Neurological symptoms and more

[briarrose]

I?m very interested in the first column of symptoms. I?ve recently had more neurological problems with my vision and muscles. I?m wondering if anyone else has experienced this associated with POTS/dysautonomia? I think that some of these symptoms are indicative of MS.

Has anyone else experienced any of these symptoms?

Vertical nystagmus (where your eyes move up and down rapidly)

Vision flickering (kind of like if you look at the shadow of a burning candle on a wall.)

Involuntary head nodding

Blurred vision

Excessive tearing

Spasms around your eyes

Vertigo

Light-headedness

Headaches/migraines

Tremors

Muscle spasms everywhere

Muscle cramping

Bone aching

Joint pain

Sensation of a hot pin being inserted in your muscles

Numbness/tingling of your extremities/extremities falling asleep/prickly feeling

Goosebumps leave an uncomfortable sensation

Off balance

Confusion or brain fog

Complete exhaustion or fatigue

Loss of smell

Tinnitis (ringing or muffled sound)

Tongue gets numb or tingly (especially if your hungry)

[Valiant Effort]

If it helps any I have had just about everyone of your systems. The one I hate the most is when my mouth starts to quiver and I can,t control it.

[Merrill]

Briarrose--I've had some of these symptoms, but not all. I wonder how frequent these are for you? Constant? Only sometimes? I also wonder whether any of these could be the effects of some medications... (I wish I had time this morning to go back and read old posts to see what you might be taking... sorry!)

My brother was diagnosed with MS a few months ago; the first optical symptom he had (a number of years ago, actually) was called optical neuritis (in one eye), and the symptom is not like any you describe. It seems like a curtain is being pulled over one eye, and you essentially lose vision in that eye almost entirely. This is the most common early (visual) symptom of MS. As for the other symptoms, these were not his experience either--and he has suffered, and suffered, from many. (The Avonex has finally gotten things under control and he feels much better, thank G-d.)

Please see if you can get an MRI of the brain and spine, though. Everyone's different, obviously! It's important to get some answers--either to set your mind at ease (dysautonomia is WEIRD) or to begin treatment for a new condition that may have developed. (There are many good ones out there! I've seen that even MS can be successfully treated and managed--my sister-in-law has MS too, and she too is doing GREAT on Avonex.)

Take good care,

Merrill

[briarrose]

Valiant Effort - it helps to know that others have weird neurological symptoms too.

Merrill, thanks for your reply. I got an MRI of the brain yesterday. My doctor was skeptical when he ordered it. I was hoping that it wasn't MS but know of others on this website who have had MS type symptoms. I asked about medications too thinking that it might be a side effect from one of them. I take the following:

Epogen injections - once a week

IV Iron - ( was once a week, currently once a month)

Daily

Betatoxol (beta blocker)

Neurontin

Pepcid

Synthroid

Zoloft

Florinef

Ferrex

PRN

Imitrex

Zofran

Quinine

Think that's all of them

I had the first episode with my eyes last summer. The last 2-3 months I have had several more episodes and additional symptoms.

Thanks for your input

Steph

[Merrill]

Steph, let us know the results of your test when you get them! I hope others on the forum will share their experiences with some of those meds--I've certainly heard others say that side effects developed even years after taking something.

best,

m

[calypso]

I've had headaches, vertigo, lightheadedness, bone aching, the prickly feeling/parts of my body easily falling asleep, goosebumps (I often get an odd sensation that the hair on my head is standing up on just the left half of my scalp), complete exhaustion & brain fog pretty much daily since the POTS started.

The second month I had POTS my muscles twitched pretty regularly, but that's now gone and instead I just feel like my muscles tire out with little exertion and feel very weak all the time. The bone aching just started a couple weeks ago -- I feel the bones in my feet aching, and it makes me feel like I have butterflies in my stomach at the same time. That's a weird one.

More weird stuff for our totally bizarre bodies.

Amy

[briarrose]

Merrill

I should know test results friday.

