FOR QUIX

[Melissa072]

Hi Quix, I am back again still suffering problems and needing any help I can get.
Last few years I can recall burning under foot and dizziness once.
June 07 8 weeks face pain, under eyebrows, nose, cheeks, jaw, 24/7 constant dull pain. All medication given none worked. July 07 tingling hands, feet, groin, back right leg. Hands, feet tingled 24/7 thru to Nov then stopped now comes and goes especially in heat, when walking etc. Groin always comes and goes. I have had a numbish feel to face since last June, under my feet are numbish and when I rub the tops of them they buzz and vibrate, I had weird feeling up both arms (gone after few weeks), weird sensation up both legs remains, I have had dizziness now for 6 months, more so when turning head anyway, twitching, burning more so in feet but also spots on arms, feel like my front breast area and whole back have been rubbed in with vix, I get cold spots like ice touching me, zapping in left knee when driving and have to bend it, mental fog, had mri done June 07 whole spine and brain, no contrast, (clear), then repeat in Dec (clear),  I asked radiologist why no contrast was used she said nothing was seen so they don't use it.(protocol) Neuro told me my thyroid antibodies were very high and said I have Hasimotos enc... (some long name) He give me 9 days of steroids and said he would be surprised if it didn't take away all my symptons, I had no change so now he wants me to take steroids again in hospital and have a L.P. Is this the correct thing to do, he told me to google H.E and said my symptons fit, I only found a few, I have worsening in heat he said H.E. is an inflammatory thing and that they all worsen in heat, so I figure it is so like ms why don't they have H.E. as a mimic of ms, I truly believe I have ms. Also 3 times xmas 06 and 2004, 2005 I experienced lower back period pain, I could not bend over, had ultrasound on abdomen, pelvis, ct of back etc  I couldn't work out if pain was lower back or abdomen/pelvic pain, I have also read  other ms's with this type of pain. Also for about 8 weeks I felt like I had a worm wriggling in my left eye on and off. With all these ms symptons and knowing that I have had a couple before and some being in definate 2004 whats the chances of ms with 2 clear mri's? I am waiting for dr to give me time and day of L.P. even if they find 1 band he said he can't give me dx of ms. Am I on the right track, my mri's were done on telsa 1.5 and I've never had contrast, this neuro apparantly don't use it, and I was the one who asked for the L.P. He is apparantly one of the best he's been doing this for over 20 years. Am I on the right track. Melissa

[jed9999]

Hello--I have had MS 36 years and I think you are on the right track getting more testing. An LP would be great to have done as it is one of the top MS tests.It often takes awhile for the testing to catch up with the symptoms. And the symptoms of MS can be so weird and obnoxious we think we can't stand it anymore--but we can. We so want to get back to normal--but what IS normal anyway? Certainly nothing we'll probably EVER know again if we have MS beginning! That is frustrating about the contrast protocal, but the time will no doubt come, and now doesn't seem like it would be the right tme for it to show up anyway. The neuros just don't seem to have the urgency we do. Try to put all this out of your mind after your testing is finished; just make up your mind to the fact your body isn't ready to reveal anything yet. That definitely does not make you crazy!!! Your body just isn't cooperating quite yet, I say! Good luck; try to be patient. Jane

[Melissa072]

Thanks guys, I definately have had ms symptons now for some time, I used to have to go buy sinutab off and on years ago due to sinus pain, now I wonder if it really was sinus pain, as last June I thought it was the same thing and bang full on face pain for 8 weeks that no meds touched. I also recall having burning in my feet years ago, also I have had dizziness before, just not so long like this time, it's been going on now for about 6 months. I also recall going for scans 3 times due to lower back period like pains, that also left. I am now left with a numbish feel to face, like the novocane has not worn off, under my feet have the same feel, if I rub my finger under my foot I can feel it, but it has a numbish tingly touch. Going outside in the heat, walking brings on the tingling down the side of my foot and in my toes that used to tingle 24/7 for 7 months straight before it subsided. I had mri brain and whole spine last July, then repeat in December, the lady who did it would not do contrast, I got dressed and asked the assistant when do I come back for contrast, she told me I am finished, I then went on to ask radiologist why wasn't I given contrast, she said she had to follow protocol and that if they didn't find any lesions then no contrast was used. I am so angry I should have told them I am not leaving until they give it to me, I had the referral for it. What's the chances of me having ms, I have had symptons that could be related ie, burning, face pain, lower back pain etc since maybe from 2003/2004 and wouldn't by then having 2 mri's done of whole spine and brain in July and Dec have showed something, or will it maybe only show up with contrast? This dr I think is one who diagnoses by the book, he has already told me he can't dx me with ms even with 1 band. I am going into hospital next Friday, and will be out Sunday, he wants me in there 3 days and 2 nights so he can also try the steroids again and give me L.P. I am worried the L.P. is going to confirm my worst fears, and show high bands, then on the other hand I'm concerned if nothing shows as then I fear what on earth is wrong with me, this is certainly not all in my head, if the case be L.P. neg then I will insist on another mri with and without constrast, but first I just want results of L.P.  With L.P. how many bands indicate ms and if someone is not in a relapse will it show, or can the bands change, meaning can they be a 1 today and then 2 months later be a 4. Am I on the right track with having a L.P. I had to ask for this?
Should I have had contrast, does no contrast not show things up, if I have had symptons for say 4 years now shouldn't I have old lesions showing up.
Thanks again for all your help, everyone. You guys have helped me more than the 2 neurologists I have seen, and the numerous dr's who have fobbed me off.
I don't like to talk to my friends about this, I don't want to feel like I am moaning about my health, so thanks for listening, and all your advice, care and support.........
Very much appreciated and needed,  Melissa

[Quixotic1]

Hi, Doc, Good to have you back.  I have you in my sights for a good answer.  I need to learn a little more about it.  From my reading yesterday Hashimotos Encephalitis is extraordinarily rare.  Less than 50 cases reported in the last 45 years or so.  So it's probably not listed, because it is a REAL rarity.  All the things I read listed change of mental status, somnolence, seizures, etc as the main symptoms and they did list "focal (localized) neurologic problems" also, but definitely as a secondary.  

I need to read more to make sure this is good info and I'll have more to say later.  If I don't get to you in a couple days, bump yourself back up and rmeind me, please.

Quix

[cjacks]

Hi Melissa,  

I don't know  much about the medical end of things but wanted to welcome you back.

I'd say the LP is a good thing to have at this point, I'm waiting for my appt. date.

I want you to know that I hear your frustration and do sympathize greatly with you

Hang in there, people have not felt well or be away today . I'm sure someone will be along soon to give more help.

HUGS and PRAYERS          Jo