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Old 01-19-2008, 07:27 PM   #1
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severe pain whole leg and whole arm with numbness

sever pain whole leg and whole arm with numbness, this pain is so bad it wakes me up, my legs can be burning to no feeling at all. my arms are so numb it takes while to carry things or my self every day now for past two year.
Shrunk over one inch, I have over 7 brain lesions. was told not ms, as there is no cfs active.

I have colitis, micro scopic ulcerative colitis
I am a female on a double dose of porstate medsnas I found out I can not feel bladder full, then for a year in 05 had bladder infecton the whole year,
Swithed insurance, got the mri, got the urodynamic testing, but basically other thanbrain lesions the for sure never loss in bladder, the trbout (with proven tests) in colon, and legs, and pain in arms nect ect, and the fact i did shrink frin 1.5 inces down in a year and went from 125 to a range that is 95-104 in last year, and pain I can not bear,as all.
I was given FEnteyl, only 25, still feel a ton of pain, but do not want huge dose as some one will take it away and I will live like a maniac vs the person in pain I am. Any ideas why you would go from her for answers. I do not type welll at night welll as my eyes go double and now I never drive except very local or not at all. I am wiped out and do not feel I am safe to drive. So stopped. Only 1000 miles an my car.

Now they say it make it up in my head, as the brain lesions do not have the cfs fluid and ignore all the possitive tests, so I am heartbroken. i am sure lots of people are told to go take anti-depresants for pain, and they don't work, nor does nerontin, in fact for me they make me insance. I am disappointed in the med ical opinion to ignore my facts now. could it be the doc does mknow,

What he did, no na me i decide to put me on a Fentenyl holiday, and by end of day one of the awful Holiday I was really insane, as my pain had had a break,

So now I wont tell my nerro I hurt as I am afraid of what he will do.

my other doctor and the pharmmcies arte in disbelief, and my other doctor stepped in, to help, but he is pitch hitting to help me, as he knows the truth is there is pain, and the pain is an elephantiant in the room. I can not get on with life. I have SS and Ltd thank goddness, as there is too nt docs an diagnosis, however to be dumped as my nuero is freaked out by the fentenyl and he prefers all patients embrace the pain, and suck it up. I do not believe this al a. Any way, cn not see, want to see I you have any ideas from me here in SF. I will never ever in my live go to UCSF though as that is th e palce thi brain doc sent me, hoping to covertly get me into the shink ward.. I am lost and veI have

 
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Old 01-19-2008, 07:43 PM   #2
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Re: sever pain whole leg and whole arm with numbness

Hi, Simon. I am very sorry to hear what you're going through. I sure can't tell you what's wrong but in regard to MS, just want to clarify some things.

Lesions in the brain can be caused by several things besides MS. Although there CAN be atypical MS in the way it presents itself, MS lesions are normally located in certain locations and have an ovoid shape. It also can be difficult to dx because sometimes MS lesions can look like those presented in other diseases as well. I believe the fluid you're talking about from a lumbar puncture (aka LP or spinal tap) -- are you saying you had one and the results weren't positive? Not all MS patients will have a positive LP.

Do you feel you have MS or are just still searching for answers in general? Is the doctor you're seeing a regular neurologist or MS specialist?

I'm sorry you're not having luck at UCSF. It does sound like you should see a new doctor since this one is not giving you the answers or treatment you feel you need -- and maybe not testing, either (not sure about this from your post).

Last edited by Bearygood; 01-19-2008 at 07:44 PM.

 
Old 01-19-2008, 07:51 PM   #3
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Re: sever pain whole leg and whole arm with numbness

SIMON,

Welcome, your story is all to familiar as many have been in your shoes.

The best advice I can offer is to see a MS specialist.these can be found through your local MS society.

You definately have neurological deficits occuring.

get copies of all the test you have had done including the mri films.

make a time line describing your symptoms and when they appeared and if anything brings them on or intensify's them.

was your mri done with contrast and without.Did your neuro do mri's of the c-spine and the thoracic,any evoked potentials.A emg/ncs to see if your pain is neuropathy and if your nreves are conducting to the muscles correctly.

many neuro's do not beleive that MS causes pain,I'm fortunate that my neuro beleives in this.

