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Like Father Like Daughter, New Here

Hello everyone! I am new here but I have been lurking and reading a lot of your stories over the past couple of weeks. Quix and supermum (I think) especially, you two and several others whose names I can't remember are pretty funny in the face of all this and have really helped me to not "freak out" and stay positive. BIG Thank you!
So a little about me: I am 34 and the mother of a beautiful 4 year old daughter. I own and operate several businesses, the largest in 11 states and growing. Oh one more relevant fact, I lost my dad due to complications from MS 10 years ago.
My Nuero story so far (this is going to get a little long so I apologize in advance): When I was 17 I developed a seizure disorder out of the blue. I was in the hospital for what appeared to be an asthma attack when the seizure hit (hence witnessed by lots of medical personnel as I was rushed to trauma because I stopped breathing). couple months go by and bam, another one and a referral to my first of a long stream of largely incompetent Nueros. Ill not bore everyone with all the details here but 13 years, and 17 (not a typo) Nueros later I was finally diagnosed with cluster partial complex w secondary generalization epilepsy. The cluster part is because I get long breaks from them much like a remission. These seizures are more like very painful fast muscle spasms in the upper ab area, think trying to break the world record for how many crunches you can do in a minute.
Next, 18 years old and if the seizures aren't related then what came next was possibly the first clue toward MS. I started experiencing numbness and weakness in my left hand and was dropping things constantly. I was sent for a nerve study and the doc that did it sent a report back suspicious for MS. Back to the Nuero. "Your too young for that" It went away, I moved on.
Then one day I end up in the ER because foggy was a bit of an understatement, my legs were extremely weak, I was having a hard time understanding conversations and then finding words to respond and my vision was this weird kind of blurry. they did a CT and found a round bright spot on my occipital lobe left side. Back to the Nuero I go. At this point I had already seen 15 whose standard answer when they couldn't find an answer amounted to Conversion Disorder in various forms. Needless to say I was pretty fed up with this particular branch of the medical field. I did some research to find the best Nuero in the area for this one. And he warrants special consideration here as he turned out to be a vile evil little man.
So off I go to this new Nuero with high hopes for some answers. He took a look at my CT and said "its nothing, just a mushy spot" WHAT?! Im no Dr but Im pretty sure "mushy spots" aren't supposed to be on your brain but whatever. He then focuses on the seizures which remain undiagnosed. Test Test Test Blah blah blah and somewhere in there my left hand comes back with a vengeance. Not only is it the annoying weakness numbness tingling causing me to drop things like before but now I was getting PAINFUL muscle spasms in my hand that actually caused my hand to turn in on itself and visible muscle spasms up my left arm. He does what any concerned doc would do and ordered a nerve conduction study. During the test the muscle spasms reared their ugly little heads so the test administrator walked me over to the doc. He barely looked at my hand and lower arm grabbed me by the upper arms (this was in the hallway) and started to shake me while yelling at me that I had a "severe mental disorder". I was TERRIFIED. While he was shaking me and yelling at me another doc came out of another room to see what the commotion was. He took one look and yelled "Richard what the h***are you doing". He said back this girl is faking it and wasting my time, look at her! Well he did. He gently and with compassion took my hand in his and closely looked at my arm and turned back to the other dr and said did you actually even look at this? Look at her muscles, its NOT POSSIBLE to fake this, muscles can't move this way on purpose. Have you sent her for studies for MS or stiff mans? My doc, without looking, exploded again and said yeah sure why the h*** not, lets send her to the cleveland clinic so she can waste their time too. He grabbed his script pad and wrote a script for a blood test and wrote dx she thinks she has stiff mans now and practically threw it at me. At that point I ran out sobbing and never went back. I really wish I were exaggerating any part of this.
I did not return to any nuero for quite some time, I was hurt, scared and fed up. Then a couple years later I started having these weird spasms in my eye with black spots so I went to the eye dr who sent me to an ophthalmologist. MS referral number 2. This time I was sent to a movement specialist, she was about 12 years old, took one look at my eyes painfully rolling around in my head said Ive never seen anything like that and that was the end of that. It went away, I moved on.
Until I had my daughter and the spasms came back again. This time my GP (awesome guy) said this is a new seizure symptom I think, so even though I know how you feel please go see my friend Neurologist. I went he was a great guy that finally actually listened to me diagnosed my eyes as focal seizures based on my history of seizures and diagnosed the seizures as Partial complex despite EEG's all negative. He said sometimes it just doesn't show up. Prescribed new meds which as usual I did not tolerate very well and don't really work. He focused on the seizures though and none of the other bizarre transient symptoms.
About a month ago I started experiencing numbness and tingling in my right leg with pain. I went to the doc. He yelled at me for waiting so long to come in, prescribed some pain meds and zanaflex and sent me to a physiologist. The reflexes in my leg were gone. He dxd S1 Radiculopathy and sent me in for a lumbar MRI for a herniated disc. While waiting for the MRI my leg got a lot worse and walking became quite a challenge, running impossible. MRI came back a ok. He repeated the nuero exam which I failed brilliantly again and said what I was already very much afraid of. "I think this is MS" I very tearily told him my dad had it and was in a wheelchair by the time he was 40 and he said "now I am even more concerned with it, I want you to see my Nuero friend".  I went to his friend yesterday who was another great doc. He listened and listened for an hour and a half of everything, went through a slightly more comprehensive exam which again my right leg failed miserably. He also got my eyes to do "the thing". He also said he was very concerned, especially given the family history, that is was MS as well. He ordered the following tests:
MRI of brain and C spine w &Wo contrast
Comprehensive Metabolic
Hemogram
ANA
Anti-DNA
Folic Acid
Hemoglobin A1c
RPR
B-12
Vit D
Mathylmalonic Acid
Antiphospholipid antibodies Ish and Igm
Lyme Titre
ACE levels
He said he wanted everything else it could be ruled out. I go in for the MRI Saturday and follow up on Tuesday. Despite the obvious this is the first time MS has been seriously considered. My Dad was convinced I had it btw, he said I was too much like him with what was going on and seizures can be a presenting symptom although rare. I am scared what it can mean if I do have MS but I also understand treatment and options are much better than what was available to my Dad so I am trying to keep my head up. My BF has been fantastic and told me if thats what it is we will deal with it, Im not going anywhere so don't even go down THAT worry road.
Thank you all for reading and really for unknowingly being my rock over the past couple wks.
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Avatar universal
Thank you all for the warm welcome!

