Iwant to ask but not sure if anyone can help...

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Jareth
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/13/2008 10:43 AM (GMT -6)   

This is long because I need to explain my situation in order for you to understand my question and where I am coming from.  If this is not appropriate I appologise I am just confused an don't know who else to ask or where else to ask...

 

I was diagnosed with MS on June 22 2008 in an ER visit where Optic Neuritis was found.  It had been speculated that I might have MS before but a previous Lumbar Puncture in 2007 and tests were negative (ones done after this were positive).  The doctor assigned to my case I saw on July 25th for the first time.  I had 3 solumedrol infusions starting on the 22cnd and then on july 4th another 2 since my eyesight got worse again.  When I saw the doc I told her all of my symptoms which were pins and needles in hands and feet, burning, extreme pain in hands legs and feet on a scale of 6 to 10 depending on the time of day or exertion, and partial lost visability in my right eye.  I also have to go to the bathroom alot.  She gave me a pain med and a muscle relaxer and that was it.  nothing for symptoms.  She did write a prescription for cymbalta but I took it and that night it made me sick and i called and told her the next day she said alright and that was the end of anything for nerve pain.  She decided to try to get something approved by the insurance but they denied and she never tried anything else.  She had me make an appointment so i could research which injectable med I wanted to use.  3 days after July 25th I had an exacerbation where my lower abdomen began to get numb and my hands were so painful i couldnt write or do anything for myself.  I called her office to leave her msgs and they said it was normal if the symptoms got worse to call back.  From the first day i called to the 8th of august I called 6 times, finally when the numbness had reached over the tops of my breasts and my hands were where i couldn't use them at all i got a solumedrol treatment which was only because i spoke with the infusionist nurse who prompted the doctor.  I had a reaction to it but its not clear if its from my WBC being low but the doc thinks I am allergic and says I cant have it.

 

I went to see this doctor on Aug 12th and it was the second time i saw her and she said that she can not help me or my condition.  My nerve pain and condition is too extreme a case.  I asked what I should do if I need to talk or if I have an exacerbation she said ride it out dont call.  She gave me another docs name and had me make an appointment with them.  I couldnt see them until sept 25th.  Even after telling her about my hands she said to ride it out and offered no help for me not even a number to call.  I contacted the MS society where they gve me a list of numbers so i can get help because they said since i cant use my hands its debilitating and not normal. The doc also told me at the end of the appointment that i was probably experiencing arthritis and that she thinks I was overexagerating my symptoms saying something along the lines of "I know these things seem like they are very painful but they are probably more bothersome than anything..." 

 

My question is...Should I hold this doctor accountable for not giving me the care I asked for when I needed it?  I have been on no meds for my MS symptoms and in the middle of an Exacerbation for 2 weeks with no help...what is your opinion?  I also am a receptionist and my hands are my livelyhood so not having them right now is impacting me. What should I do?


casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 8/13/2008 4:24 PM (GMT -6)   
Hello! The same happened with me. I had the optic neauritis and was hospitalized in may. I got 10 days of steriods (5 day injections) which helped the ON. Once i stopped the steriods and got a lunbar puncture, my whole right upper body went completly numb! Also i was bedridden for 2 weeks due to the Lunbar. My right arm/hand was paralyzed for almost a month and my fingers felt WAY worse then pins n needles, more like rusty metal.
Its scary i know. Also they gave me no meds either for 6 weeks. I was pretty angry to say the least! So i guess it might be common after using steriods that they give you nothing as we suffer.
Now i started treatment and also take Lyrica and provigil. Now i have 90 percent of my strength back in my right arm/hand and am able to use it fully again. I still have minor numbess in just the bottom of my hand and feet but its childs play compared to how it was.
You should get complete feeling back in MOST of your body and most feeling back in the Ms problem spots. Ask about lyrica it did wonders for me for healing the EXTREME numbness.

