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1493284 tn?1294875712

New to writing, not to reading

Hi, Everyone.

First, thank you, all of you, for all the help you've been giving me without even knowing it.  I've been reading lots(contrary to doctor's orders-- apparently if one researches one's body one is obsessive) and these pages have offered some of the most valuable information and reassuring support.

I am a 30 yr-old caucasian female with two children through foster-adopt(the only reason I make this distinction here is this for medical relevance-- Five years ago I started having unexplained miscarriages, and eventually had two positive tests for antiphospholipid antibodies in the midst of them. Treatment with aspirin and heparin never helped. Ultimately I had 7 early miscarriages total.  With the arrival of my oldest daughter, who was medically fragile, I happily stopped seeing doctors and focused on her medical needs, adding a daily baby aspirin to my morning routine and forgetting about sitting on tables in paper gowns).

Other than miscarriages my only other health issue has been severe major depressions. I've been medicated for this since I was 16 and have learned to manage them pretty decently through the years.

Anyway, this summer, I started feeling "earthquakes" through my legs. Realized nothing else was moving.
Started becoming extremely fatigued, to the point of needing to be horizontal. Felt self dragging. Felt simply soaked in fatigue- it wasn't abating with rest. Was markedly different than fatigue with depression-- the desire, the need to do things was there-- I simply physically couldn't.
In September of this year, noticed feet started going numb, starting with toes, even while walking around barefoot.
Noticed lots of involuntary muscle contractions while laying down, esp in feet. Sometimes clenching, sometimes shaking.

Was referred to rheum because of history. Rheumatoglogist said based on history, felt I was for sure in remission for some kind of "autoimmune activity," but also, based on exam and bloodwork,  that it certainly wasn't active now.

A week later there was one 36-hr period where the numbness became very severe and didn't abate. Was as though feet and legs were novocained, as well as one arm, and eventually the other arm as well.  Was as though legs were "alive" at the same time, carboonated and fizzy. Limbs felt large and fuzzy. Felt like they didn't belong to me and were very far away. Kept hitting them to try and "feel."  Needed railing on stairs. Suddenly couldn't pick up the baby.  During this same period was having trouble emptying bladder. Would have the urge to go, would sit down, and-- nothing. Was like the connection was faulty. Extremely uncomfortable. Pressed on bladder. Would usually eventually "dribble" something but never felt like I had gotten it all out.

Went to ER as numbness was subsiding. Neuro noted hyperactive deep tendon reflexes, decreased vibration on toes, positive Hoffman's sign on right hand. Neuro ordered brain and spinal MRI with and without contrast, and a zillion blood tests. Said she wanted to do an LP as well. She left.

Had MRI. ER doc came back and said, "You don't have MS. No lesions. Also, no cord compression. Your MRI was totally normal, but neuro wants to admit you."  He implied the LP was a shot in the dark, that nothing else was coming up on bloodwork, including the aPLs I'd "said" I'd had.   Implied the reason she wanted to keep me was legal liability, not medical. Numbness was subsiding and I could pee without issue again so  husband and I decided to leave AMA, with promises to follow up with neuro in office.  For absolutely no good reason I felt embarrassed. Like maybe I was a hypochondriac. That they weren't going to find anything, and meanwhile people with REAL medical problems were going without care all the world over.

WHY-OH-WHY did I leave?  Because I didn't know about what 1.5T machines can miss, that there was a good, valid reason for an LP, that the neuro wanted to do sensory testing and have all kinds of consults. That I was now testing negative for aPLs-- the only thing showing up on bloodwork was a mildly positive ANA. I didn't know how awfully hard it is to get into see a neuro, that the one I saw in the ER and liked very much didn't take my insurance.

Went home and struggled with insurance company. Rheumatologist reiterrated that this wasn't autoimmnue, but neurological. Struggled to get in with neuro. PCP made some calls.