T

 
Old 01-19-2008, 08:55 PM   #4
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Re: sever pain whole leg and whole arm with numbness

Wow, thanks, it does feel far to MRIs to me. as well.

Due to all the real facts, and the fibro stuff, does not fit me, as the nerves are not killed. I have recently begun with bowels that at much more difficult, last two years, so that life is shutting me in, and eating and the most basic of all is going.

I wish I had a recommended super nuero who did believe in ms with out the positive lumbar fluid. He does not specialize, he does believe in pain help but only my weekly injections of non-narcotic lidocaine with steroids, and he will do circumference of head, down my back, my jaw, and side of head of botox for migraines. We know from last MRI, and the lesions say little change, but do note the cervical spine.
The MRI series in 06 showed degen all over, bulge stuff all over, some steno sis, and I fear steno sis is the legs but know nothing about it to say but just know I wake up crying in pain every single night, and on the fentanyl, and I do get to take two shots of Toradol, husband does give, but if you have had this, it is short term too.

I like the man, I care he cares I am not a drug addict, and if and when I do go off, ( but I will not let him Rx it, as his vacation idea) was a bit too quirky for me, as the med is for long term pain, not pain you do surprise hurt for 3 days just to remember how bad it was for the last 1 and a half years.

Yes, I am looking for a person to tell me who is super. I know in Canada, my symptoms would have me diagnosed, and the horrid respect we lose in the search would be with me.

Take care, and thank you.

If my Blue Cross would pay, I would go for another opinion, but right now I continue to deal with the after math of his attempt to put me in and I am now forced to go to a super shrink for drugs, and of course I won't take SSRI they love, and my gastro got pulled into the mess at work as I struggled;ed and did see my opposing counsels report as I did just a month ago, 2 years from the day they started to watch me with gait with pain, with speech, my bowels and who would talk aoubt this as it is so hard to at work,, were known, but I did not ever tell them I could not walk run or stand, without tiptoeing for a to b spot, as the work place basically told me , we did say I was useless. 32 years, same group of traders, and they watched me fight for my life and pill change crap and none of them did a thing except save my goof ball emails, and geez, just the past week in re-reading seeking to preserve my retirement and medical for live as I have 3 kids in private school, and I cover medical and can't buy it for me or one other child. (a it turns out we own an insurance brokerage) I worked in energy trading, not the same) I had a license to sell for papers only and the family business if husband were to get sick or die, I would be able to help.
Not know, I must get up at 2 am to fight the war in am and take 400 mg provigil, and my gut meds, my heart meds, my urine meds, and my probiotics and fish oils etc.
I do have good coverage, as I am on SS and with that, my company will not fire me, for being so stupid and sick, but have said they will if I lose SS. it is legal they say to fire useless sick folks.

Again, any ideas on good docs for this, I am game, and I have the coverage.

 
Old 01-19-2008, 09:27 PM   #5
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Wink Re: sever pain whole leg and whole arm with numbness

Quote:
Originally Posted by Bearygood View Post
Hi, Simon. I am very sorry to hear what you're going through. I sure can't tell you what's wrong but in regard to MS, just want to clarify some things.

Lesions in the brain can be caused by several things besides MS. Although there CAN be atypical MS in the way it presents itself, MS lesions are normally located in certain locations and have an ovoid shape. It also can be difficult to dx because sometimes MS lesions can look like those presented in other diseases as well. I believe the fluid you're talking about from a lumbar puncture (aka LP or spinal tap) -- are you saying you had one and the results weren't positive? Not all MS patients will have a positive LP.

Do you feel you have MS or are just still searching for answers in general? Is the doctor you're seeing a regular neurologist or MS specialist?

I'm sorry you're not having luck at UCSF. It does sound like you should see a new doctor since this one is not giving you the answers or treatment you feel you need -- and maybe not testing, either (not sure about this from your post).

