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Tests are all coming back negative. Now what?
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Tests are all coming back negative. Now what?

I had my congnitive testing done yesterday.  The tests did not show any cognitive damage. According to the testing I am in the average range.  I am so confused about this because I have so much trouble putting words together and my memory has gotten so much worse. I don't disagree with the test results I just can't figure out what is wrong with me. I had a sleep study done two weeks ago and I do have hypopnea, that may be part of the problem. I am just so depressed because I don't where to go from here.  I got my eye exam report and there was no optic neuritis. The lesions I have in my brain do not appear to be ms related according to the neuro.  My primary doctor says he thinks I do have ms, but will have to wait for a diagnosis.  I have already been diagnosed with chronic fatigue syndrome.  Next week I see a rheumatologist and may be diagnosed with fibromyalgia according to my gp.  I just don't know what to make of all this. I would just like to know if anyone else had a simular experience before they were diagnosed.
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I want to say sorry that everything is coming back normal but I am not sorry. I am sorry you are having problems, but it is good nothing is pointing toward MS. Remember that not all MS patients have ON. I don't have ON but I do have an upgaze in my left eye. Going to a rheumatologist is good to rule out RA and why does your GP think you will get dx'd with fibromyalgia?

I am not sure how long you have been dealing with all this, but MS is a very hard disease to dx unless it hits hard and strong.

When I had my cognitive testing I was told I had signifigant cognitive issues, that wasn't easy to hear. I knew that I had cognitive problems but to hear them say that was really hard to hear.

I had symptoms for about 6 years before being dx'd this past September, but I have only been seeing a neuro for the last 2 years before my dx.

I hope you get to the bottom of what is going on so you can get some relief.

Paula
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Thanks, I'm sorry to be so negative about all the testing, I am just frustrated.  I am happy that it doesn't look like I have ms, but at the same time would just like an answer.
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Lydia,

I understand, we have all been there and done that. I was relieved when he finally told me I had MS but then reality hit. The hardest part is not knowing. Hang in there you will eventually get the answers you are looking for and deserve. :)

Paula
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1466984_tn?1310564208
Hi Lydia,
Sorry you are going through this.  It is so frustrating to feel bad, and not know why.  

I was dx in Feb, then wanted a second opinion.  This neuro was not so sure I have MS - but he can't find anything else wrong - so I am staying with my first neuro's opinion, and staying on meds.

I had  a "mini" mental status test - and the 2nd neuro told me I did so well that he couldn't recommend a neuropsych test.  That's great news - except, I know that things are harder for me than they used to be when it comes to focus, concentration, memory -  I know .....others don't see it - but I KNOW!  Everything I do takes more effort - both physically and mentally - and over the course of a day - it wears me down.

So - yes - I'm sure there are many of us who have similar experiences in trying to figure out what's wrong.  That's why I love this site.  You know you are not alone in all of this - there are people who understand.

Hang in there and keep going until you get some answers.  One step at a time.
Good luck and happy holidays.
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I have to say, even though I am not dx with ms, I have the cognitive issues as well.

It's pretty sad when your 7 yr old asks you what gl. stands for and my answer was, I don't know Gram Liter???? Duh!!! He said, " Maybe gallons??" I was like OMG, yeah, that's it! LOL

I felt sooooo stupid!!
Pamela
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987762_tn?1331031553
One of the problems with cognitive testing, is the assumption that you are normal and of average IQ to start with, unless you've already had IQ testing and know what you should be, then the results (unless below average) can only be used as a bench mark for future testing. Each sub-set has meaning, scores are pooled together to come up with the overall score, you may have a high score on some sub-sets and low scores on other sub-sets.

When you put these highs and lows together, you come up with an average score, basically flattening high scores and raising low scores to garnish the final score. 1 standard deviation is equal to 15 IQ points, a loss of 1 standard deviation is significant but doesn't stand out as much unless your score drops you below average, remember your assumed to be of average IQ.

Warning: IQ scores can sometimes be confronting......