Two weeks later Neuro number 2 gave me the most cursory of exams. Didn't look at my labs or MRIs. Was patronizing about my reflexes being hyperactive, handing me the mallet and running to the door. He all but petted me on the head. Sweetly told me everyone has muscle twitches, was condescending about the other neuro, implied she was "overzealous."  Said if my parathesias were signficant, I would be feeling them all the time, not on and off.  Neuro # 2's Diagnosis: migraines. Never mind that I don't have any history of migraines. But if I wanted to schedule an appointment to come back, THEN we could look at the MRIs.  

So I go home, cry angry, helpless tears, and start having trouble typing sometimes, my fingers feeling "rubbery" and weak. My legs keep me up at night with their sometimes stabbing pains in the toes and the feeling there is a "Zoo" contained in them with all the tingling and shaking. Once when I'm driving it feels like something is stinging or biting my toes, and I have to pull over and look down and nothing's there. My ears ring on and off. Sometimes it feels like I'm walking on a boat that's floating in water instead of solid ground. I go to the opthamologist for a check-up and he finds 20/15 vision but significant visual field loss. I am retested a few weeks later. It's still there.

Neuro Number 3 opens my MRIs on his computer and goes, "A-ha! There's one. There's one. There's one." He scrolls through super fast and blithely points out white spots. I hadn't seen my own MRIs, and I am startled he's seeing anything; the radiologist wrote "totally normal." on all three reports-- not just his impression, but in his description. He mentioned no hyperintensities or foci or anything.  Then Neuro #3 does a very thorough clinical exam. He notes that I am strong, that there's nothing wrong with my walk, and that I "sure have written a lot of symptoms down." as though I get my kicks from making his life complicated.  A)They're all there. B)I thought you were supposed to be thorough. Anyway, the exam continues. "Interesting," he says.  "You have no abdominal reflexes." I ask him what this means. He says, "Probably nothing." I ask him what can cause this.  He says obesity(I weigh 110 lbs), or multiple pregnancies(never got beyond 8 weeks), or abdominal surgery(no.).  I push him a bit on this, but don't realize the possible signficance until I get home and read that approximately 2/3 of MS patients don't have abdominal reflexes.

Then he says, "I agree with the radiologist. Normal MRI." I ask about all the "spots" he pointed out before. He says, "We see that with normal aging." (I am all of 30).  "Or with Migraines" (I've had maybe 3 in my life-- all mild).  Then he says, "with all of your symptoms, I would expect to see a scan much worse. So it's not bad enough to explain your symptoms and therefor not the cause of them. Also, you're not old enough for primary progressive" (huh?)

He says that in order to make me feel better he'll order nerve conduction studies, but wants me to know they take hours and they're going to come back normal.  Then he says if I REALLY want him to, he'll do an LP, even though that's going to come back normal, too. I try to explain how I don't *want* a spinal tap, but--- anyway, we agree on doing the sensory tests first.

Good grief! This diagnosis thing is not for the faint of heart.
Thank you for listening.




9 Responses
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1493284 tn?1294875712
Hi, Sho!

Yes, they've tested them a few times recently.  In fact, when all of this first started I assumed Antiphospholipid Syndrome was to blame but the rheumatologist is emphatic that all clotting factors/antibodies are coming out normal.  The only thing they can find is a borderline positive ANA(Anti nuclear antibody).

Good times, yes?

Sadie

Helpful - 0
333672 tn?1273792789
It does sound like you need a new neuro. Have they re-tested your antiphospholipid antibodies recently? I only ask because there's something called Hughes Syndrome that is a blood clotting disorder that is a very strong mimic of MS. Here are a couple links

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=736

http://www.hughes-syndrome.org/diagnosis.htm

You can also find a few posts if you search the forum for this.

sho
Helpful - 0
1493284 tn?1294875712
Thanks, Zenhound.  Another doc of mine thought it might be the Neuro's style to play everything down so his patients don't worry.  

