Dr. Grubb visit

[Guest Julia59]

Hello everyone,

I had my visit with Dr. Grubb Tuesday. He looks well, and I think he is taking good care of himself. I pray for this to continue, as he is a person with a good spirit and a genuine concern for his patients. This is rare in most physicians.

I told him all the issues with the progression of my POTS symptoms. I have had about 4 or 5 near-syncope spells, and increasing weakness and fatigue. This could be because of the progressing issues with my upper cervical spine and cranial problems. It's hard to tell which is causing which. The pain has been getting a lot worse, and I am also getting more numbness and pins and needles in my legs/feet and arms. The weakness in my upper body is progressing as well.

Dr. Grubb can not help with the spinal issues as I would never expect him to anyway. He will try to help me control the fatigue , or any POTS related issues. He did give my a drug called CEREFOLIN and told me it would help with my cognitive function, as this has been declining in me as well. He said it was very safe.

Has anyone else experienced this drug? AS you all know---I always fear taking new prescriptions. I read about it, and from what I can see, it looks to be an enhanced form of folic acid.

My neurologist has set me up with another opinion with a neurosurgeon at the university of Michigan to evaluate my situation with the cervical/cranial instability.

Also, I notice that I have some kind of lump in the back of my throat. It actually feels like a hernia---something poking out---a very uncomfortable sensation. If it continues to be bothersome, I will see my PCP and have a look at it.

Meanwhile---i'm walking, able to eat and bathe myself and I am greatful for that. Also, I have somewhat of a social life if I don't over do things during the day. I just rest for several hours before I venture into any social activity. If I don't rest, I usually have a difficult while i'm out. On the karnofsky scale i'm a 65. I am limited in physical activity such as shopping ect. as my cervical spine problems have progressed.

But I have some good days where I can feel normal-----until I start moving----LOL---- I always try to keep active, but i'm more careful now as I have learned my lesson--------------at least I hope I did. One of the physical therapists said I was reckless and told me I need to be a lot more careful. That was a wakeup call.

I'll see Dr. Grubb again on October 1st. Everyone take care-----and thanks for reading my babble.....................

Julie :0)

[Miriam Poorman-Knox]

QUESTION: WHAT IS THE KARNOFSKY SCALE? I AM GALD YOU ARE FEELING BETTER> the drug of which you speak i think is a new cognition drug< and that it works well> take care

[Merrill]

Julia, glad to hear you had a positive experience w/Dr. Grubb this week and that he's doing pretty well. I'll bet a lot of people breathed a sigh of relief after reading that...

Do you remember that cerefolin has been a topic in recent months? If not, I'm posting one link that had a gazillion responses ... but if you do a search, you can read about other people's experiences as well.

http://dinet.ipbhost.com/index.php?showtop...87&hl=cerefolin

I hope it works for you!

Best,

merrill

[Guest Julia59]

Thanks for the information! I would like to know how KarenLorrel is doing now several months later.

My brain fog---of cognitive function has gotten so much worse. Basically my brain is tired. It's not that I can't learn anything---I just get very fatigued and brain fogged very early in the stage. When I went to school for the medical Coding classes it got pretty intense for me at times, but I was able to complete the program, and take an advanced program. After classes I was completely drained. I was also in a lot of pain----which didn't help.

Maybe this suppliment will help me on several avenues. I never noticed the posts earlier----I guess I missed out---LOL.

Julie :0)

[BuddyLeesWife]

Below is my post from March 6th. I know it doesn't have as much credibility since I do not take it myself but can only comment on what I notice in my husband. When he first started Cerefolin, I recall that others on the NDRF site experienced headaches so I kept checking with him but fortunately he did not get them. He did have some gastro issues when he first started but I don't know if it was coincidental or not as he did not have any problems when he restarted with the supplement. I hope it helps you. Regarding the cost, it isn't as bad as I had previously mentioned (I'm still not used to buying in bulk). He takes 1 tablet a day and with our insurance the cost was $93.00 for a 6 month supply.

My husband began taking the prescription vitamin supplement Cerefolin about 6 months ago to help with fatigue and brain fog. I read a post on the product from another member of this forum (or maybe NDRF) and our family doctor prescribed it. I noticed an improvement in his thinking (actually a lessening of his forgetfulness) and he noticed an improvement in his level of fatigue and a reduction in nap time.

After about 3 months, we experienced difficulty in obtaining the supplement and finally learned that Rite-Aid is involved with a lawsuit with the manufacturer and will not carry the product. As a result, he did not take it for a couple of months. In the meantime he took regular folic acid and B-12 supplements.

Now he has been taking Cerefolin for about 3 weeks and we have both noticed improvements again, me on the mental sharpness and he has commented on the improvement in his fatigue and also that he is thinking clearer (YEAH!). So, I don't know if this is just wishfull thinking on our part but this is the second time the product has resulted in noticeable improvements.