 
Old 01-19-2008, 09:32 PM   #6
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Re: sever pain whole leg and whole arm with numbness

yes, I do feel it is MS or close in the area.
I do want to find a good doc, but UC is toomuch for me, too many people staring at you, it is a school, and I a not in the mood.

I am in the mood to take good solid advice on who to see though.

I know the fluid can be void, but I have an oldie but a doodie, his intentions are good, his focus is not MS though.

Thank-you

 
Old 01-20-2008, 02:13 PM   #7
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Re: severe pain whole leg and whole arm with numbness

SIMON,

Some of the teaching hospitals are your best!!!!!! Many can schedule test and get them all done in the same day.

MS is a diagnosis of ruling many disorders out.

If you have lesions its best to have that avenue checked.You already stated that you beleive its MS or related.

Theres several diagnostic test they can run to include or exclude MS

With all the pain you are experiencing have they done a EMG/NCS to see if any of this was neuropathic in origin.

 
Old 01-20-2008, 02:25 PM   #8
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Re: severe pain whole leg and whole arm with numbness

Simon, I don't have the name of a specific doctor for you but the MS Center at UCSF really does have a good reputation. If you'd like, I can try to get a recommendation for a specific doctor but it may turn out to be one there. Let me know.

 
Old 01-20-2008, 03:31 PM   #9
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Re: severe pain whole leg and whole arm with numbness

I must say this board is amazing. A lot of folks do know a lot and together the response is overwhelming, to the good side.

Yes, you know, I am open to a person's name. I do live (this is true) five houses from the hospital hill top. We rent to the students, as they are the best.

For me, I was afraid of what my doc did, but he in fact does not work at UC, and he is good, however as you can tell a bit of odd stuff has taken place, and I am waking in dire pain.

A pediatrick heart surgeron lives next door to me, and he knows my bladder trouble, and told me it may be worth asking my chinese (china town urologist) to teach me how to self cath> He said he does it, when he has surgeries that last 18 hours on the tini little babies he works on.

For him a need as he can not leave his client at times for 18 hours and his staff, feed him ice cubes water, via lifting mask and that is it to keep him going. He said all systems shut down, really so other issues are not there, any doctor doing this for a living would know I gues, but for me, it would be so much easier to go out, as I can not pee out of the home, for likely nerves but at home too, for a half hour at a time.

you are kind, and yes, a wonderful name would be fine.
I did dilvere my middle child there and back them when I was mid thirties I was seiing my colitis roar about 1-5 times a year but recovery was a week to a month.

Its a good place, it s the place that he had hoped they would send me and they found no reason to, but my word, I was so scared as the ER is not where I would ever go for a an inpatient eval.


I am doing an out patient, (due to this silly and annoying issue, but know these things happen, that I may not have MS, but have lots of stuff going on, and its not falling with the fibro, as my case does have nerve loss and bowel disease, my fragments have been to 3 hospitals across the states.
I got the doc I want approved to see, and he on the net sounds good for brain stuff, and despite my list of maladies, I hope to gain insight to my brain power, and he knows going in, I am not looking for a drug. I am looking to see if I slurred, if my meds could make me and why could I not walk.

The numbness is not knew on leg or arm and my neuro guy treats meand has seen the tremor in the location at times.

I don't think I had any more tests other than the fluid. I say this as I do not know if I have had them, or what they are.

Thanks
simone

 
Old 01-20-2008, 04:09 PM   #10
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Re: severe pain whole leg and whole arm with numbness

Simone, I will see what I can do. In the meantime, I have a project for you which I know others will endorse. Start working on getting copies of your test results (and finding out which tests were done) and pick up all MRI films from your doctor. If you're unsure of which tests you've had, just speak to the nurse in the doctor's office. Whatever they give you should include the radiologist's reports for any MRIs (and any other radiological tests) you've had. In the future, ALWAYS ask for the reports when you go in. I always request that test result copies (including blood work) go to not only the ordering doctor, but also to myself and my PCP.