I would like to point my finger at the meds, there is only one problem.

Most of these meds are from since I've started seeing Grubb and that was after the first onset of most of these symptoms. The only meds I was on previously to symptoms were Synthroid, Atenolol and Pepcid.

I would like to know that it's POTS and not anything else. I know there is no way possible to have an answer on that unless there was one medical professional interested in all the symptoms that we experience and then comparing if more than one person is having them.

Steph

[geneva]

Steph, I have had some but not all the symptoms. I can share that for about 4 or 5 months before I was diagnosed with POTS, the specialists I saw all thought I had MS. I did the brain MRI first which was normal. Then the neurologist thought that maybe MS was in the very early stages and wanted to have both a spinal MRI done and a spinal tap (which almost killed me!). All were negative so I was told to go home and not to worry because whatever was wrong with me would need to reveal itself in other symptoms before they could figure out what was wrong with me. 5 months later in the hospital my standing HR finally gave them the clue they needed for POTS dx.

I remember reading all the early signs of MS during the month of tests and I had many of them. However with ANS problems many are the same. I hope that you get peace of mind with the results and I think you were right to push your doctor for the MRI. It is better to know, than to worry. Good luck.

[Deb]

Hi Brierrose,

I've had almost everyone of your symptoms at one time or another except for the last three. As far as I have understood my doctors, they are all connected to my POTS, whether it's from the anxiety that came after the POTS or from the midodrine that causes the vessels to constrict and thus causes me to have something called myoclonic (sp?) jerk. I just started having the flickering vision, but most of the other spasms, jerks, and shaking is gone.

Hang in there. It won't hurt to ask, and to rule out other things. That's what brings peace of mind.

[MomtoGiuliana]

I've also had the following symptoms from your list:

Involuntary head nodding

Blurred vision

Vertigo

Light-headedness

Tremors

Muscle cramping

Bone aching

Joint pain

Sensation of a hot pin being inserted in your muscles

Numbness/tingling of your extremities/extremities falling asleep/prickly feeling

Goosebumps leave an uncomfortable sensation

Off balance

Confusion or brain fog

Complete exhaustion or fatigue

Tinnitis (ringing or muffled sound)

I had TWO MRIs, and they were completely normal.

Katherine

[briarrose]

Thanks everyone!

Your replies give me peace of mind. I contacted one of the leading researchers in the country early this morning and they hadn't heard of all those being associated with POTS. But I think there is a lot they don't know yet and I guess it's possible.

I'm glad to hear that I'm not alone and that is just a huge relief. I didn't post all my symptoms, just the ones I thought were more neurological. LOL

I didn't want to put anyone to sleep

Thank you everyone for your support and replies.

[Guest tearose]

Hello briar, sorry I'm so slow to respond. I too have recently had alot of "neuro" type of symptoms and I was most frightened when my vision went blurry. Add to that a strong numb feeling on one side of my face and pain and numbness at the back of my head. Well, to get to the point after four months and several tests including mri,...one neuro-opthamologist said he saw no permanant damage in my vision and that my that my vision deficits are due to to my dysautonomia. He explained it this way: Often he will get a call to see a patient who just came out of heart surgery. The cardiologist does not understand why the patient is complaining of double vision/blurry vision since they are recovering well and had good vision before the heart surgery. The neuro-opthamologist believes that the human body does what it must to heal and if that means taking strength away from some other function to do so it will! I sure don't have a problem understanding that and when I gave it more thought, I have been under way more pressure and challenges lately which would explain the onset. His name it Dr. Forman and he is at the Westchester County Medical Center in Valhalla, NY. Call him if you want, he was very willing to explain everything. I still resist taking medicines although for the facial and neck pains the plain old neurologist suggested neurontin. My symptoms are not permanant so I hope to avoid neurontin. I'm trying to treat my symptoms on an "as needed" basis with less long term things. And as you may know we are moving to a no-step ranch type home to help destress my heart and body too. Good luck and tell me what you do. Feel better, tearose

[briarrose]

Tearose

I hope your move goes well and you enjoy your new home. I'm sure it will be very beneficial to your health. Btw, I take neurontin and it's the only medication that has taken care of my joint pain.