Wechsler's classification IQ Range ("Deviation IQ") Intelligence Classification
130 & above Very superior
120 - 130 Superior
110 - 120 Bright normal
90 - 110 Normal
80 to 90 Dull normal
70 - 79 Borderline
50-55 to ~70 Mild mental retardation (MR)
35-40 to 50-55 Moderate MR
20-25 to 35-40 Severe MR
<20-25 Profound MR

The above are from wiki but i note they are slightly different scores to my pletheral of text books on the subject, the below are easier to read, note the incrimental 15 points. Normal IQ is comparitably a large range of 1 standard deviation below normal and 1 standard deviation above normal, 85 to 115. Falling anywhere in that range is classed as normal or of average IQ.

70 Borderline
(less than 1 person out of 100,000)
85 Lower normal
100 normal - average
115 High average or bright
130 Gifted
145 Highly gifted
(approx. 1 in 1,000)
160+ Exceptionally gifted
(approx. 1 in 100,000)

I have one of the lowest IQ's in my family, brother, mother and son have IQ's in the exceptionally gifted range of 160+, mine was in the highly gifted range of 145+.  Just a simple truth or fact that I informed the tester of prior to starting, competance of the tester plays its role in the equation too. I am well aware of the probability of a young neuro-psychologist never before having the experience of testing people with high IQ's, due to curcumstancial events maybe but still another simple truth or fact.  

I was more than aware my IQ had taken a wollop, you dont loose all nouns and I do mean all nouns and not notice, you know, something IS wrong, very wrong! At completion of testing, i was informed I fell into the normal range so there was nothing wrong cognitively. Seriously he was not kidding, he believed it, I dispute this as does our family 'gifted' psychologist, I have lost 2 to 3 standard deviations (30-45 IQ points), which is SIGNIFICANT!

Think about it, if i originally had an IQ of 100, a big loss of 30 to 45 points would have had the alarm bells ringing loud and clear but if your starting point is a lot higher than average then that big a loss, is some how what, no longer significant. wtf!

Sometimes a normal or average conclusion does not mean something is not wrong!

Cheers........JJ



  
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Thanks for all the comments. I know something is wrong with me cognitivley speaking.  Everytime I try to get words out and it seems like the words have to be forced out like I have a mouth full of pudding. Everytime I am in the middle of a sentence and completley forget what I was talking about and everytime I can't remember the right word to use and I have to try to explain what I am trying to say. It is so frustrating and slightly frightening.  I keep thinking that If all the tests are coming back in the normal range, that means I must be crazy. The only thing is that being crazy doesn't explain all the physical things.  

I am going back to work January 3rd and have to just get back to being "normal". How do am I going to do that? Nobody seems to understand, they just say things like "I know what you mean sometimes you just have to take one day at a time". This is so much different than that! Taking one day at a time was what I used to do before I lost the ability to generate a normal sentence and wasn't in some type of pain all the time. I'm sorry to go on and on, I am just a little stressed out about all of this.

I am also having alot of stress outside of my medical concerns. Three years ago when I had cancer I had to take eight months off work for treatment and recovery. During that time I had to take out a second mortgage on my home at a very high interest rate (18%). That was the only loan available to me as I was not working and behind on my bills. After I went back to work was so behind on bills and now having a second mortgage to pay, could not keep up. Anyway after trying to work with both mortgage companies unsuccesfully, am about to lose my house.  I have been trying to short sale the home and have had offers, but the bank has not approved the sale yet.  In January the house will go up for auction if it is not sold. Either way I am out of a house and have to find a house to rent. So many worries about money and who will rent to us with bad credit. I think this is one reason why I had this last medical episode and maybe why it has lasted so long.
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Word expression is a funny thing,  If you can write the word, but not speak the word, that is significant.  It points to Broca's area of the brain.  That is not a cognitive issue.  Its one of the things you see working with stroke patients.  

When you talk about forcing a word, it sounds to me like you know the word, but are unable to vocalize the word.  It make me thing you might be able to write or even sing the word, but not speak it.  Give it a try.  If it works, you might be looking at a neurologic event in Broca's area.  I know it sounds like a goofy neuro test, but there is some science to back this up.  Think of someone like Mel Tellis who stammered when he spoke, but not when he sang.

