MS or Celiac or B12 deficiency?

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MS or Celiac or B12 deficiency?

Postby nooper » Thu Dec 08, 2011 1:07 am

Hello,

I wanted to get some board members thoughts on some of my symptoms as I want to get some other ideas about what my problem may or may not be. I am a 35 y/o male and around October 9th started getting some neurological symptoms that pretty much came out of the blue. A few days prior I felt like I was coming down with something - just not really feeling well, having little energy, and stayed sleepy most of the time. On Sunday October 9 after going to bed feeling okay, I woke up with a stopped up left ear. I had no reason to think this was all it was, so I went about my day, but I felt very foggy that day (and the day before). I had lunch, and rested most of the afternoon thinking I was getting sick or something. On October 10, that Monday, I made an appointment with my PCP, expecting a sinus infection or labyrinthitis. That Monday when I woke up, in addition to my plugged left ear feeling, I also had numbness in my face on the left side. It was around my ear, scalp, and lips and teeth. I mentioned that to my doctor and he did some basic neurological eye movement tests and prescribed me an antibiotic for a sinus infection saying that could cause the numbness and to follow up in a week if it did not get better. I had no prior neurological symptoms besides some twitching here and there, but nothing severe. As the day progressed, I seemed to have been getting worse as it was difficult to drive due to oscillopsia and it was hard to monitor traffic, etc. Also, my speech was becoming slower and by the next day it was becoming hard to speak due to slurring and I had spoken like I had a stroke. I went to visit an ENT at this point because my girlfriend was getting increasingly worried about my symptoms being more neurological than a sinus infection, so I made an appointment with an ENT the following day (Tuesday). On Tuesday, driving and speaking was harder and walking was difficult because it was hard to see where I was going. I had slight vertigo and balance issues, and direction issues. When I would turn a corner things I was direction challenged - hard to explain. I did not have any muscle weakness however. After a very quick examination from the ENT, he told me that he agreed with the PCP and gave me Prednisone to "knock it out quicker" in a 6-5-4-3-2-1 pack. I went back home and decided to try to wait it out. By the time a week was up, I showed no improvement. I called the doctor and could not speak clearly to the receptionist due to slurring issue. My left hand was uncoordinated as well, making typing very difficult. The PCP got me in that morning and the doctor examined me and pretty much immediately ordered an MRI that day and took a blood sample (I am unsure what was checked and still need to check that). I was taken by my family to the hospital and cognitively was a wreck. My memory was no good and I had to think hard about what medications I was on. I felt like a walking zombie. An MRI was done of my head and with and without contrast. I was on the way home and my doctor called me to schedule am appointment the next day, which I thought was a little odd (he called me personally). The next day, Wednesday, a week and two days after my symptoms set in, I went into see the PCP. Speech was still off, numbness was still there, and ear still felt plugged. He said the blood work came back okay but I think my potassium may have been a little low. Again, I don't know what all they checked for then. But he said the MRI showed lesions in the white matter and that it was a sign of MS. He said he would refer me over to a neurologist as that's where his care pretty much ended and I would need to work with the neurologist at that point. I asked the PCP how many lesions were found and how large they were and he said he actually didn't view the MRI itself but spoke with the radiologist. I looked at the clinic notes from the MRI and it indicated lesions and said "Multiple Sclerosis?" indicating that the radiologist suspected it but I don't think that was an official diagnosis.

So Friday of that week rolls around and I am still not doing very good, having the same symptoms; very very foggy feeling and having speech problems. I speak to the neurologist that people that live in this area "would not send a rabid dog to." Having never needed a neurologist I wasn't sure what to expect. Since I wasn't feeling the best that day, I wasn't able to hold a very intellectual conversation with him. My family did their best, but I nor I wasn't really sure what to ask, etc. He evaluated me and I wasn't showing any muscle weakness not any other symptoms other than the initial ones. That day he tried to get me started on a DMD, and that was the first time I was introduced to them. Obviously a big decision and many to choose from, I told him I would need to think about that and let him know.

I am confused after reading peoples experience about getting diagnosed if this was an accurate diagnosis, as it seems the radiologist was unsure but suspected MS after seeing the lesions. I also had a subsequent MRI of my spine, and it found a C-4 bulging disc but found no lesions. An MRI I had back in 2009 (for headaches) was pulled and it did not show any lesions, however I do not believe it was with contrast.