Jareth
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/14/2008 9:32 AM (GMT -6)   
I left out this part because i didnt think it was that important to the question. The med she tried to get approved by the insureance WAS Lyrica but they denied it because they needed me to try a tca first. That is the only requirement (I know because after the first denial I called and asked them) she kept appealing the drug Lyrica without trying a tca first. finally on this second/last visit she wrote me a rx for amitriptyline (a tca). So now that she is no longer my doctor she does the requirement...lol.

Is Lyrica really that good? The pain is my concern because I cant do everyday things now like fix my hair, chores, open medicine bottles, typing this took me ages in fact. My boyfriend helps where he can and at work they are patient but being a receptionist who cant do her job fast anymore is very frustrating and they keep asking me if I think I will be able to handle my job duties and my hands are digressing not getting better at the moment so what do I tell them ya know?


Tell me more people what do you guys do? How do you adapt? What do you do for pain? I am allergic to cymbalta and gabapentin and baclofin...what else is there?

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/14/2008 11:21 PM (GMT -6)   
I too had such bad pain that I did not know what to do. Over several years the painful spasms were 10/10 and getting worse.  I could not lie,sit walk or stand without intense pain.  Pain on the skin was beyond 10/10  The spasticity was also getting worse daily, I felt like I was on a rack.  The neuros would not/could not help me.  My GP tried gabbapentin, lyrica and the rest but, like you, I was allergic to all.  MS soc suggested I try local pain clinic and I had to wait months to get to see them.  Their team said a baclofen pump could be good for me, (other neuros never mentioned it)  I did the trials and now have a pump.  The result has been positively miraculous, spasticity much improved and intense pain gone.  Pump is particularly recommended for people who are allergic & they told me that I am getting 1/300 of the tablet dose.
 
BUT the pump with baclofen did not make my hands stronger or stop the dull ache in my behind.
 
I wish you luck and sure you will find a solution just remember to think outside the square.

casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 8/15/2008 2:50 AM (GMT -6)   
popsie seems to have some good ideas, especially if you have certain allergic reactions. I havent taken or even began to research any of the other medications, so i cant give any input. The lyrica definately helped with alot of the pain and numbess for me, it doesnt mean it's right for you, but could be. I just take a 5 mg hydrocodone for the extra pain and migraines, sometimes i'll break it in half and take it with an aleve. Aleve (naproxen) for me is 10 times more effective then aspirin or ibroprophen as i try not to take many hydrocodones, but ill take maybe 3-4 in a week as needed. Which is very light compared to some people.
O yea pardon my ignorance whats a tca?

OnSuboxoneTherapy
Regular Member


Date Joined Aug 2008
Total Posts : 21
   Posted 8/15/2008 10:26 AM (GMT -6)   

This post is for Jareth. I was wondering what synptoms you had in 2007 that prompted a negative result back then and a poitive result in 2008. Did you have a MRI that showed plaque and a negative spinal tap? My MRI last month showed 1 plaque (lesion) in the white matter of my brain and 2 of the 3 spinal tests came back negative. The one that came back positive was the myelin band protein. This protein shows that myelin in my body is breaking down. I have lost the ability to urinate and have had to self catherize since 6/19/08 with symtoms of numness and tingling in my feet and concentration problems. I still don't have an answer yet as my doctor is out of the country and I don't have an appt until 9/22. Any help would be much appreciated and I am sorry you are going through such problems.

 

 

Kim


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/16/2008 6:54 AM (GMT -6)   
Jareth, I found that Progurt really helped my hands.  Typing is much improved and also button fastening.  I was allergic to everything synthetic - drugs (including baclofen), supplements, chemicals then all foods.  I found a clinic that helped the allergies a lot enough for me to have the operation for the pump by desensing to all drugs to be used and all aneasthetics.  Still cannot take drugs or supplements much as the allergy seems to build up after a bit but at least I can eat everything.  What I have found is that I am less allergic if it does not go thru my gut so you can have a magnesium cream made up by a compounding chemist with DMSO that can be rubbed on and really helps painful spasms.  Also baclofen in the pump is going direct into the spine so seems OK.  I have read there is a product called Soothanol that is also rubbed on t he skin and is good for pain.  I was forced to try anything because I was so allergic to usual med. 