Bob
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I dont know if your aware but there has been an established link between cancer and cognitive changes. Have a look at this site, scroll down and read the 'cognitive changes' information, you might find some answers there.

http://www.livestrong.org/Get-Help/Learn-About-Cancer/Cancer-Support-Topics/Physical-Effects-of-Cancer/Cognitive-Changes

I am sorry your loosing your house on top of everything else, I do hope it works out better for you in the end, though i'm sure there is little anyone could say to comfort you, but I am sorry this is happening to you!

Take care.........JJ
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987762_tn?1331031553
Word retrieval problems are a common issue in MS, google it and you'll find so much on the topic and it isn't the same as stroke etc. there isn't a single link established with MS, its a combination of issues. UCSF multiple sclerosis centre mentions.....

"Language The types of language problems most commonly seen are those related to language fluency. These include increased word-finding difficulty (where either the person with MS cant find the word they want to say, or where they say the wrong word accidentally) and problems with naming, the ability to accurately recall uncommon words or the names of acquaintances. People with MS can also have problems with dysphagia or dysarthria, which refer to problems coordinating the movements of the lips, mouth, tongue, and throat. People with these problems may have slurred speech or physical difficulty saying certain words or syllables, without any cognitive problems at all."

MS society.....

"It is fairly common to hear people with multiple sclerosis (MS) complain of problems remembering things, finding the right words, concentrating on a task or something they are reading, or following a conversation. These are all cognitive symptoms of the disease.
Only a few decades ago, cognitive impairment was considered rare in MS. We now know that 50–65 percent of people with MS have some cognitive problems.

The overall cognitive problem in MS can be described as a reduction in mental “sharpness.” The major areas of cognition that can be impaired in MS include what are termed complex attention and executive functions. Complex attention involves such functions as multitasking; the speed with which information can be processed; learning and memory; perceptual skills. Executive functions include problem solving, organizational skills, and the ability to plan; and word finding."

When I really noticed the problem, it was after years of loosing peoples names, it always seemed to go back to almost normal so i made excuses for the lapses. There were no logical excuses to not being able to name my husband, mother or children, which is what happened during a rather big expisode. I knew who they were but not what they were called. I tried writing it but still nothing, I found I needed to describe what I wanted to say and often the word would pop back into my mind.

I needed to give my brain time to catch it again, though a lot of time people supplied the missing words for me, I was also stuttering and slurring my words for the first time in my life, so sometimes it was a long drawn out process. I created many games i played on my own, i didnt seem to have as much of a problem thinking and naming but as soon as I tried to verbalise I was back to describing. I'd think 'traffic light' but loose the name as soon as I tried to say it, i'd say "it stops the cars, its on a pole, its now green so I can go" etc. ahhhhh frustrating at times but frustration made it worse so staying calm and working out tricks helped me get back to communicating again.

Executive function is definetely a problem here, I can't walk and talk lol

Cheers.........JJ



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I do know that there are things other than MS that can cause brain lesions. My neuro told me that even vasculitis can cause brain lesions,and brain lesions can cause many symptoms even cognitive problems. So it might not even be MS. They have even found that celiac desease can cause brain lesions!
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1394601_tn?1328035908
On Thanksgiving Day four years ago, my neuro called with the good news.   I didn't have MS.  Now at the time, I didn't even know he had considered MS but it sounded like good news to me.  Yep, I had a pinched nerve in my neck.  So, after treatment for the pinched nerve which caused me to lose bladder control, caused me to be unable to walk any distance, caused my eyes to blurr, and caused the most awful of lower back pain.....then caused me the use of my dominate hand, I got mad enough to find another neuro.  Who, by the way, called two days later with the bad news that it was MS and had me in treatment the following day.

My advise is give the doctor a good chance to figure things out.  If after a year nothing is getting better move on.  Find another.  Don't wait for the damage to to done to your body with their "good news".  And by the way, yes I had also visited every specialist known to mankind and had three visits to ER (two by ambulance...heat related) and not one found the "bad news".  Don't let the medical professionals beat you down until the fight inside of you for an answer is gone.  
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The other bit of advice I can give is to see a Neurologist at a hospital outpatient clinic.  A teaching hospital is even better.  An hospital outpatient Neurology clinic collocated with an MS Center is even better. It has more to do  with these doctors keeping up with the latest information in diagnosis and treatment.  

