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Myscootch

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Jul 17, 2013
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Learn about ALS
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US
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New jersey
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Flanders
A little less than a year ago I started having troubles while walking my normal 5 miles where my left foot ended up dropping while walking. As time has moved on I now walk like I have cerebral palsy, have trouble holding my head up any length of time including driving, the right arm has started having issues picking up items, and short of breath just sitting on the couch intermittently, etc. At first I was informed I had an unknown virus and just to rest.

As time has passed I finally was referred to a neurologist from a spine surgeon as I thought the spinal fusion I had in 2010 went bad. He did a lumbar and cervical MRI which was negative. The neurologist had an MRI of the brain done which also was normal.

Well all blood work was normal with the exception of what he calls a borderline b12 serum result of 305. Unfortunately this neuro refuses to answer any questions or even allow me to speak in the appt. I have only seen him twice and I now have an appointment with a new one who was highly recommended. (note the first neuro was so busy being obnoxious during my appt that he wrote the prescription incorrectly which delayed getting Foltx).

So my question is does anyone know if a borderline b12 serum at 305 could cause such severe neurological issues? I have no tingling, no numbness, no cognitive issues. One last note is that the neuro stated he was sure I had MS and now he feels as he put it there is absolutely no reason for some of my symptoms and proceeded to tell me what my symptoms are now!

I have no family to help me out, live in an apt, have pets so I am trying to make sure things are taken care of just in case something serious is going on!

Any input would be greatly appreciated! Thank you!
 
I am sorry for all you are going through. As I was reading I thought second opinion so glad that is in the works. How long do you have to wait? Your symptoms sound pretty extreme for a borderline test but hopefully your second neuro will be able to sort things out for you. If it is a very long wait maybe check in with your pcp to be sure nothing else should be done in the meantime
Good luck
Nikki
 
I found this on a quick search. See the neuro for a second opinion. In the mean time, you need to stop fretting. I know easier said than done, but stress and anxiety will make things worse. Finding out what is wrong could take a while. Some here it has taken months, or years and some are still waiting. Just be strong and be patient.

This is what I found:

Your doctor may also order a Vitamin B12 test if you have certain nervous system symptoms. Low levels of B12 can cause numbness or tingling in the arms and legs, weakness, and loss of balance.

Normal values are 200 - 900 pg/mL (picograms per milliliter).

Normal value ranges may vary slightly among different laboratories. Talk to your doctor about what your specific test results mean.

The examples above show the common measurements for results for these tests. Some laboratories use different measurements or may test different specimens.

Values of less than 200 pg/mL are a sign of a vitamin B12 deficiency. People with this deficiency are likely to have or develop symptoms. Older adults with vitamin B12 levels between 200 and 500 pg/mL may also have symptoms.

Causes of vitamin B12 deficiency include:
•Not enough vitamin B12 in diet (rare except with a strict vegetarian diet)
•Diseases that cause malabsorption (for example, celiac disease and Crohn's disease)
•Lack of intrinsic factor
•Above normal heat production (for example, with hyperthyroidism)
•Pregnancy

Increased vitamin B12 levels are uncommon. Usually excess vitamin B12 is removed in the urine.

Conditions that can increase B12 levels include:
•Liver disease (such as cirrhosis or hepatitis)
•Myeloproliferative disorders (for example, polycythemia vera and chronic myelocytic leukemia)
 
Hello,

Thank you for your quick reply! I have the new appt on 7/26/13 as I really do not trust this first neurologist and since he refuses to explain anything to me about anything I am very thankful for this new appt.

I do have some other symptoms that are not as prevelent at this time but I am more interested in this b12 issue as I have no anemia, no tingling, no numbness symptoms and no reason to believe, other than smoking which can effect the b12 level that there is an absorbency issue. I am taking the Foltx that was prescribed as to not take any chances here, but considering the onset of symptoms and the fact this has been progressing for almost a year now, I would have though this neuro would have instead of making me wait 2 more months, at least tried having additional testing done including the more accurate urine test for b12 deficiency?

I have had special tests done for the creative, liver, etc which again are all normal. I am not looking to have any serious disease as I hope no one is, but I need to really get a realistic idea of what I am working with as I am unemployed, have no family to help, like walk my doggy. Etc.

Worst of all, I have fallen six times in the last several months walking the dog and the neuro just told me to stop walking the dog!

Thank you again and I'll guess I will just keep working on this and hopefully the new neuro can shed some light!

Betty
 
Hello Again,

Well after seeing the 2nd neurologist, he did inform me that the B12 was very slightly down but still within normal range and would not be causing the issues explained neurologically. Just a note that the first neurologist sent only his report (his opinion) and also put things in his report that were not the truth which I find quite disturbing.

At any rate, I have been referred to the top ALS Specialist in NYC so I guess this is the next step. The new neurologist stated he as a neurologist is not able or equipped to deal with whatever neuromuscular condition and I need to be seen by someone who specializes in ALS and neuromuscular diseases. So needless to say, I am relieved but quite scared.

I have no family to help me out and as I live in an apartment, have pets and a lot of responsibilities, my head is zooming on what I need to take care of as I was informed yesterday I have now to use a walker to get around and this will be a challenge trying to walk my dog.

Does anyone have any suggestions to help me out here as without a formal diagnosis I feel stuck right now on what to do with my dog, rabbit and fish. I know for some this really may not sound too important but to me these guys are my life and family!

Thank you again for any input!

With warm regards,
Betty
 
Betty,

I hope you don't have too wait too long for an appointment with the specialist. I know how gruelling the wait can be.

Of course your pets are important! I so get that. I've enlisted a couple of neighbours to walk our dog on those days my husband works late. They are happy to help out and we are appreciative. There are on line pet suppliers who deliver the dog and rabbit food. That will relieve you of the burden of handling the big and heavy bags.

