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lydia

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Hello All,

I am still irritated so I will try to keep this short. I had my follow up with my neuro (recall at first visit she spent a whopping 15 minutes with me before scheduling me for a slew of tests and then writing in report the differential was MND, PD or muscular disorder). This time she spent FIVE MINUTES.

She said the SPECT indicated no parkinsons or motor nueron disease. Wait, let me describe that better.....she patted my knee and said while grinning, "no parkinsons, no motor neuron disease." I tried to ask questions and she did not look at me but kept reading my test results (for the first time apparently).

While there my right hand was shaking/trembling/moving in a way I have never experienced...a tremor perhaps (by the way, it is my LEFT side that is problematic....). I was morbidly excited it was doing that while in the office...the doctor would actually see it! I showed it to her by shoving it between her face and my records and she again patted my knee and said while grinning, "benign fasciculation syndrome."

Realize none of this conversation on her part is in full sentences, just fragments. English is not her first language and I felt as if I was having a conversation with someone who couldn't understand me and who was not up to speaking in full sentences. This WAS NOT an issue during first appointment. It was surreal.

Then she said something about low B12 and wrote a "script" for over the counter B12. I tried to ask will that make me feel better, that I feel awful (the cramps, the stiffness, the soreness, the overall fatigue). She said yes. Then she said something about "ischemia" and that I could chew a baby aspirin (she didn't say how often)...by then I had given up in frustration. She was doing the "walking out the door backwards thing" by then. I said to her back, "so is that it then?" and she replied, in a full sentence, "I have given you the whole panel for {something neurological}. That is all I can do" (and to come back in 8 weeks).

So in summary, I did learn that SPECT can indeed indicate patterns that suggest motor neuron disease or parkinsons, and that fortunately at this point in time I have no such patterns (from my report: "I am not seeing any profile suggestive of motor neuron disease or idiopathic Parkinson's disease or parkinsonism inducing disorders") (But Suzannj-I know what you mean...did I just go too soon?). But how interesting for those searching for diagnosis; maybe ask for one? They seem to be in larger cities, especially if there is a university or medical school nearby.

I learned that my b12 is low (310; that is low?) and that I will (supposedly) feel better if I take some.

I learned I have benign fasciculation syndrome (by the way, she didn't define this, she didn't tell me how it relates to my complaints, she didn't even tell me what 'fasciculation' was....of course I DO know because I frequent this site...)

I didn't learn anything about "ischemia" until I got my records today. She said in visit something about me chewing a baby aspirin as if it was something utterly unimportant, she didn't explain the term ischemia at all...I didn't even dwell on it. BUT then I got my records, and at the risk of being vulgar...what the hell does this mean: SPECT perfusion study is abnormal. ...Active ischemia on a small vessel disease basis in the anterior temporal lobes, white matter and diffusely in the cortex with the worst changes in the white matter...This likely represents global brain impairment and it is suspected to be small vessel disease.

Please tell me this just sounds awful...really, how bad could it be if baby aspirin helps? And could whatever this is be connected to my original issues that prompted me to visit doctor to begin with (cramps, twitches, soreness, stiffness, weakness, slurring and neuro discovered mild atrophy) or is all of that explained by allegedly low B12 and "BFS"?

I meant to keep it short. Thanks for reading, especially if you made it to the end.

Lydia
 

rose

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Lydia, I feel your frustration! You did not get an adequate explanation of anything. I don't know what the abnormal test results mean. I'm no help there. But her not explaining anything to you is inexcusable. You do need to pursue it and find what it means. From what I understand small vessel disease is caused by or causes small strokes? It isn't MND at all, and I don't think its a demyelinating disease.... Do you get migraines?

I really am so sorry you had an appointment like this. At least you have your test results. You probably don't need to find a good neuromusclular doctor, but rather a neurologist that specializes in small vessel disease, or maybe stroke? Absolutely you should follow up with someone other than her.

big ( (( hugs)) )

I'm sending you a PM with a link that you may find helpful (and it talks about arm swing in it, was it you that was asking about arm swing, or the lack there of?)
 
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sdsyd

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Oh Lydia! I am so sorry for more " No concrete answers!" I feel your frustration.
My B-12 was 182 and then 212 and am treating with B-12 injections. There are lots of information out there about pernicious anemia. Did they check to see if you are absorbing it? Are your RBC's enlarged?
Just try to hang in there until all the pieces of the puzzle come together and know that there are MANY people in similar situations and experiencing the stress.
I am faithful in my prayer and I will pray for you.
Love,
Cindy
 

awieleba

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HI Lydia,

I totally understand, kinda how my appt's go, but I am told see a therapist. It is sooo frustrating. Maybe 'wright' can help explain the test result. It does not sound that bad, really. Maybe vasculitis? What do I know? I would make an appt with anther neuromuscular doc to get an explanation. BUT, she must understand what you have and not think it is all that bad or would have said something?