My experience at  Rocky Mountain MS center is that the docs were more concerned about the location of the lesions (not the number) and the damage to the optic nerve and tract.  Once they had enough for dissemination in space and time (in my case two attacks and two mri's showing more lesions) they were more than willing to discuss the diagnosis of RRMS and a treatment plan.  It seemed almost trivial compared to some of the stories I have seen on this forum.  It still took 8 months.

I kind of got lucky, because a transferred my care from a neurologist out in town with a complaint of "Optic Neuritis & Rule out MS or other."  So the Neurology Clinic assigned me to one of the Neurology Fellows under an experienced MS specialist.

I'm not sure that is the best way for everyone, but living in a large metropolitan area with a big MS population, that's the way I did it.  On a side note, most (not all) of the people being seen at the weekly MS clinic were still walking.  Some with one or two canes, but still walking.

Bob
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1453990_tn?1329235026
JJ,

I'm pretty aware of the difference between cognitive retrieval and language expression issues.  They involve deficits in very different areas of the brain.  Several folks on this forum have posted about the lesions in the posterior lateral horns of the frontal lobe.  This can be Broca's area and damage in this area causes a failure in speech production. Anomic aphasia (word on the tip-of-the-tongue) has been mapped on fMRI to damage to the frontal and parietal lobes of the brain.  There are specific subtypes of anomic aphasia. Broca's aphasia is a failure in language expression where something like averbia seems to be a cognative recall issue.  Since many MS patients often have damage in these areas, I'm not surprised.  

What I was mentioning is not amonic aphasia.  It is more that cognitive memory is intact, you can remember the word, but you loose the ability to manage vocal cords, lips, breath control and tongue position to verbally say the word.  It is a very specific  defect linked to a very specific area.  Anomic aphasia is a general term.  You have to identify the subtype to figure out the area.  

Most of the stuff on the MS sites is for the folks that have never worked in medicine.  They tend towards the simple answers that, while not incorrect, answer the general case. This where we start to complain about some of the the neuros out there.  Ask the wrong question; get the wrong answer.  If you ask specific probing questions (Can you write or sing the word, but not say it?,) you can get pretty precise information about the area of the brain that is effects without an MRI.  A little more precise than saying, "Language issues = defect in frontal and/or parietal lobes"
Do a search on "Broca's Area" and "Anomic Aphasia".  The medical terminology will bring back more specific data than you will find on the MS site.  

Bob
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Lydia,
One word comes to mind with me when reading your problems ............. STRESS.  All the above explanations may or may not fit what is going on with you.  But my goodness, woman, look at all you have gone through in recent years

-cancer
job securtiy concerns
rising debt load
cancer
unidentified health problems
facing foreclosure on your home....
stress navigating the medical system

need I go on?

The more we put pressure on ourselves to perform, the worse we do for most of us unless we are mentally  superconditioned.  The harder we search for that word on the tip of our tongue, the more likely it is we swallow it completely,.

As we push ourselves, if we are already full of doubts I find it compounds/intensifies the problem.  I am speaking from my own personal experiences, including using the entirely wrong words at times and even speaking in a totally gibberish language.  (that was frightening and then funny because neither I or my husband had a clue what I was saying for a good 30 seconds or so).  

Surely this sounds simplistic to others here, but I would hope for you that you can find time several times a day to focus on you - something that makes you happy, something the helps you relax.    Sometimes there are very simple answers to complex questions/problems and I hope that is the case here.