Once they figure out what's going on with you, there will be an opportunity to make plans. Now would be a good time to make a list of your needs and concerns and discuss these with your friends. If this is not a viable option for you, I would urge you to consult your GP. He/she can likely refer you to local agencies who can help you in the interim and on a long term basis if necessary. Your church or synagogue congregations are also wonderful resources.

Betty, if people don't know you need help, they won't help - you need to reach out. I think you will be pleasantly surprised by the generosity of people. I am still in awe of support I have received - even from total strangers.
 
Hello Elaine,

Thank you so very much for your response as it is extremely uplifting to me! I am trying to work with a few of my neighbors/friends at this time but as you probably already know the things that are going through my head of properly taking care of my responsibilities is extremely important to me and just at this point just getting things out of my head is a great help as I am and always have been a very heavy thinker and keeping things in my head is not a good thing as I get overwhelmed with my thoughts.

Trying to balance each day has become such a challenge as I have always been used to coping with things in a physical manner and not to be able to do this right now only makes any denial of what is going on just a smack in the face of reality. I tend to under play things as I don't like drama and feel very trapped right now as I guess most in this situation would!?

I have always been the caretaker and am diligently working on for the first time in my life asking for assistance but not because of pride but because I am not one that likes to bother others, so needless to say this is a true learning experience for me!

Again thank you for your kind response and support as I greatly appreciate being able to get my thoughts out of my head and hear from others who are or have gone down this road!

With warm regards,
Betty
 
Hello again,

I was wondering if anyone may be able to answer a question I have? I went to a second neurologist and I must say he was extremely thorough, however I am a bit confused as he referred me to the top ALS person at NYC Columbia University versus doing any other tests like an EMG or nerve tests. I have had the standard blood tests for ruling out Lupus, B12 deficiency, vitamin D deficiency and a few others I am not familiar with. Also have had MRIs of the full spine and brain. Everything came back negative but I guess I M confused as to why before performing the usual list of tests I would be directly referred to the top? Does anyone have any input on why this may be the case?

With warm regards once again,
Betty

PS - I was extremely fortunate as I have the appointment next week!
 
Oh yeah, I forgot to mention the second neurologist stated, "he does not have the ability and is not equipped to deal with this type of situation" and than made the referral, hence the confusion as I would think a neurologist would have dealt with such situations?
 
Betty,

Often neuros prefer to do their own testing - so knowing this, maybe that's why he referred you on without doing an EMG. They (neuros) also have their area of expertise/interest from strokes to epilepsy to cancer. That could be another reason for the referral. My first neuro sent me to another for exactly that reason. Don't read too much into it.

Hang in there!
 
Elaine,

Thanks for the quick reply as I greatly appreciate it! I wasn't aware that neuros have different areas of expertise! I guess this is also a journey of learning because in all honesty, the doctors sure as heck don't explain anything in the area I live in and I hear this from almost everyone I speak with in northern new jersey unfortunately. I did have one exception in 40 years and that was a spinal surgeon, who treated me like a human that I was wondering what was wrong him! Sad but true but he was great!

Thank you again,
:) Betty
 
Hello again,

Well I had met and been examined by the top ALS specialist at Columia University in NY yesterday and he also had some blood work drawn (I did not get a chance to the what tests were requested), however, ALS never was mentioned at all. The doctor referred me now to a Movement Disorder specialist, also top guy, and I was told that what is going on may be Ataxia. Well needless to say that is a broad term covering a HUGE area.

What I don't understand is that he did not mention ALS regarding ruling it in or out. Does anyone ow if this is part of the normal systematic testing that happens with ALS? I am not looking to have it and feel extremely bad for those who do beyond what words can even express, but with this doctor being the top ALS specialist I was referred to I don't understand why he wouldn't have mentioned that ALS was ruled out, there may still be a possibility or at least something regarding his expertise so this is why I am asking. In the time I was with him being examined ALS was not mentioned throughout the entire process. Does this possibly mean there is absolutely no way I can have that or again this is just checking other possibilities and it is possible?

Thank you again for your time! Oh yeah, I have to sit and wait another 4 weeks before going back. So at this time I am confined to my apartment due to mobility and am extremely confused and frustrated!

With warm regards,
Betty
 
Oh yeah, the ALS doctor asked me if the other 2 neurologists had me take an EMG tests several times and I stated no and yet he also did not request one. Also he asked if they indicated any type of diagnosis and other than the b12 def. neuro who insisted I would be cured by now taking the super vitamin, there has not been any indication of any type of suggested diagnosis. he seemed surprised by me stating no to both, yet he has done the same thing and now I am off to another one!
 
It is hard to know what the doctor thought not having been present during the visit. It sounds like he thinks you have primary ataxia ( as opposed to secondary ataxia from another disease such as MS). If you have not already done so go to the national ataxia foundation and join their forum. Since you apparently did not get the chance to ask? Call the doctor's office and leave a message asking whether ALS is on the table. When you go for your next visit do not leave the office without getting an answer as to what is still on the list of diagnoses. Ataxia is no fun but better than ALS!
 
Betty -

I'm a bit confused :confused: (in a good way) - if you saw an ALS specialist and ALS was not mentioned - sounds like good news to me. I'm thinking you didn't want to ask the direct question? If I were you, I'd ask my GP to contact neuro's office to request a report (even a quick verbal if possible) of his findings. You can then sit down with the GP and review everything and have it explained to you. Or you can wait four weeks and ask the next guy. By my count the " top guy" is the third neuro ?

I'm still thinking ALS is off the table - I'll be happy when you get that official word and breathe a sigh of relief along with you. There's for sure something going in with you and hopefully you'll know what it is soon, get it fixed, and move on with your life.
 
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