Kyle, thanks so much for taking the time to break up my text. I thought my problems posting were because my post was too long until I figured out it didn't like the direct quotes from Dr. Tiny Little Man, lol. Anyway, thank you for this and the kind words of encouragement!

Karry, Thank you! I am currently bouncing between fear of the unknown and exactly the same relief you describe. That is the feeling I try to hold onto.

Supermum, I think you really are what your name says, I hope your kiddos are grateful! Mine totally takes advantage of me... such is life, lol :) thank you for the encouragement and hugs, especially the part about my Dad. I know this somewhere in my brain but it does help to hear it.
I stumbled across the post you recommended a couple weeks ago and enjoyed it then and again today.

Ess, Thank you! I love a good laugh by the way. I bumped the one about nicknames up with a couple of my own so I hope no one minds. Quix's limbo land (I think that was the one) had me laughing at loud in my office with strange looks from the "water cooler" just outside my office. I fully plan to reread as necessary when Im having a bad day.

As for the bedtime story to help a member sleep; WOW is all I can say. Just as soon as I was done laughing (above) I found myself crying. That really hit home with me. I really think that should be published as it is truly beautiful. Hey! Great idea! Maybe the proceeds could go to putting a few regular folks into the White Coat Clan after they show immunity to whatever disease it is THEY get once they change their names to Neuro,I shall borrow from someone and call it TWD w E (TidlyWinks Disease with Escapism)  lol.

Anyway, Thank you all again! I have a couple of questions but I will put them into new posts so they do not get lost and can maybe help others too.

Helpful - 0
Avatar universal
Helpful - 0
5887915 tn?1383378780
Hi there & another welcome to the MS forum.

You have found a great group of people who are knowledgeable & caring so I hope you feel you can ask any questions you may have. I am so very sorry to hear what you have been through & I really think the one Neuro could be up for malpractice. I have heard of many bad experiences but I think yours takes the cake.

The link JJ has given you is one of my favourites. This actually helped me through the diagnostic process & made me more prepared for the process. It's a great read I promise you......you will laugh until you cry which is always good for ones mental health.

It sounds like your current Neuro is doing all the right testing & they sound like a keeper. Try not to worry about any possible dx whether it's MS or something else because this can make your symptoms worse. I was dx'd  Sept last year & to be honest it was a huge relief to me. I have had symptoms spanning back 15 years so the dx was sort of like "oh so that makes sense now" feeling. The dx has also enabled me to tackle many of the unexplained symptoms I have had & improve my quality of life.

Keep us updated on how things are going.