I would like to call Dr. Forman and see what he has to say about all of this. The more information the better.

I had a brain MRI last week and I'm still not completely sure what to make of it. I don't have MS. They said they saw spots in my brain that are like having mini strokes but that it was also what they would expect from someone that has episodes of hypotension. Hmmm........

I'm a little confused today about the whole thing. I was kind of suprised about that being their finding so I wasn't prepared for what questions I wanted to ask.

[Merrill]

Briarrose--I'm so glad to hear that you don't have MS... but I sure can understand why you'd have more questions...even if you don't know what they are yet. Keep digging for the truth. It's there somewhere; clearly some doctors know more than others about dysautonomia and the body's healing systems. (And those that don't know probably know about something else instead... at least one would hope!)

I too have been a lot more symptomatic lately--don't know if it's stress ... or if the longer days mean I'm trying to be more active and accomplish more than I can actually handle, or what! It's extremely annoying. Somehow, though, I take some measure of comfort in knowing it's the POTS when I'm feeling crappy. That may sound weird, but at least it's not a mystery any more (even tho I understand so little about what's going on and why and what the triggers are and so on).

Take care,

m

[ethansmom]

I am so glad you don't have MS- that can be a scary thing. I had an MRI done when I first got sick because so many of my symptoms were so close to those of MS, and I too was relieved to know it came out negative. From your list, these are the things I have experienced in the last 2 years since I got sick:

Spasms around your eyes (in fact when I went to Mayo the dr. noticed it and sent for a full vision workup)

Vertigo

Light-headedness

Headaches (usually mild)

Tremors

Muscle spasms everywhere

Muscle cramping

Bone aching

Goosebumps

Off balance

Confusion or brain fog

Complete exhaustion or fatigue

Tinnitis (ringing or muffled sound)

Good luck finding out some things about what they DID find on your MRI- hopefully it isn't anything to be overly concerned about!!

[DawnA]

Briorose, THe first thing that came to my mind with the mini-strokes is a mitochondrial disorder. Have you ever had any stroke like episodes? Do you have a lot of migraines. It is worth them looking into to it somewhat. At least looking into your lactic acid levels. I do not mean to scare you. I just want to make sure it is not missed.

Dawn

[briarrose]

Dawn

Nope

I've never been tested for mitochondrial disorder or Lyme disease. In fact since I've never been diagnosed and it's never been hinted to me, I really don't know what mitochondrial disorder is. So I will do some reading today on mitochondrial disorder when I get to work.

I do have a lot of migraines, they started about 6 years ago or so. I have periods where I can't think, can't talk - slurred speech or I tangle my words, someone can say something to me and I can't remember past 10 seconds what they said, blurred vision, tingling in my extremities, etc. But I just assumed that ever weird symptom like this is POTS.

Someone told me that POTS is often accompanied by other illnesses and it's just a matter of time before they reveal themselves. I don't know if this is true or not.

Thanks Ethansmom, Merrill and Dawn for your support and your recent posts

Thanks for one more possibility to explore.

I'm glad that I'm seeing Dr. Grubb in August again. I'm starting to write down questions, although I try to weed them out and make them brief. I feel horrible for him and grateful. I'm so glad that he's there for us but I wish he had a team of people to help him.

Steph

[Guest Julia59]

I copied and pasted your symptoms and erased the ones that I do not have---and then added some that I have in addition to the symptoms listed.

Vision flickering (kind of like if you look at the shadow of a burning candle on a wall.)