There is a lot of research on the benefits of folic acid and vitamins B-6 and B-12 on cognition. The supplement is marketed for dementia and Alzheimers patients. It's not cheap. He takes 1 tablet in the morning and has not had any side effects. I'd be interested to hear an update from anyone else using this supplement.

www.cerefolin.com

[Ernie]

Hi Julia,

Thanks for sharing the update on Dr Grubb and on your visit with him.

I read that some people have good result with this new drug. I am thinking myself of asking my PCP to prescribe it to me.

Maybe you could start with 1/4 of the pill and work your way up.

Ernie

[KarenLorrel]

Thanks for the information!  I would like to know how KarenLorrel is doing now several months later.

My brain fog---of cognitive function has gotten so much worse.  Basically my brain is tired.  It's not that I can't learn anything---I just get very fatigued and brain fogged very early in the stage.  When I went to school for the medical Coding classes it got pretty intense for me at times, but I was able to complete the program, and take an advanced program.  After classes I was completely drained.  I was also in a lot of pain----which didn't help.

Maybe this suppliment will help me on several avenues.  I never noticed the posts earlier----I guess I missed out---LOL.   

Julie :0)

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[KarenLorrel]

Hi Julie,

I have been on Cerefolin for about 9 months and am doing very well on it. I went thru a period when it gave me a mild headache, however I cut it in half and then slowly went back to full tablet. It is a prescription 'food supplement.' Dr. grubb explained that it was predigested folic acid combined with some B's so the it can easly absorb into the brain. I found it helped me to focus and feel gnerally better.

I hope it help you too!

You sound like you are doing much better. I have not posted for a while so it was good to read that you are doing better.

You might know the answer to my question. I have an appt with Dr. Grubb the first week in April and I had a call left on my answering message that cancelled my appointment and said they would call back and reschedule. I havent' heard back. Have you heard of this happening to others?

K

Thanks for the information!? I would like to know how KarenLorrel is doing now several months later.

My brain fog---of cognitive function has gotten so much worse.? Basically my brain is tired.? It's not that I can't learn anything---I just get very fatigued and brain fogged very early in the stage.? When I went to school for the medical Coding classes it got pretty intense for me at times, but I was able to complete the program, and take an advanced program.? After classes I was completely drained.? I was also in a lot of pain----which didn't help.

Maybe this suppliment will help me on several avenues.? I never noticed the posts earlier----I guess I missed out---LOL.?  ? 

Julie :0)

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[steph37822]

oops

[Guest Julia59]

Thanks for the information Karen. I have taken quite a tumble lately, and i'm trying to feel better, so hopefully this will help.

My POTS issues have taken a back burner to my cervical spine/cranial instability issues. Basically my whole spine is giving my trouble---some areas worse then others. I guess my lumbar is about the best---but just found out about two herniated idsks there also--

Take Care,

Julie :0)

[BuddyLeesWife]

A new research article (March 2005) - I've copied the Objectives and Conclusions of the study and provided the link to the article.

Homocysteine and Cognitive Function in a Population-based Study of Older Adults

Jyme H. Schafer, MD, MPH; Thomas A. Glass, PhD; Karen I. Bolla, PhD; Margaret Mintz, MS; Anne E. Jedlicka, MS; Brian S. Schwartz, MD, MS

Objectives: To assess the relations between homocysteine levels and neurobehavioral test scores representing a broad range of cognitive domains in a population-based study of older adults.

Conclusion: Higher homocysteine levels were associated with worse function across a broad range of cognitive domains, and the magnitude of the associations was large. The data suggest that homocysteine may be a potentially important modifiable cause of cognitive dysfunction.

Link: http://www.medscape.com/viewarticle/501018?src=search

[BuddyLeesWife]

Just as I thought something that seemed to be helping was safe, a new study warning of folic acid supplements. Also, our new neurologist cautioned that my husband not exceed 50mg of B6 per day as it can cause nerve damage (1 tablet of Cerefolin has 50mg of B6). For now he is going to continue to take it as we still believe it is helping.

High Folate Intake Associated With More Rapid Cognitive Decline in Elderly

http://www.medscape.com/viewarticle/502855?src=search

By Amy Norton

NEW YORK (Reuters Health) Apr 11 - Older adults with high intakes of the B vitamin folate may have a faster rate of mental decline than others their age, researchers report in the April issue of the Archives of Neurology.

The finding is unexpected, and it's not completely clear that folate per se caused the cognitive deterioration seen in some study participants, according to the investigators. However, the study's lead author told Reuters Health, the results do suggest that older men and women should "use caution" in taking folic acid supplements.

[Merrill]

BLW, I hope you're not too worried. I've been reading about cerefolin a lot since learning about it on this forum--and i've been trying to get some people in my family tested for high homocysteine levels ... I looked up a couple things after reading your post; this may or may not help /... it answered some of my own questions, though, so I thought I'd post.

The following is from the March of Dimes Web site.

What is the difference between folic acid and folate?

There are two important differences between folic acid and folate:

Where they are found. Folic acid is the synthetic form of the vitamin that is used in supplements and fortified foods. Folate is found naturally in foods, such as beans and other legumes, leafy green vegetables and orange juice.