Now is a good time to get started on this because if they ask you why you need them, you can truthfully say that you're trying to collect everything for your personal records. You're entitled to them anyway, but sometimes doctors have this proprietary attitude (do you know what I mean?) and may be all up in arms because they suspect you're going to look elsewhere for help. Not that there's anything wrong with that either (not to mention that's what you ARE going to be doing!) but if you do it now, your answer can be truthfully simple. You can just say "They're for me."

I'll supply names when I get them. As per board rules, I can only give you names and location but that should be sufficient.

Last edited by Bearygood; 01-20-2008 at 04:10 PM.

 
Old 01-20-2008, 04:53 PM   #11
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Re: severe pain whole leg and whole arm with numbness

You will be happy to know, I do have all records. I have ltd and SS papers and resonses as well. Scanned and in hard copyl Scanned most all written reports for this reason, so I go to folder and print.

I have a very busy week, this week will be one whre driving all day on some days I will flop. I have legal matters due to my work attempting to bump my lifee in the toilet not n=knowing me for 22 years, ws not enought to lend a hand. I have to focus and take cabs to keep the pace. I know I am seeing double and am too tired and I k

I was on top of all that. Again, really can not see. So annoying, so I have to log off, and go back to the bed as I need to start to feel some wake full ness Soon and it is not ther at all.


I am so wiped out, and no reason fo it at all. Dropped as a stiff stick bad FRiday, but has been me for 2 years.

 
Old 01-21-2008, 11:48 AM   #12
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Re: severe pain whole leg and whole arm with numbness

That's great, Simone. Okay, so far I have 2 names for you:

Dr. Crabtree and Dr. Pelletier, both at UCSF. I'm not sure if these 2 are regular neurologists or MS specialists but you should be able to confirm pretty easily. (In the case of Dr. Crabtree though, I'm fairly certain she is -- and BTW, she was described as being "compassionate" so considering what you've been through, that might be good.) If I get more info. I'll pass it along.

 
Old 01-21-2008, 09:07 PM   #13
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Re: severe pain whole leg and whole arm with numbness

Quote:
Originally Posted by Bearygood View Post
That's great, Simone. Okay, so far I have 2 names for you:

Dr. Crabtree and Dr. Pelletier, both at UCSF. I'm not sure if these 2 are regular neurologists or MS specialists but you should be able to confirm pretty easily. (In the case of Dr. Crabtree though, I'm fairly certain she is -- and BTW, she was described as being "compassionate" so considering what you've been through, that might be good.) If I get more info. I'll pass it along.

I will call as soon as my energy will allow and time allows.

Oh my, very exciting to hear. She or he will know mine, but he does not work there, but does have 5000 patients.


Well known man. I like him, too, just not what happened recently. Despite the two years of pain, I was making it. It has been hard. So yes, the compassion is a very important part of my care.

Oh thanks so much, have no idea how you know or who you are, but I am very pleased.

 
Old 01-21-2008, 09:12 PM   #14
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Re: severe pain whole leg and whole arm with numbness

My pleasure, Simone. I'll post more names if they come along.

Please keep us posted!!

 
Old 01-29-2008, 12:12 PM   #15
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Re: severe pain whole leg and whole arm with numbness

I am going to call today, scared as the chance of being mixed up in a huge system scares me,. but my pain is off the charts, and I am going to call the office. I am really scared of UCSF after the doc attempting, (they had no interest in taking me in for mental eval) but I am so afraid to speak to the guy now I realize I have to find someone that will deal with me, and my real pain. I don't know what to do, other wise, you go crazy. Trying to find the link to all the responses, and it has been days since on as my eyes blurr so bad, and by night, if I have attempted one stupid thing are too fuzzy. How do you find all responses in this very good board I might add, but that is one thing I can not figure out, responses in one place, Any idea.

Do you have MS, and if so, did you test for all the stuff, lesions, cfs, and the other tests, (I do not know what these other tests are), but mentioned by many who know the disease.

I have read and reread the list of MS and Fibro. I do not have Fibro, as Fibro does not come with lost nerve sensation at all. But I have read people report they are so bound up they are in chairs.