peaceintruth
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/19/2008 11:22 PM (GMT -6)   
I'm new to this board (and to MS) but I know all about the pain issue.  Before my dx (Oct. 07) I had severe itching and pain in my hands.  In Sept. 07 I had an attack (complete numbness on the left side of my body) that progressed to numbness and weakness throughout my body.  I won't go into all the details but I was dx'd with progressive MS.  I soon developed intense nuerological pain in my forearms, calf muscles, and the bottom of my feet.  I was in a panic and heading for depression.  My nuero was absolutely no help but a naturopath was recommended to me.  It's been a long haul but things have improved dramatically.  I'm now on the Swank diet, take a number of supplements, am receiving chelation therapy (for a very high mercury level) and taking LDN (low dose naltrexone) and doxycycline.  The LDN took away all my pain within 2 weeks of starting it.  It also increased my energy and decreased my anxiety and depression.  I recommended the LDN to a friend who had just finished chemo for cancer and also had a lot of nuerological pain and it has taken away her pain also.  I've been on it (4.5 mg.) since February and it has been great.  As far as I've been able to learn, it has no lasting side effects.  The pharmacist at the pharmacy where I purchase it says that a lot of drs. are prescribing it as a pain reliever now for ms, fibromyalgia, crohn's disease, cancer, etc.  It's not very expensive and you just take it at night before bed.  I hope you get some relief from your pain.  I've been there and know it's awful.

Jareth
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/21/2008 10:33 AM (GMT -6)   
Sorry it has taken me so long to respond but my hands...
 
I will address everything asked and stated...
 
I am allergic to baclofen to.  I am on a tca which is a tricyclic antidepressant.  It also has a sideaffect for me it seems which is high blood pressure.  I went from 120/80 or lower to 166/110 or higher.  I think i can look into lyrica again i hope.
 
I will look into ldn meds and see what my new doc says about them.  Regular pain meds dont help when coupled with my other meds...heck the propxy doesnt even help me sleep.  and thats all the pain med they have for me right now.  I start my copaxone today to help with ms symptoms so yay for that. finally.
 
My lp from 07 i was just told it was normal but i was told this time the protiens separated out and was ms.  However i was also told the actual ms testing took a month or more and i have yet to find out that result...from either test...
 
the mri from 07 had a possible 2 lesions and the 08 had many.  By many i mean about 20.  ANd the 08 one of my spine done on 08-0108 had one in my spine.  so thats where i am now.  And my work suffers and they keep asking me if i will be able to do my job duties. 

thegemini
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/21/2008 12:48 PM (GMT -6)   
Wow, I am sorry to hear that you are having these issues. I got diagnosed in 10/1998 and it took them about 6-8 months to diagnose me.

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/21/2008 7:08 PM (GMT -6)   
I absolutely agree with peaceintruth that the swank diet is the way to go, he showed that you could prevent deterioation this way. My dr wants me to try to be 80% fresh food will try it in summer. I eat mostly fruit and vegs and a green smoothie (oranges, persimmon, banana, blueberries (frozen) carrot, 1/2 beetroot, handful greens). Chelation is good but unfortunately that was my first anaphalatic reaction so could not continue. Fantastic that you have had such good results from natropathy. I would so happily have gone that way but had a second anaphalaxis to a detox tea so I mostly try to achieve healing thru organic food and what supplements I can tolerate. Find fish oil excellent and taked 3000 a day (good for inflammation). Once I stopped it and had my first bad optic problems. Retook the fish oil and sight returned. I don't do any more MRI's too depressing and even my neuro says a more current would not help me. Naltrexone sounds excellent wish I had known about it.

