Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Aren't I the lucky one?

Hi all,

I have posted a couple of times about the neurological problems that I began having last November. Weird sensations from my feet to my ribcage--the feeling of having sand in my shoes and tight bands around my knees and ribcage are the main symptoms that I have now. A neurologist says I have myelitis (inflammation of the spinal cord at T4-5) which he believes is related to my AS. I just came back from a two week visit to Indiana and had the following letter from the neurologist (a copy of the letter he sent to the GP):

Quote:

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Further to my prior correspondence I have now had a chance to undertake a literature review. There are in fact 1 or 2 cases reported of patients with Ankylosing Spondylitis developing inflammatory cord lesions. There are no more than a hand full of cases but it does suggest that there may be an association here.

I am interested to see that Mrs Herdman is listed to see Professor Moots when he comes across in August and I would be very interested to hear his opinion.

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I had no idea who Professor Moots was as I have not yet received a letter to say that I have an appointment with him. I googled him and it seems he is quite a renowned rheumatologist. I also have no idea how I came to be "listed" to see him as the referral doesn't seem to have come from the neurologist. Can anyone in the UK give me a clue as to how this works?

Anyway, I'm not really complaining as I know that many of you deal with much worse. I just find the symptoms irritating and the letter from the neurologist interesting. Aren't I special being one of "a hand full"?

Connie

Hi Connie, sorry to hear your having probs but a small consolation is that at least when something "unusual" happens, at least a person seems to get attention as an oddity It seems there are more rare things that can crop up w/AS than we know about...I just had one that was new to me. Aside from all that, hope you're well and that someone notifies you of your appt Is it common practice there to receive letters from your dr? Is this diagnosis arrived at through specific tests? Best wishes

Connie,

I remember your post about some of the things that were happening and I am not suprised that it's spinal cord related.

I'm sure medication will help,

Dave

Hi Connie,

I am going to throw out a slightly different interpretation of your doctor's letter when it comes to being "listed" with Dr. Moots. From what you said, i.e., you aren't sure how you came to be "listed" to see him, I am under the impression that you think that someone has already set up an appointment for you to see Dr. Moots and you're waiting for the referral now. The way I read rhe letter from you doc, it sounds like he cc'd a copy of it to Dr. Moots' office and is basically asking his staff to make an appointment for you with Moots. In the letter where he said, "I am interested to see that Mrs Herdman is listed to see Professor Moots when he comes across in August. . . ," I think he is using "interested to see" as a synonym for "I am hoping that Mrs. Herdman is listed to see . . . ". That is opposed to the other interpretation--which is the one I think you went with, which is totally understandable and quite possibly correct (meaning I would be wrong)--that based on his earlier talk with Moots', that Moots' staff already made an appointment for you. In that interpretation, he is saying "I am interested to see that Mrs. Herdman is listed to see . . . " as a way of saying, "Hmm, I see you've made an appointment for Mrs. Herdman to see Dr. Moots after I talked to the doctor--I didn't realize you were going to do that (or, if he did know, substitute "glad to see that" for the last part of that sentence). And, whether he did or did not know they were going to make that appt., he is now asking to see the results of that appt. after it happens.

Phew--wow, I hope that made sense, as now that I've written that, I realize it is very hard to explain in writing about how you think someone might be reading a different meaning into something that was written to them by a third party. And, there is the very good possibility that I am the one who is having the misunderstanding, Connie, in that I might not be interpreting your reaction to that letter in regards to any future involvement by Dr. Moots! Basically, I hope I haven't thoroughly confused you; the best case scenario is that I DID correctly interpret the way you were understanding the letter and have now offered you another way of looking at that letter. Worst case, I've completely baffled you and anyone else who reads this post! Sincerely hoping it's the former! LOL

Either way, glad your doctor seems to be taking your complaints seriously and is following up with what seems to be a very good doctor, and I hope you start to get some answers from someone in the very near future.

Brad

Brad, you're brilliant! I would never have thought of it that way. It makes perfect sense, except for one tiny little thing...I misquoted the letter...oops ...and he actually said, "I am interested to hear that Mrs. Herdman is listed to see Professor Moots..." so that makes it sound as though he had nothing to do with it. So who did? I've no idea. And to make it more mysterious, he cc'd the letter to Dr. Gosh. Who's he? Gosh, I don't know...

Thanks for your input, Brad. I really appreciate it.

Connie

Thanks for your reply, Dave. I do feel that the gabapentin (Neurontin) may be helping a bit. My symptoms aren't gone but they seem to have "faded" a bit. I'm still gradually increasing the dosage and no side effects yet.

Connie

Hi Connie... and Brad,

I followed your line of thinking too Brad and suspect you are right. I think substituting one word makes the interpretation easier... "I am interested to hear that Mrs Herdman gets listed to see Professor Moots when he comes across in August and I would be very interested to hear his opinion."

I think instead of 'is', the doc actually means 'gets' (as he is in process of making this referral) ... using 'is' might simply reflect more of a direction and anticipation, as it hasn't been confirmed just yet. It sounds to me like this high end Rheumy is very busy and comes only so often, and that they are hoping to 'squeeze' Connie into an already tight schedule. My impression is that the neurologist is stating that they have or intend to make this referral. Oh and I think 'hear' works this way too... he is interested to hear (back from their office) that the referral appt has been set... soon.

I am sorry to hear this news about spinal cord inflammation Connie. Thankfully it really sounds as though you will be getting seen by the best and hopefully be very well cared for.

Hugs and my best to you!
mig

Hi Snowshoe,

Just to try to answer your questions briefly...The way the medical system works here is that everything goes through your GP, so if you have a problem such as mine you go to the GP first. Of course, I realize that that would be common practice anywhere. I just mean that you can't bypass the GP and make an appointment directly with a specialist as you sometimes can in the U.S. Appointments with specialists (or consultants as they're known here) are then set for you and you are notified by letter of your appointment date and time. That's why I said I hadn't received a letter about an appointment with Professor Moots yet. As far as the neurologist sending me copies of the letters he sends to the GP is concerned, I don't know how common that is but I'm really glad that he's keeping me informed in that way.

My diagnosis was made by an MRI of my thoracic spine. The lesion showed on the scan as a white area on the spinal cord. The idea that it's related to my AS is basically speculation on the part of the neurologist based on my medical history.

Best wishes to you too.

Connie

Mig and Brad, you could very well be right. I had noticed in previous letters that this doctor has an odd way of phrasing things. Thanks for your help with the interpretation.

Cheers,
Connie

Now then now then you lot, me being english and all that........how you know Moots is a Mr????

may I moot the idea that in fact far from being a synonym that this professoress might well be a man as well as a woman,,,,errr, think am losing my thread here


anyway me dears he is a he and he is from liverpool and have sa lookat this


http://www.aintreehospitals.nhs.uk/research_and_development/r_and_d_professor_moots.asp