Blurred vision

Excessive tearing

Light-headedness

Headaches in the back of my head

Tremors in arms---with any type of exertion---lifting especially

Muscle spasms everywhere

Muscle cramping

Bone aching

Joint pain

Numbness/tingling of your extremities/extremities falling asleep/prickly feeling

Off balance

Confusion or brain fog

Complete exhaustion or fatigue

In addition to above symptoms---i'm adding a few more.

very slow gut motility/constipation

lost control of fine motor skills in my hands

irregular heart beats with exercise

very weak or missing radial pulse in right wrist

Pain in my right upper chest/clavical/shoulder/arm pit/upper spine/neck

ear pain

unstable joints

Tachycardia and hyper adrengic attacks are under control with meds.

I am diagnosed with POTS---Hashemoto's thyroid disease-----congenital cervical spinal stenosis-----and chiari malformation without herniation.

Julie :0)

[ramakentesh]

i havew many of these visual symtpoms from time to time - maybe its because the eye eats up a lot of oxygen and if its depleted they are sensitive too this - my vision is aways weird when im symptomatic.

[briarrose]

I saw a neurologist for some of the neuro symptoms and he told me that some of the visual things that I experience is an aura and I've been having painless migraines, weird huh.

[hayley]

i get most of those symptoms plus differnt ones.ive recently developed a blind spot in my right eye and its like a curtain covering half my eye.but ive had an mri of my head so maybe its just pots.im not on medications

[Guest tearose]

With the return to frigid weather, my neurological eye symptoms and sinus problems have flared. I don't have any answers or even know my own questions right now!!!

I'm taking the wait it out approach. I call it the wonder bread method of problem solving....

Based upon the story/midrash of wonder bread...

These cheap entrepreneurs took air, flour, water, salt, yeast, and a bit of rocket fuel waste (said here with love) and threw it together and kneaded it and threw it in the oven and said what is it? They scratched their heads and said "i dunno , i wonder what it is?" they asked around for a week. When people tasted it, most said "I wonder, maybe it tastes like bread".

The entrepreneurs decided to call it bread. Wonder bread. It's a wonder!

Summary, when I don't know how to figure out a new symptom I wait a week. I either have a continued problem or I "wonder" what it was I was concerned about to begin with.

just funky today, tearose

[briarrose]

Tearose you kill me you're so funny

I'm going to put stock into you and sell your ability to write!

[Nicole's Mom]

Steph,

All those symptoms can be scary. When the body is in disarray so much can occur in so many forms. It isamazing- how much can go on. I'm glad to know that MS has been ruled out. You suggested that you might get tested for Lyme which I've mentioned on the forum - that I have.

Because of all the Lyme activism work that I 've done- I was in contact with many Lyme patients. Many of the people I've spoken with were misdiagnosed- with something else. This is a huge problem in the Lyme arena. I personally know of 8 people who have Lyme that were originally diagnosed with MS. The symptoms are similar. Lyme is called "THE GREAT IMITATOR" and for good reasons. In the literature for Lyme there is much about misdiagnoses- many have been diagnosed with all sorts of things when they had Lyme. Lyme can also cause dysautonomia symptoms according to our brilliant infectious disease doc who unfortunately moved to CA from RI. She had Lyme patients who also had dysautonomia.

Anyway- this is for you or anyone with POTS who wants to get tested for Lyme. Just like you'd go to the best, most knowledgeable POTS doc - because you want someone who understands the entire scope of the problem- the same is true for Lyme. There is a huge medical politics war going on in the Lyme arena and because of this there is lots of misinformation is out there. So you would want to see what Lymies call a LLMD = Lyme Literate M.D. This would be an M.D. who specializes in diagnosing Lyme and treating Lyme and one who knows of the labs that are best to send specimens. These docs are less apt to rely on tests that are known to be unreliable and more apt to use the tests along with what the patient reports to make a clinical diagnosis.

Anyway- I actually have been holding back talking about Lyme. But now that you mentioned Lyme on the forum- I could not hold back from putting my two cents in. Later on today or tomorrow - I will report on two places one can go to find LLMD's if they wish to pursue this. I just want to make sure I have my sources correct before I post this.

Take care,

Steph