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/21/2008 7:21 PM (GMT -6)   
Just wanted to add that if you read Taking Control Of MS by Professor George Jelinek it explains about the success of the Roy Swank diet. This is a book written by a doctor diagnosed with MS. He lives in Australia and he explained how he looked at all the alternatives and what he chose to do. Book was written a few years ago and would be easier to get hold of than Swank's book cos that is more than 30 yrs ago.

casinokid80
Regular Member


Date Joined Mar 2007
Total Posts : 46
   Posted 8/22/2008 4:41 AM (GMT -6)   
Well i definately have agree to extent about the Roy Swank diet.  I never attempted at the diet.  Its just for the fact ive been trying to eat tons of fruits and vegtables since i realized uhh, i havent in ahh 20 years.  Was eating great for a few weeks.  Then i slacked, was eating taco bell daily, thinking im getting a full course of the food groups, ( not bright).  I completly noticed i felt like crap when i wasnt getting almost 10 servings a day of fresh fruits and veggies.

peaceintruth
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/22/2008 8:56 AM (GMT -6)   
Jareth - I'm sorry that you are suffering so much. Please don't get discouraged. There are a lot of alternatives you can try, especially since you seem to have problems with some meds. Popsie is right about using the fish oils (and flaxseed or hemp oil and some borage oil, too.) The Omega-3's are anti-inflammatory and research is, more and more, showing them to be great for people with a number of different diseases. And the Swank diet isn't too difficult to follow but does severely limit your intake of saturated fats (which are highly inflammatory.) As Popsie and Casinokid said - think lots of fresh fruits and veggies.

And if you can get an Rx for LDN that would be great too. I know some drs. still won't prescribe it claiming it doesn't work or it's side effects are unknown but more and more drs. are discovering it. Even if it doesn't stop your disease progression (few meds are 100% effective) it will almost certainly reduce your pain and improve your mood.

I'm sorry you couldn't handle the chelation, Popsie. I feel so good after a chelation treatment. There are oral chelators that work well, if you can tolerate those. DMSO is the strongest, but also MSM and garlic (think Kyolic pills if you don't want to smell like an Italian festival.) I do both the IV and oral. Jareth, you can do all these things and others too, even on Copaxone. I believe in throwing everything you can at this beast and doing it ASAP. I know the diet can take a year or so to really start becoming effective but in the meantime...

Peace and Good Health

peaceintruth
New Member


Date Joined Aug 2008
Total Posts : 12
   Posted 8/22/2008 9:11 AM (GMT -6)   
Should mention two books that are my bibles for managing my health now:

"Prescription for Nutritional Healing" by Phyllic A. Balch: It's a great encyclopedia of vitamins, minerals, herbs, oils, etc. and their properties and uses.

"The MS Recovery Diet" by Ann Sawyer and Judith Bachrach: Describes the Swank and Best Bet Diets and several inspiring stories of people who have brought their MS under control with diet changes. Makes you feel like you're not totally dependent on the pharmacuetical industry to come up with a cure - since who knows when that will be.

popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 8/22/2008 5:54 PM (GMT -6)   
Agree with Peaceintruth you must not give up and try everything you can that might help. I only do what works for me and stop if it upsets me, I am sorry that I did not start sooner on all the supplements and the diet but had to find them out for myself (this was 15 years ago) and so had already deteriorated a lot when I started. Dr Jelenyck was diagnosed when he only had numbness and he has managed to stay really well - runs every day, good diet. If your diet has not been good you can see BIG benefits just with a change to lots of fruit & vegs and fish (grilled small fish deep sea or canned salmon are best, do not eat farmed fish) and chicken breast. Do not know where you live but if you can try to get 15 minutes of sun every day as lack of Vit D a real problem with MS. I am allergic to synthetic vit D but you can have it made up by compounding chemist so you can put it on you skin. Can also put magnesium cream with DMSO on painful spots helps a lot. I can tolerate drugs much better if they do not go thru the gut. Keep smiling, luv you.

Jareth
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/24/2008 7:32 PM (GMT -6)   
Thank you all for your helpful words I appreciate them all. Now if I can just work through the relationship problems that have arisen with me and my significant other (he is having a hard time dealing with this) maybe I can actually get through this. (my family is on the other side of the US and he's all I have for support right now) when it rains it pours I guess.
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