Since he agreed(actually, he offered) to the tests I think I'll stick with him for now and let him get to know me as well.

lol. Like I have a huge choice with my insurance, but still :)
Helpful - 0
1257156 tn?1269457869
I'd advise seeing the neuro at least once more to see if you get a different feeling from him. The first couple of times I saw mine I got the feeling she didn't believe me. She would say things about how anxiety can exacerbate symptoms, etc. I felt like maybe she was dismissing me. But this last appointment with her, I got a totally different feeling. I felt like she believed me and was working on helping me how she could, but that she wanted to keep me from too much worry until there is more evidence. I feel like sometimes people can come off in different ways on different days.

On the other hand, it seems like there is a lot of evidence to support something being wrong with you. Especially if he is seeing lesions, I would think he'd be wanting to move forward on other testing. It's always a personal choice as to what to do. If you feel like you're being dismissed it might be worth it to try another neuro.
Helpful - 0
1493284 tn?1294875712
I agree. I don't need a diagnosis, even, if one can't be given. I just don't like the feeling that I've been reading more than a given doctor on a certain subject, and how I play dumb listing symptoms, hoping s/he will make the connections, paranoid they're going to think I read them online and decided to add them to the mix.

It's like when I had recurrent pregnancy loss-- as soon as the usual stuff didn't add up nice and neat and their given theory and subsequent treatment didn't hold weight the specialist would come up with a vague reason and essentially drop me. The only one who remained faithful, invested,  and who made me feel human was my ob.
Helpful - 0
1493284 tn?1294875712
Thank you both for responding. I wondered if that was too long and then I remembered that I always appreciate such details in trying to untangle this whole mess. :)

I don't think I'm an easy case, certainly not with the pregnancy loss, the past history of aPLs, the images that aren't textbook, etc.  But for Pete's sake-- migraine?  I'll have to check, but I don't think any of my friends who deal with migraine ever had bladder issues.
Helpful - 0
338416 tn?1420045702
Personally I think you should make him put you through the wringer.  Get all the tests done - LP, VEP, EEG, everything that could possibly show some nerve damage.  Small hyperintensities are not normal, but aren't enough to lead to a diagnosis - unless you have a history of symptoms, as you do.

The other option is to find yet another neuro.  The problem we all have is to find a neuro who will treat the symptoms, even if he can't find a cause.
Helpful - 0
1253197 tn?1331209110
I don't really want to welcome you here because you wouldn't be here unless you had some serious problems. But here you are, and you are among friends.

Thank you for taking the time to tell us your story as it gives everyone a much greater understanding of what you have been through and also enables others to empathise on a deeper level who have been through similar experiences. I think you will find that there are many other limbolanders who can really understand what you are going through and I have been really amazed at the stories that others have shared about their bungled (is there such a word?) neurological appointments.

So all I can say is welcome, you are in very good company on this wonderful forum and don't stay hidden, we are all here to support and help each other.

Best wishes and a hug

Sarah
Helpful - 0
Avatar universal
i feel for you because i am in the same boat as you, except for the drs. never went over my films in front of me, so I dont even know what they interpreted other than their statement " you do not have ms" . i have all of the symptoms and signs and have the hyperreflexes, but they never go anywhere with it. I am on my 3rd neuro.
1st neuro dx. TIA ( I was 36) heart tests all good
2nd neuro dx simple partial seizures ( based soley on my slurred speech lasting 2 weeks long) but all 4 EEGs have been abnormal
3rd neuro dx anxiety and too much coffee ( l love that one) lol

I am still seeing neuro #2 because he seems to be realizing all of my symptoms are fitting the puzzle alittle better, everything else has been ruled out, and eventhough I have graves disease, my levels have proved that my symptoms are not related to that at any given time.

I hope and pray for you and maybe with any type of miracle we will get our answers.
take care,
Pamela
Helpful - 0
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