Take Care,

Karry.
Helpful - 0
987762 tn?1331027953
COMMUNITY LEADER
Hi and welcome to our little MS community!

OMG wow what a nightmare neuro experience you've had, golly and I thought mine was a doozie lol you make mine look like a walk in the park hmmm now if you like to laugh, check out these stupid and dumb doctor comments.........

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lies-My-Neuro-Told-Me/show/1265?cid=36

Try to keep in your mind, that you've been dealing with 'this' for years, and whilst you may finally get it's correct name, what you've been dealing with isn't actually new, just it's correct name would be new, so take a deep breath, and stay positive!

Hugs..............JJ

btw YOU are not going to be the same as your Dad, even if it does turn out to be MS, you are uniquely YOU!
Helpful - 0
1831849 tn?1383228392
Now that that's done, welcome to the group :-)

Every symptom you describe can be caused by MS. They can also be caused by many other things. While it took you 17 tries, it sounds like you have finally found the right neuro. This is big!

Having a doc that listens and doesn't prejudge is great. If they listen and know their stuff, even greater. I know you have been on this road for a very long time, but it sounds like the end may be in sight.

Given your family history, your concerns about the potentially devastating effects of MS are well founded. But as you pointed out there are multiple treatment options available today that did not exist even 10 years ago.

Let us know how things go Saturday and Tuesday. Ask us lots of questions.

Kyle
PS I knew my current neuro was the one for me when in the initial consult he asked why I had let things go on for so long. Without allowing me the chance to answer, he said with a big smile "Because you're an idiot. That's why"
Helpful - 0
1831849 tn?1383228392
Hi BB - Many of our friends have visual issues that are eased by adding lots of space. I have taken the liberty of spreading out your original post.
Kyle

Hello everyone! I am new here but I have been lurking and reading a lot of your stories over the past couple of weeks. Quix and supermum (I think) especially, you two and several others whose names I can't remember are pretty funny in the face of all this and have really helped me to not "freak out" and stay positive. BIG Thank you!

So a little about me: I am 34 and the mother of a beautiful 4 year old daughter. I own and operate several businesses, the largest in 11 states and growing. Oh one more relevant fact, I lost my dad due to complications from MS 10 years ago.

My Neuro story so far (this is going to get a little long so I apologize in advance): When I was 17 I developed a seizure disorder out of the blue. I was in the hospital for what appeared to be an asthma attack when the seizure hit (hence witnessed by lots of medical personnel as I was rushed to trauma because I stopped breathing). couple months go by and bam, another one and a referral to my first of a long stream of largely incompetent Nueros.

Ill not bore everyone with all the details here but 13 years, and 17 (not a typo) Nueros later I was finally diagnosed with cluster partial complex w secondary generalization epilepsy. The cluster part is because I get long breaks from them much like a remission. These seizures are more like very painful fast muscle spasms in the upper ab area, think trying to break the world record for how many crunches you can do in a minute.

Next, 18 years old and if the seizures aren't related then what came next was possibly the first clue toward MS. I started experiencing numbness and weakness in my left hand and was dropping things constantly. I was sent for a nerve study and the doc that did it sent a report back suspicious for MS. Back to the Neuro. "Your too young for that" It went away, I moved on.

Then one day I end up in the ER because foggy was a bit of an understatement, my legs were extremely weak, I was having a hard time understanding conversations and then finding words to respond and my vision was this weird kind of blurry. they did a CT and found a round bright spot on my occipital lobe left side. Back to the Nuero I go.

At this point I had already seen 15 whose standard answer when they couldn't find an answer amounted to Conversion Disorder in various forms. Needless to say I was pretty fed up with this particular branch of the medical field. I did some research to find the best Neuro in the area for this one. And he warrants special consideration here as he turned out to be a vile evil little man.

So off I go to this new Neuro with high hopes for some answers. He took a look at my CT and said "its nothing, just a mushy spot" WHAT?! Im no Dr but Im pretty sure "mushy spots" aren't supposed to be on your brain but whatever. He then focuses on the seizures which remain undiagnosed. Test Test Test Blah blah blah and somewhere in there my left hand comes back with a vengeance. Not only is it the annoying weakness numbness tingling causing me to drop things like before but now I was getting PAINFUL muscle spasms in my hand that actually caused my hand to turn in on itself and visible muscle spasms up my left arm. He does what any concerned doc would do and ordered a nerve conduction study.