***question~do you have pain in your temple or jaw? I do, and It started with headaches and then just in my temple. Then it is in the temple and kinda like TMJ or something, it extends all down my jaw and neck from on my temple. IFelt above my ear and it was inflammed, like a vessel or something? It was wierd and painful! I have lesions on my white matter. But no real changes in the last 4 yrs.

april

ps. my b12 was abnormally high~880. what does that mean? I am no supplements
 

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Hi Lydia! You have just experienced one of the most frustrating neurology appointments on the planet! :( Unfortunately, this is not all that uncommon!

Please for you own sanity, find another neurologist that speaks English! He/she will be able to make sense of the SPECT report regarding 'ischemic' changes.

Low vitamin B-12 can cause a host of neurological dilemmas.

I hope you can get all these issues resolved very soon!
 

suzannj

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Lydia! OMG! I want to go and wring her neck for you! How.....RUDE! "Exucse me, I'm sick here please, and you happened to have gone to school for this and I didn't so can you please take me seriously!" Too bad we all don't have the right to not pay their bill if the service is bad!

(deep breath here) Okay. So you and I live in the same city, and to sum it up: My neuro (Dr. Bennet Myer) was THE ABSOLUTE POLAR OPPOSITE OF YOUR EXPERIENCE. Maybe try him if you're going to see another doctor? If you happend to have ever heard of Dr. Mehmet Erk, I told Dr. Myer that he was "very Dr. Erk-esque" and that it was the greatest compliment I could pay him.

I don't know the answers to any of your medical related questions, but as we all know Google is a very useful tool. If you read my most recent post, even though Dr. Myer was very kind and took ONE HOUR WITH ME on my first visit (see, I told you it was the opposite! LOL) with the way my body is acting, I'm having a considerable amount of trouble truly believing that what I "have" is nothing more than BFS.

IM if you like, or my Yahoo address, or just re-post here if you want to talk.
Try and have a good night.....making a voo-doo doll of that doctor! :)
Suzann
 

BethU

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Hi, April ... I just wanted to make sure my memory's right. You do not have ALS, isn't that correct? Or did I miss something?

I'm only asking because sharing your symptoms like headaches, pain in your temple and jaw, issues with white matter in your brain, etc., might lead a newcomer to think that those are symptoms of ALS, when in fact, they're not.

I certainly hope you have not been diagnosed with ALS!

Take care,
BethU
 

awieleba

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No, I have no diagnosed of als at this time.

I was just asking if she had ever had those, as I do and wonder if anyone else has. I dont know they are not symptoms of als, or if they are. I HOPE that by having these it would mean that there is something else going on. The forum is "is this als' so I assumed that any symptoms or questions were not 'assuming' that I had als. IF it appeared that is what I ment, it was not. She has no diagnosed of als, and nor do I, so that is why I said I can relate to her.

I never said that my jaw/temple pain were symptoms of als, or that my mri was. I was just asking a question to her becasue of the test that said ishemia and inflammation in small vessels of temporal viens and wanted to know if it was in the temples, I have had pain there. I was brain storming with her.

I guess I should not reference my symptoms at all. Or preface with the fact I have no diagnosed.
it seems that I am taken the wrong way alot. I just try to be relatable on this part of the forum, because us here dont have a diagnosed, but have some REAL issue's going on.

Sorry
 

planningguy

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Lydia,

I am sorry that the neuro visit did not go well. I have had similar visits with my PCP, and it was part of what made me pursue the neuro on my own.

When I was diagnosed with pernicious anemia my B12 level was in the 180's as well. There is a bit of debate about where the cutpoint should be for clinically significant B12 levels. An ongoing study of B12 deficiency tracked by the USDA used 258 picomols per liter as "low normal"(An important thing to keep in mind when reading about B12 deficiency is that it is also measured in picograms per liter where 258 picomols per liter = approximately 350 picograms per liter). However, it is reasonably well documented that individuals can begin to experience symptoms with levels in the 300-400 pmol/l range. Symptoms include fatigue, tingling, muscle twitches, and congitive impairment.