I'm so sorry that you are faced with these problems -

Lulu
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I also meant to add that I have never had ON - my eyesight is pretty darn good if reading glasses don't count.    And my optic nerves show no signs of scarring.  Everyone's MS is so different........
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well - me too  they -put me off- i dont know why- well you can go for years with out another symptom. plus if its not ms- they dont want anyone to sue them- i was very frustrated-thought i was nuts!-well- ha!!    one time they told me i was on the borderline for ms??
  maybe there is such a thing?   but dont let it eat at you, if symptoms get bad- find a specialist!!     -but dont give up-  you are not crasy-   hugs  tick
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338416_tn?1260996698
>  What I was mentioning is not amonic aphasia.  It is more that cognitive memory is intact, you can remember the word, but you loose the ability to manage vocal cords, lips, breath control and tongue position to verbally say the word.  It is a very specific  defect linked to a very specific area.  Anomic aphasia is a general term.  You have to identify the subtype to figure out the area.

Hey, Bob - I'm not sure if this is Lydia's problem or not, but my problem with language essentially is that I just can't think of the word.  I know what it looks like and what it does, but the word for it is gone.  I had a bad three months or so after my first flare when I didn't talk very much, because I could never think of the words for what I meant to say.  Plus putting together simple sentences was a lot of work!  Then when I started to get language back, it was all jumbled - I'd try to say 'hotel' and end up saying 'telegram.'  And the weirdest thing is that I didn't know I was doing it.  There was some sort of disconnect between my conscious brain and the bits that operated my mouth.

I also have a problem with losing track of where I am in the middle of a sentence.  Forgetting what I was talking about...  or even worse, forgetting what my hubby's talking about.  I can't always figure it out and have to stop and ask him.  

And the mouth full of pudding thing... that could be muscle control of the mouth.  Which I've also had difficulty with.  Parts of my mouth have been numb, especially my lips and tongue.  It's hard to enunciate clearly with a floppy mouth!  My speech is sometimes slurred, and I have to really work at being understood.

I can also relate to Supermum's comments about IQ.  My neuro-psych exam showed that I tested high average.  The last time I took an IQ test, it was 135.  So essentially I've lost 30 IQ points.  Even though the exam showed only mild cognitive problems, I know there's some deficits.
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987762_tn?1331031553
Oops, sorry Bob, i'm not sure why I headed my post directly to you, I didn't even realise I'd put anyone's name in the 'To' box, sorry if you thought i was trying to correct you or something. lol i really wasn't thinking that way, ohhh you must of been on my mind (wink wink).

I was simply following on from your post, but adding the point that it isn't necessarily one specific definable issue but can be (or not) a combination of issues. Fortunately cognitive memory doesnt have to be affected, regardless of the specific issue, it still feels like your loosing your mind. I am generally unflappable but loosing my mind is seriously my biggest fear!!

Sometimes isolating what your problems are can help in finding ways to circumvent or help you deal with it better. I know in my own situation that word retrieval is just one of many individual components, there causations are not necessarily related to each other. I would say my drop in IQ is not due to cognitive memory deficits but because of deficits in executive function, processing speed etc basically combined they are negatively effecting my attentional abilities, word retrieval and there is also the component of mental fatigue as well as physical fatigue pulling down my overal score. I know that my lowest score was at the end of the testing, which had more to do with fatigue than a true deficit.

From my perspective I have two language expressional issues, both happen in isolation or at times combined, seperate causation. One is the intermittent word retrieval issue that is not connected to articulation difficulties. I even know what the first letter of the word is, its meaning, even alternate words etc but i'm unable to continue the natural flow of communication. The word is litterally there one second and gone the next, often the missing word will return if I give my brain a few seconds to reboot.

The other issue is the inability to get my mouth to articulate the sounds, this happens due to muscle control of my tongue and throat and or probably a totally seperate issue again but sometimes the difficulty I have talking comes out as a slutter or slur as if my brain is temperarily sticking but could simply be my oral control sticking.

Somtimes despite what the cognitive assessment is indicating as being 'normal', normal ain't always normal, certainly not my normal! lol

Cheers.......JJ

PS 2 hours to write this and i'm still not convinced it makes sense sorry!
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Avatar_n_tn
after my stem cell transplant and chemo and going on meds like Lyrica I had difficulty finding my words, and would stutter on words.  And sometimes describe the thing I was trying to find the word for for others (kind of like a long way around) and have them say the word.

A few months later i'm not on any meds now, I seem to have recovered a lot of my language, I am in the "gifted" range when they tested in school... or at least I used to be.  
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