Afterwards, I developed double vision and vertigo and was not able to drive at all. My cognitive function started returning, my speech got better, numbness went away, and balance is returning. So overall I am improving greatly.

So like most people I have been looking to see if anything else could cause the symptoms I have been having since I have not had the drop foot, left/right side weakness, etc. (and hope I don't :) ) and honestly do not have much faith in the neurologist that saw me.

I read a few things that could possibly mimic the issues I have. One was B12 deficiency and another one was Celiac disease.

I am unsure what my B12 is. The PCP may have tested that on the visit of the MRI, but I am unsure.

Regarding Celiac - I have had stomach issues for many years. I get diarrhea very often, and it is pretty much a regular occurrence. I have mentioned this to my PCP in the past and it was pretty much written off as IBS. I do not eat what I would consider healthy unfortunately (love pasta, pizza, etc.) and have suffered from heart palpitations (PVCs and PACs) for at least 10 years, and mainly after meals, especially large meals. The heart palpitations have kept me from being very active, not to mention the need to have a bathroom close by. Recently, I have been eating less and less, sometimes only one meal per day because of the bloating I get and the palpitations that come after a larger meal, and having to go to the bathroom abruptly after breakfast interrupting my workday. I have just thought this is the way my body works and I have learned to work around it. I figure if I avoid large meals I don't have the heart issues, etc.

So, what I am getting at, is with the bad diarrhea, and lack of eating (I still weigh about 225lbs@ 6ft (but was 270 about a year ago) so I am not underweight) would it be possible for me to be malnourished and develop the symptoms that I have experienced? If I had something like Celiac where my body didn't absorb the nutrition it was supposed to anyway, and on top of that me putting less food in my body, would it get me to a state I am in now? Before I did not take any supplements but I do now (Fish Oils, D3, B12) and have been taking them for a few weeks since I became ill.

I just wanted to throw this out there and see what people thought.

Is that diagnosis typical even without a lumbar puncture? Shouldn't they have done more tests to rule out other diseases?

Thank you for any input you may have.
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Re: MS or Celiac or B12 deficiency?

Postby NHE » Thu Dec 08, 2011 2:31 am

If the only tool that you have is a hammer, then every problem begins to look like a nail. Since you have digestion issues accompanying your neurological symptoms, you may need a doctor with a different tool box. I'm not saying that MS can't affect digestion, it can affect nearly any part of the body. However, to start right off with a DMD without having ruled out other possibilities may not be the best approach.

Standard caveats apply, I'm not a doctor nor do I play one on TV.


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Re: MS or Celiac or B12 deficiency?

Postby nooper » Thu Dec 08, 2011 2:52 am

Thanks for taking the time to read all that and for your reply. I tend to completely agree with you.
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Re: MS or Celiac or B12 deficiency?

Postby Okasan » Mon Dec 12, 2011 3:05 am

Seems like there are a lot of that type of neurologists around! Sorry you got to experience one. It definitely sounds like you are eating something your body doesn't like but don't bother talking diet with your neurologist it's the equivelant of talking about voodoo! A lot of MS sufferers find their health is better when they eliminate wheat, there is now recognition that in addition to coeliacs disease there is gluten intolerance, previously they believed that if you didn't test positive for coeliacs there was nothing wrong with you. Also gluten is very high in fructose and they now understand that fructose malabsorbtion is responsible for around 30% of IBS there is a hydrogen breath test for this. Find out if they tested you for B12 and what your results were. One thing that I realised was that when we don't feel quite right every day we start to think that that is normal and it is only once we start to feel well that we realise how unwell we used to feel. Good luck, at least try eleminating wheat for a few weeks and see how you feel. :smile:
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Re: MS or Celiac or B12 deficiency?

Postby bartman » Mon Dec 12, 2011 4:57 pm

You have neither of the three. You likely have chronic Lyme disease, bartonella, and babesia. you did not get better on the antibiotics because you had a herxheimer. Predisone is not what you needed. Find a Lyme dr. ASAP
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Re: MS or Celiac or B12 deficiency?

Postby nooper » Mon Dec 12, 2011 8:01 pm

I am going to the doctor tomorrow for a follow up to hopefully get some of these questions answered. Thank you for the replies!
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