My Neurology Appointment Yesterday

[RainCat]

Yesterday 12th, i had a neurology appointment, but i had a stand in Neurologist a Mr Grünewald. Anyway he had a good long look at my notes and did the usual neuro exam stuff strength tests, reflexes etc... He was particulary keen on listening to my symptoms and how things have progressesd symptom wise etc. He did seem very interested in me. Part of his quesstions turned into how was my gut and bowl movements. I answered honestly saying how i always thought i had like IBS, when i need to go i have to go like sharpish, and same with passing urine. Also told him my stools were more often than not pretty loose, but sometimes i could be more constipated but it wasnt that often.Anyway he said out straight that he thinks i maybe sensitive to gluten and even have celiac dissease, and that he wants me to have some further bloodwork done. (i'm sure this must have been done at some point in the past as ive had lots of blood taken in the past 6 years) He said that i have definate flat lower limb reflexes and mixed motor sensory neuropathy in both legs..... he also saw my cramp and fasciculations in action during the exam.For your information on returning home i found out that this neuro was part of this studyAt the nearby Hallamshire hospital.He asked me what i'm taking med wise for this and i said only LDN, he asked what is that. I told him about what i new and at what dose i started and i'm currently taking. He the flicked through the Mimms book of meds and asked me what it as done to help me. Told him its helped with Pain, Fatigue and Stiffness mostly, but i do feel a differnce in mood and energy. I also told him that my current neuro would not prescribe it me and neither would my GP so i was getting off a private GP and paying for the LDN myself.He asked me why wont your GP prescribe it, told him he wont because its not licensed for my condition and he doesnt feel safe giving it me. He actually laughed and said how can this pose a danger at such a low dose, he then picked up the phone and rang my GP, a moment later he was telling my GP if he was happy for me to have LDN on presciption and to put it in writing asking for him to prescribe it on his behalf, obviously my GP said yes, and so now it looks like i'm getting the LDN from my neuro via my GP which will save me some cash After he put the phone down he said ive no experience of prescribing this for a neurological illness but if you are saying its given you more relief than anything you have tried upto now then its got to be worthwhile continuing with it. However he then said, i feel that the LDN is having a placebo effect and that he doesnt think it will last forever, and if it does stop working he/they will revue the situation then.He said he will get to know the bloods shortly and will write to me with the results and depending on the results there could be a strong possibility of a biopsy taken from my gut and a muscle biopsy from my leg.So there you have it, nearly 6 years down the line and all this could be due to becoming possibly celiac / gluten intolerant.Take a look at them case studies and emg results there's quite a few similarities with me for sure.Anyone here been diagnosed as gluten / celiac dissease? It maybe that for some of us, our neurological problems may precede the possibility of celiac disease

 

[Gloria123]

I found out I'm highly sensitive to Wheat. Interesting coincidence. And, I do think things have improved somewhat since I've taken wheat/gluten out of my diet. And, to top it off, it's not very hard at all. You can find gluten free food everywhere, including many restaurants (at least here in Denver). I'm having gluten free pasta tonight. You'd really hardly know the difference, they've kind of mastered these foods...Mitra

 

[twinTwosome]

Hi there. I have ulcerative colitis and see a gastroenterologist semi-regularly. He was very concerned about my BFS symptoms when they first presented as he had just lost a colleague to ALS. He tested me for Celiac (negative) at my request. He didn't think my symptoms matched the disease. Once I got a clean EMG he basically suggested I just chill out, because a clean EMG means you are golden. My three months (yes 3) of diahrea stopped magically soon thereafter. All that being said, I do think there could be a relationship between IBS, colitis, and BFS. those diseases keep you from absorbing nutrients properly, so over time, it could contribute to BFS symptoms. Of course I have other theories too, like vaccines and MSG. who really knows?Sorry if this post is slightly incoherent. Have a cold and just took some Nyquil, lol.Becky

 

[WindyCityGentleman]

Yes I actually tried this diet for 1.5 or even 2 months and didn't change a thing At that time I also had IBS and GED so I actually convinced myself that it was because of gluten intolerance or something similar but as I said didn't solve my problems. IBS actually seems to don't bother me as much as before if anything only GED. I'm also surprised that your doc didn't hear about LDN since it's quite popular in patients that have MS, nobody ask him before for it? I still do take LDN ( few months) and I do believe that it has beneficial effect on me but I have to admit that nothing extraordinary Hope, that it is gluten in your case,Stay Healthy Sev

 

[jerryTwo]

It would be maybe helpfull for me if you can tell me what LDN is?

 

[RainCat]

Thanks for the replies. Becky this neuro seemed to be very concerned about the neuropathy, neurogenic changes and the flat reflexes which when you read the case studies are all very similar to my results. Really hope he's nailed the cause.

 

[MsMaverick]

I haven't been tested for gluten intolerance yet, but my chiro feels that it might be worth looking into. He said that with my symptoms and having always been thin that there might be something stopping my body from absorbing nutrients correctly. I (and everyone else) always assumed it was because I come from a long line of tall thin people, not considering that it could be passing down through the family. Interestingly, my son has had problems with what his pediatrician refers to as reflux since birth which causes him to vomit occasionally at night or in the morning and I have wondered if he too might have a gluten intolerance as well. My question would be- can you go "mostly gluten free"? Or is it an all or nothing? Or does it depend on your intolerance level?

 

[LaurentHCH]

as i said in another thread. bfs in a lot of us has a digestion cause...

 

[christinasgirl123]

Hi MsMaverick, I am astonished by what you wrote because I myself come from a line of tall and slender persons. My sons both suffer from reflux since birth, so bad, that they had apnea from it and were stuck to an apnea monitor for the first 2 years. The little one was sensitive to cow milk protein, I myself have IBS since childhood, so does my dad (who also suffers from neurogenig benign stuff) and his mom. If you look closely at the forum. I find that BFS mostly strikes tall and/or slender persons. Glutene was not tested because you need biopsia in a coloscopy and I haaaaaaaaaaaaaaaaaate that, just thinking about that stuff to drink makes me want to vomit...

 

[herty18]

Digestive issues caused my BFS issues. It could very well be the number one cause if you combine that with some kind of event/ infection that kick started the disorder.The amount of gluten that you can tolerate is pretty small. I forget the number but it is only a few grams. I think that there are enzymes that you can take that can allow you to eat more gluten food if you have Celiac's but I'm not sure. There are plenty of good gluten free foods out there but you have to be careful becuase it is in alot of stuff.