During the test the muscle spasms reared their ugly little heads so the test administrator walked me over to the doc. He barely looked at my hand and lower arm grabbed me by the upper arms (this was in the hallway) and started to shake me while yelling at me that I had a "severe mental disorder". I was TERRIFIED. While he was shaking me and yelling at me another doc came out of another room to see what the commotion was. He took one look and yelled "Richard what the h***are you doing". He said back this girl is faking it and wasting my time, look at her! Well he did. He gently and with compassion took my hand in his and closely looked at my arm and turned back to the other dr and said did you actually even look at this? Look at her muscles, its NOT POSSIBLE to fake this, muscles can't move this way on purpose. Have you sent her for studies for MS or stiff mans?

My doc, without looking, exploded again and said yeah sure why the h*** not, lets send her to the cleveland clinic so she can waste their time too. He grabbed his script pad and wrote a script for a blood test and wrote dx she thinks she has stiff mans now and practically threw it at me. At that point I ran out sobbing and never went back. I really wish I were exaggerating any part of this.

I did not return to any neuro for quite some time, I was hurt, scared and fed up. Then a couple years later I started having these weird spasms in my eye with black spots so I went to the eye dr who sent me to an ophthalmologist. MS referral number 2. This time I was sent to a movement specialist, she was about 12 years old, took one look at my eyes painfully rolling around in my head said Ive never seen anything like that and that was the end of that. It went away, I moved on.

Until I had my daughter and the spasms came back again. This time my GP (awesome guy) said this is a new seizure symptom I think, so even though I know how you feel please go see my friend Neurologist. I went he was a great guy that finally actually listened to me diagnosed my eyes as focal seizures based on my history of seizures and diagnosed the seizures as Partial complex despite EEG's all negative. He said sometimes it just doesn't show up. Prescribed new meds which as usual I did not tolerate very well and don't really work. He focused on the seizures though and none of the other bizarre transient symptoms.

About a month ago I started experiencing numbness and tingling in my right leg with pain. I went to the doc. He yelled at me for waiting so long to come in, prescribed some pain meds and zanaflex and sent me to a physiologist. The reflexes in my leg were gone. He dxd S1 Radiculopathy and sent me in for a lumbar MRI for a herniated disc. While waiting for the MRI my leg got a lot worse and walking became quite a challenge, running impossible.

MRI came back a ok. He repeated the neuro exam which I failed brilliantly again and said what I was already very much afraid of. "I think this is MS" I very tearily told him my dad had it and was in a wheelchair by the time he was 40 and he said "now I am even more concerned with it, I want you to see my Neuro friend".  I went to his friend yesterday who was another great doc.

He listened and listened for an hour and a half of everything, went through a slightly more comprehensive exam which again my right leg failed miserably. He also got my eyes to do "the thing". He also said he was very concerned, especially given the family history, that is was MS as well. He ordered the following tests:

MRI of brain and C spine w &Wo contrast
Comprehensive Metabolic
Hemogram
ANA
Anti-DNA
Folic Acid
Hemoglobin A1c
RPR
B-12
Vit D
Mathylmalonic Acid
Antiphospholipid antibodies Ish and Igm
Lyme Titre
ACE levels

He said he wanted everything else it could be ruled out. I go in for the MRI Saturday and follow up on Tuesday. Despite the obvious this is the first time MS has been seriously considered. My Dad was convinced I had it btw, he said I was too much like him with what was going on and seizures can be a presenting symptom although rare.

I am scared what it can mean if I do have MS but I also understand treatment and options are much better than what was available to my Dad so I am trying to keep my head up. My BF has been fantastic and told me if thats what it is we will deal with it, Im not going anywhere so don't even go down THAT worry road.

Thank you all for reading and really for unknowingly being my rock over the past couple wks.
Helpful - 0
Avatar universal
Welcome to the forum.

I've had a lot of bad neuro experiences and read many more here. We've had several long threads in past years about this, including Lies My Neuro Told Me and a bunch more that I hope others will find and post the links to them. However, I have to say that your story of the doctor who grabbed and shook you is the worst I've ever seen. He should have been reported and had his medical license revoked.

Anyway, it does sound as if you've finally found a kind and competent neuro who is interested in helping you. I'm so glad. The blood tests he ordered are all appropriate and could rule out other disorders. The MRIs are appropriate. Depending on all the results, more tests could be ordered, but first things first.

Having a first-degree relative with MS does increase your own chances, but not by a lot. I really know very little about seizures so I'll let someone else comment on that, except to say that while seizures are not often the presenting symptom in MS, that does happen.

Please visit here often and ask questions. It would be much appreciated if you would break your test into small paragraphs. Many here have trouble processing large blocks of text and so may not try to read them and comment.

ess
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