I was also told too, that the neurologists, behind our in pain bodies, know the Fibro thing exists, but its always joked about, (a person in the scene told me this, and this is so disturbing to me to hear, as for sure, I am going to a shrink and at 650 a pop he has been approved. Since I can't take SSRI
s they are already wondering if I am bi-polar, and its making me crazy. I suspect many people don't feel well on the ssri, stuff, but like in my case don't know it.

I knew my body was insane tense, and I was the walking dead with a horrid headache, drooling and slurring, but I knew that.

What I did not know was I was insane when I wrote, and for 6 months I was writing like a woman without a brain. To think, after reading my notes and emails how loony I appeared, but not know it, till clear of mental drugs, but in severe pain, and finally on Fentanyl when he ripped it away, and I was so bothered not that I did not have Fentanyl, but that I had said, after been in intense, no sleep pain, despite loads of sleep medications, as the pain rips through any put me out med, except general anesthetic, but why give it to me, let me know have it was to fell a bit less pain, and then take it away for a vacation , to me, it was a nut treating me. Not a doc. What doc, would put a patient into detox, every 2 months, and in surprise fashion put them on holiday for 4 days of hell. Then call the patient a drug addict, it is just so weird. I am on it, don't feel safe in my pain relief, as it resides anyway, but jeez, I am not getting it from him, I am getting it from a DR. treating me for my most serious ailment, and knows I clearly asked to be given pain help only if I was to stay on, not to do what he did. To me, I think since I have so much pain, on top on my low dose, I will know the day the patch, (25) for 100 lb person) is not needed as the pain will not be with me, day two of patch change day, Seems like one day I do have very good relief. the two other days, are difficult. Stopping is hell. Any way, I believe I kept you email Link to the doc, so will attempt that way to find your great and very thoughtful and remarkable response. To have someone do that much research for a stranger, is unreal. But today is a cry all day - sort of day, and I have to try to get help. as I am not okay at all, and this whole shrink thing, given I see one, is making me upset, as I have zero interest in pills as they are not for me, but I know they are for many. I wish I could be one of those folks. Happy, gut, pain, sex drive for my tolerant husband, (I have no clue how he has hung in there, but grateful his interests are broad, and he is a family guy and the kids are at peak need as both are high school an college, cute, busy and needy.) I do wish I could work, but know, after 2 years off, and not a minute to predict my bowels much less this 2 years of pain, and sleeping on the spot, (I fall asleep on the bus, with in seconds, its as though the lids are being pulled down, and that is not meds, that was way before meds, and my mind is not clear) so I just get lost. Very embarrassing to under go change that fast.

Family does miss the 80K, and the perks, and I miss energy and no pain, and money to spend with the ability to get out, when colitis, was in control, as the pain and fatigue had never hit till year of 05, in that way, just a minor shake, a tremor that was not fun, but I was really used to, and so and but we have my health insurance, from company I worked for under the LTD, and that is a saviour. I can only pray the good folks at SS, let me be, and not hurt me, but I have been told the docs do the work, and the evidence is what they want, its when you have just a list of problems, no tests, no docs and you seek SS, well, of course, you don't get insurance that way. Its better than a kick in the but, and my experience has not been near what I had heard others say it would or could be, all pro, and it was actually fast. But, the reviews when you are mid 50'd will happen, and that scares me to death, as you all know insurance, cost tons, I can't buy it, and I spend almost 20K on it out of pocket last year, even though I have great coverage. out of pocket and with great insurance last year was my entire SS check. or so, or very close. I do not know how my husband does it, nor do I know how any one of the sick people trying to get SS manage. It is something else. Somehow, the answers seem to come to all, as we all have the money, in my case, my husband still pays for the wireless, and we need it for the kids and for him, as he works at times at home.

Sorry, Been days since I talked and sad to say, and you may know, my friend is often the screen and the screen is too small, and I need a big one, but no screen fairy is coming to help with that. Oh well.

Signing off, Simone in San Francisco is really not well.

 
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