How the body uses them. While the body almost completely uses synthetic folic acid, it only partially uses natural folate.

B6 is B6, and it's not the same as folic acid/folate. The package insert at www.cerefolin.com shows that this supplement includes B6, B2, B12, and methylfolate ... Cerefolin is NOT a high folate-only supplement ... and it's been proven in many studies to help slow dementia. (Which isn't why people here take it, I realize.) But since it's not folic acid only and it does include a high dose of B12, which the article says slows dementia, then I think we oughtn't get too worried?

best to you and your husband,

m

[corina]

Merrill,

did you try cerefolin yourself?

I'm curious to know if ti works because I sometimes am afraid to get dementia. I would like to try it, if safe ofcourse!

Corina

[Merrill]

Corina, no I haven't tried it myself--I'm not sure my symptoms warrent it at the moment. Dementia runs in my family, both sides, and I am likely to suffer it too someday. The next time I have blood work done, I'm going to ask them to check my homocysteine levels... I don't expect them to be high at this point.

There's another supplement similar to cerefolin called Foltx. You might read about them on the internet if you're curious and then talk to your doctor.

Take care,

m

[Monica2000]

Julie,

Since you mentioned it, can you (or anyone) shed some light on the relationship --if any-- between POTS and cervical spine problems? I developed some kind of autonomic failure over the last year, with extreme fatigue, low blood pressure, an episode of fainting last year, etc. But before that I've had back and neck problems for a long time, with the cervical-related issues getting worse lately, including pain in my arm. I also get a lot of ringing in my ears, and don't know if it's from my general state or possibly from the neck problems. Is there a relationship between these two or are they simply different problems you're dealing with at the same time?

Thanks and best of luck to you,

Monica

[Merrill]

Hi, Monica. I know you asked this of Julie, but I too suffered major cervical spine stuff this last year ... I posted about an unusual experience I had December 2, I think it was, which led to my diagnosis and treatment of bulging discs, arthritis, and reverse curvature of the cervical spine. (Before this one freaky incident, I suffered neck and shoulder pain and stiffness and numb hands and arms during the night, numbness and tingling during the day.) An MRI revealed what was going on. I asked every health professional I encountered at the time what the connection was between this and pots, and they all said none. I believe that, actually ... The spondylosis/arthritis is wear and tear that comes with aging--some people have major changes but feel nothing; others have less change but more pain as a result. I highly recommend you see your gp and get an MRI of the cervical spine to see what's going on. I had 10 weeks of twice a week physical therapy, and while I'm still having problems, the daytime symptoms are gone and the nighttime ones are much less common. Pain and stiffness is still daily ... but it's not nearly as severe as it was.

Best to you,

m

[Monica2000]

Thanks for the reply, Merrill, and I'm so glad you found a therapy that helped you. I hate to take up space on the POTS site for something that may be unrelated, but I'd be interested in what kind of physical therapy you did that helped. I was just sent to a therapist and had one sesssion, but he just gave me little exercises (shoulder shrugs, etc) that I can't imagine will ever help with a serious problem like this. I wonder what you did. Maybe you can reply privately, or here if others could be interested, not sure. All the best.

Monica

[KarenLorrel]

Hi Karen, I'm not sure if you've been following Dr. Grubb's health, but he had surgery for kidney cancer awhile back. I saw him 2 or 3 weeks ago, and he's recovering well, but still not back to his full workload, so yes, he's had to cancel many, many appointments these last few months, as he also had neck surgery before they found the cancer.

Hopefully you get rescheduled in a timely manner, but try to be patient, as he's trying very hard to care for us all, but really needs to take care of himself first. Even when I saw him with half his workload, i had a 3pm appt. and didn't see him until after 6. Just trust knowing that as long as you are waiting, when you are with him you will have his full and complete attention.

Take Care

-Steph

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[color=blue]  Hi -Steph,  Thank you for sharing information on Dr. Grubb.  I have been aware of his situation and I have been very patient...and prayerful.  I would never get upset about Dr. Grubb not being able to see me due to such circumstances.  I have too much respect and gratitude towards him to be more concerned about myself.  

My family doctor is a friend of his and she was asking when I would be seeing him again. I was wondering if rescheduling had started although I did not want to call the office. I thought the forum would be a less intrusive way to find out. I am sure his office has had a lot to deal with so asking on the forum seem to make sense.

I have been very sick, unable to work much and will have to leave my job, and yet I have not called his office knowing what he is going through.

My daughter is also struggling and I am concerned about her so, I was hoping to hear that maybe some people are being rescheduled. I certainly did not mean to sound impatient...because I am more concerned with him than myself. [/color][/code

I was hoping to hear that rescheduling had begun, but my daughter and I will wait and we wil try suggestion made by other doctors. It will be great to see him again and get his help. But for now...I pray for his recovery...updating me with information is appreciated....as far as appealing for patience...I can wait for as long as it takes him to heal..and more. Karen

[Eli6596]

FYI

There are no supplements or prescription medications that have been proven to prevent dementia in a normal patient.

Karyn.