I want to reenforce what Cindy said about pursuing pernicious anemia. With pernicious anemia the focus is not how low the B12 level, but why it is low. In pernicious anemia the body lacks the intrinsic factor necessary to properly absorb B12. The most common cause is that the body produces an antibody that attacks the perietal cells in the digestive system. Since the body's natural stores of B12 can last 3-4 years, symptoms might not emerge until years after the event that triggered impaired absorption.

There are two significant reasons why you want to pin down your low B12. One is that if you do lack intrinsic factor, you will not be able to build your B12 back up with oral B12. You will need to receive regular B12 shots. These are dirt cheap, and easy to self administer. Second, pernicious anemia often runs with other autoimmune disorders, and may help guide your doctors in the direction they need to go.

April, while a measure of 880 is up there, my understanding is it is still within normal range. The study I cited above found that using the 258 pmol/l cutoff, about 39% of study population had low B12, which is the reason for USDA involvement. It might be that your dr. is so used to seeing low/average values that they do not see a number that high very often. The most common sources of B12 in a US diet are meat and dairy. You might just be a meat and taters family, or a healthy eater with a good digestive system.

Robert
 

BethU

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Hi, April ... I think it would be a great idea to mention that you are still searching for answers, too ... and probably for many others of us (like me!) to make clear in OUR answers that we have no medical background, only our own limited experiences as PALS.

Maybe one of the moderators could give an opinion as to how much clarity we need. We have so many different levels of knowledge and experience on this forum ... From Wright and Al and the other real experts and moderators, to people who have been dealing with ALS for years as caregivers and PALS and who know a LOT, to new patients like me who only know about our own limited experiences, to people who are just beginning to ask questions, to those who have been searching for answers for years.

I think anything that helps us communicate more clearly, especially to newcomers, is good. But maybe I'm out in left field. Any suggestions or feedback would be welcome.

Take care,
BethU
 

awieleba

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beth u~
this part of the forum is 'do I have als?" so I assume posters and those of us that linger here and post in this area dont have diagnosed. and when I post to someone, I dont say that I have als and this is what happen to me. I guess I am not understanding how me asking a question to her about temporal headaches and saying that I have them with a funny mri findings means that I indicated that I have als and that it is a symptom? Am I in left field? IF I was a pal, why would I be asking her quesitons and relating it to my stange symptoms? I guess I am confused by what you are saying to me? I am not sure what I did?

Robert~
no, I am not a meat & taters gal. I was and am a non meat eater. Granted, while prego I had a few hamburgers but I dont eat meat. And I had bad colon infection with IBS, so I dont have a good digestive system at all! that is why I thought it was strange. at the time that it tested that, I had severe colon shut down and was an iv and only allowed to eat oatmeal and banana type food for months!

Who knows!
 

lydia

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thank you all for feedback!

I am so grateful for all the responses and will try to respond to each below:

Rose, I used to have the nasty flat-on-your-back-for-24-hours-or-in-the-ER type of migraines years ago; maybe 3-4 times a year for about 5 years. No treatment other than sedatives at ER. Then they just went away, thank goodness.

Sdsyd (Cindy), over the weekend I searched for all your posts because I remembered your B12 story (note that a search for 'b12' didn't produce any hits, I alerted Al). Neuro didn't seem concerned about why I might be low (low-normal?). I didn't realize that B12 comes from animal products. It amazes me how ignorant I am. I eat eggs (egg beaters) every day and love steak. Perhaps that is the reason for the (possible) small vessel disease!

April, I agree...neuro was so nonchalant it must not be serious (or so you would think!) And no, I don't have any of those pains in jaw/face. But in the past week or so I have been having this sense of pressure on the very top of my skull, as if someone is pressing something into my scalp (like a bottlecap). What is that about? I keep reaching up there to see if there is something there (how many times can you use the word 'there' in one sentence?).

And I understood where you were coming from with your comments and questions. I have been reading the forum for quite awhile and am pretty familiar with most of the regular posters' stories (but sometimes I have to search and reread about someone all at once). But I can see if someone new(er) was on who wasn't familiar (in other words, they didn't read and memorize all the old posts first!) they might not realize you didn't have an ALS diagnosis...

