brain blew up" (what I called the time when almost out of the blue, my balance went, my ability to move my eyes stopped, and I went on to have seizures including status epilepticus), all within a two month span, when I went down to night-nursing. This was after I'd been nursing my son for a while, experienced some stress and slowed the nursing down to only at night (he was two), and started a new menstrual cycle. What I suspect happened is that I'd been running on reduced hormones for so long that when I got my hormones back, it was like BAM to my system. In scientific terms, an upregulation of receptors because the hormones were low, and then all of a sudden it's like a flood.

During that two month window, I had two ER trips that resulted in a total of ten days in the hospital while they ran all sorts of tests because I couldn't walk without holding the wall, I saw double and my horizontal gaze was gone (6th nerve palsy-one name they DID give my symptoms), seizures, and a variety of peripheral problems that they thought were due to MS, tho I never tested positive for it.

You know, {{{{hugs}}} because now that I think back to that time, I get chills all over again and I just realized what you must be going through, with a young child and having such serious health problems... If it helps, I've btdt. It took time to find medicines to address some of the problems, and some of the problems simply went away (and yeah, they come back now and then, but I know I can live through them, and I do). And yeah, eight years later, I'm still struggling to find answers, but I'm alive. I guess it's good for me to remember that.

Oh, and my symptoms continue to be associated with my menstrual cycle, fwiw. Definitely. You might try keeping a calendar of your cycle and writing your symptoms down as you go. It took me a few months to notice the pattern, but starting my period in the hospital two months in a row was kinda obvious after the fact.

[caribou11]

Thank you all for replying...

I have been evaluated for Chiari but don't have the typical "Chiari headaches" so didn't get that dx... which I guess is good cause I don't really want brain surgery...

I don't shows signs of MS on my imaging so I am hoping that that isn't it!!

I am hoping that this is all diet related... if its hormone related is there anything to do about that?!

My symptoms did get WAAAY worse after my son was born...

My son was born in Aug and I nursed him until 10.5 months. My period came back at 7 months and I had a slight increase in symptoms. When he was 3 months I went non-dairy b/c I discovered he had a milk sensitivity. He grew out of it around 10 months and I started introducing dairy again. Also during this time I was in a minor car accident, with no significant whip lash, but I still think it could have affected me a bit (I wasn't evaluated by a Dr.). It was after this that my episodes became daily and I couldn't function. I had to walk with a cane and sometimes had to be carried by my husband. The symptoms have slowly faded but seem to come back just not as intense.

I am now pregnant (23 weeks)... and have felt pretty well so far, but I am terrified of whats going to happen after this one is born!

When I went non-dairy I had to eliminate almost all processed foods as my son would have a reaction to chicken nuggets with whey in the breading... so I am n assuming I also cut out a lot of gluten as well.

I am thinking of going gluten free soon. Also I am planning on going dairy free before next baby is born and then I'll introduce milk to see if she is sensitive too. We couldn't figure out what was wrong with my son till 3 months... and I felt horrible knowing all his crying for 3 months was because of my diet! His dr had no idea... it was from forums like these that I figured it out...

The internet is so great sometimes! Thanks for all your responses and support... you all make my life that must easier