What I find valuable about this part of the forum is that those of us in limbo (and maybe I am not in limbo anymore) have the benefit of sharing with each other as well as with those who are directly impacted by MND (themselves or a family member). When I first started reading it was hard to keep it straight (who was who) but now I am better. But help like BethU suggests could be valuable, especially to the brand-new. I wonder if a solution would be one of those tag lines after your name, a "signature" that says something like "ALS diagnosed 4/07" or "no diagnosed yet" or "LMN only" etc...I was on a forum for my brother when he had a bone marrow transplant and it seemed like many of the posters had these tag lines after their names; some of them quite lengthy. Certainly would alleviate the constant need to state the disclaimer "I am not a doctor" or "no diagnosis yet" etc...

Lovelilly, I am already working on finding new neuro. But in her defense, she does speak beautiful English-I have heard her. But last week, it was bizarre, I felt as if I was with someone who couldn't speak English, or oh no, even worse, as if I was with someone who thought I was a moron and therefore could only handle bits and pieces of sentences. OMG, maybe she thought I couldn't understand! She was completely patronizing: the grinning, the patting of the knee. She was talking to me the way you talk to someone you think doesn't understand you. Wow, this is bothersome.

Suzannj, I don't think I will switch to your doctor because it is the same group; seems awkward! Don't you think? An hour with you! I am jealous. I did email you at Yahoo account, did you get it?

BethU, I always value your posts and appreciate your efforts at improving communication on the forum. You are right, for a newcomer it is confusing keeping everyone straight. I have been lurking for more than a year before posting this summer, so I am not as new as some. But I know I only just realized there were profile pages! I am on a Parkinsons forum as well, and ALSforums is so much better in the way it is organized, how you can post, everything really.

Robert, thank you for that explanation about B12; very very informative. I am going to pursue the cause of low-normal (I guess thats what it is). And that is interesting about the 3-4 year supply of B12. About 4 years ago I had a strange rash that started on my calves, moved up my legs, over my abdomen, jumped to my forearms, up my arms, across my chest, up my neck and finally reached my face (and then and only then did I go to a dermatologist, only to have it "fade". He concluded 'eczema'). It was fascinating because it was completely symmetrical in its appearance and progression. It itched like crazy. While it faded, it never completely goes away. For a good 6 months after it faded its outline always showed upon getting out of a hot shower, and the calves where it started are always a little on the itchy side. Every now and then it "wakes up" and starts again on calves, might move behind the knees, up the legs a little, but no further. Your (?) comment about B12 running with autoimmune stuff has me wondering. Especially since lately my left elbow/ankle hurt to touch (when they didn't for the past year and a half).

Thanks again everyone for your input!

Lydia
 

BethU

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Hi, April ... I understand your point, and hope you will understand mine. There is a lot of "cross-talk" between forum topics ... and many, many PALS and CALS respond to questions posted on the "Do I have ALS" board, sharing their experiences and their expertise.

In fact, that's the purpose of having such a board, isn't it? People who are concerned that they might have ALS can post messages there, and hopefully get informed feedback from ALS patients or caregivers. Of course, I'm sure it's therapeutic for newcomers to exchange speculations with each other, too.

I would hope that all members of the forum would want to give newcomers the clearest guidance possible, but if you don't feel the need to mention that you do not have an MND and are looking for answers just like others on the "Do I Have" forum, that's fine with me. My only concern is the fact that you have close to 500 posts, which could well lead many newcomers to jump to the conclusion that you are speaking as a PALS, and that the symptoms you list are somehow connected to ALS.

I know, people should never assume anything, but sometimes they do!

Let's let this go ... I apologize for mentioning this! I was simply trying to clarify the issue for newcomers, not upset you. ALS is a really, really nasty disease. For most of us on this forum, coping with ALS in our daily lives is a much bigger issue than forum etiquette!

Still friends I hope! :)
BethU
 

awieleba

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HI beth,

It's funny, I did not relize that I had so many posts and someone would think I had been around this block for awhile. I think of myself as a newbie! I guess I am a newbie that talks too much! I assumed that from my other posts that it was known that I was struggling to get a diagnosed, BUT you are right, it is not assumed. and there is alot of cross over and I for one appreciate and value any and all advice that is given by a pal.
I should say I have no diagnosed, and I think in the begining I did say that all the time. I guess I am getting lazy.
You did not say or do anything wrong, I am sensitve these days and feel very nervous. THis is the only place I have where I can talk and not scare my family or let out my fears. I have been doing a great job of keeping it inside lately and it comes out here.

always friends

april
 

awieleba

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lydia,

did you tell your neuro about your rash? Mine always asks me if I have ever had a rash. So does my rheumy. Have you had a screening for lupus? I am curious about your findings in the mri, did you ever research it or are you waiting to see a new neuro?

good luck

april
 
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