Newbie here & at the end of my rope!!!

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Newbie here & at the end of my rope!!!

Postby moongoddess » Tue Nov 06, 2007 4:10 pm

Hi everyone! I have been struggling for over a year with all kinds of weird symptoms, and finally saw the neuro today. He says I "might" have ms, but more tests are needed. Enough with the tests already!!! My MRI shows 25 lesions located in the periventricular white matter in the subcortical region, and all blood work is normal. My symptoms are as follows: severe ear pain with face numbness, weak right arm, chronically tired, unable to sleep, left leg sometimes numb and feels very heavy, multiple visual disturbances, severe pain in hands and feet, toes are constantly numb, fingertips sometimes numb, feel like I have ants crawling underneath my skin, unable to effectively work 40 hours per week as I used to, and the list goes on and on. I have seen every kind of specialist known to man for various problems, and of course, all tests were normal and they all said nothing was wrong with me. I am not really wanting to have a spinal tap, since it cannot tell me one way or the other if I have ms or not. Plus, I have no insurance and have already gone through our savings just to be told that nothing is wrong with me. I know I am venting, so thanks for listening and any and all advice will be greatly appreciated. The neuro sent me for more blood tests, and says I should wait 6 months and get another MRI. How am I supposed to go on living in constant pain, chronically fatigued for another 6 months? Already I am unable to drive at night due to the vision issues, what might happen next?
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Postby jimmylegs » Tue Nov 06, 2007 4:43 pm

hi moon - that sounds super frustrating! i'm personally into looking at what goes wrong with nerves and the immune system and other various processes in MS, what everything needs to work right, and why cells, processes etc might not be getting what they need, and what "normal" test results might actually indicate when you compare your results to other sick people and other healthy people, and then figuring out what you can change while you wait for the docs to come up with a plan of action!

there are lots of other options here for pharmaceutical treatments too and you can be reading up so you know what treatment suits you personally when/if the day comes that they decide MS.

if you end up having to go with the spinal tap, if they only tell you to lie down for 1/2 an hour, to 3 hours, anything in there, don't believe them! allyB i think it was, said where she's from they tell ya to lie down way longer, and she had no probs. i only got told 1/2 hr, and had side effects which stayed with me til i confined myself to three days solid on the couch!

anyway there's lots of great dietary info on here that you can act on right away, and you can pm me if you want to talk about any specific nutrients that i might have looked at so far :)

hope they get organized for ya soon!!!!!
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Postby Grumpster » Tue Nov 06, 2007 6:11 pm

Hello,

With your laundry list of symptoms, an abnormal MRI and positive results from a spinal tap they should be able to clearly diagnose. The spinal tap really is a confirmation at this point it sounds like. I went through the same and it was not until the spinal that they said guess what - you were right -you have MS. It is not what anyone wants to hear, but it did get me to the point where some treatment could start.

I am sorry that you find yourself in this situation. I have most of the symptoms that you describe, but yours sound more intense right now.
Some supplements and Rx meds could likely help significantly. I would start right away on B complex, B12, Vit D, fish oil and a good multivit. There are many others to consider, but these seem to really help MS'rs.


I would go through with the spinal, but for sure stay horizontal for the rest of the day if you have it done.

Good luck with it all.
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Welcome, moongoddess

Postby lyndacarol » Tue Nov 06, 2007 8:09 pm

As I wrote to AHuxley: "As I have done, I recommend you start a file with copies of every test result you get. Next, start a personal MS library (I suggest you start with Multiple Sclerosis: The History of a Disease by T. Jock Murray, OC, MD.).

Read and ask questions everywhere--here at this site, at the doctor's--EVERYWHERE."

Many of us have never had a spinal tap (me) but definitely have MS. Your symptoms sound adequate for a clinical diagnosis; after all, in The History a bath in hot water used to do the trick. Perhaps you need a different doctor you can really talk to, someone who is willing to listen and work with you.

Diet is a good place to begin--it has helped many people. (See The Gold Coast Cure by Andrew Larson, MD and wife Ivy Larson; also many use the Swank diet with positive results) At least, diet is an area where YOU have control.

You are among people who understand you here.
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Postby REDHAIRANDTEMPER » Wed Nov 07, 2007 7:24 am

welcome to the group and i know excatly how you feel about the not knowing i was told 2 and 1/2 yrs ago i might have ms...still testing i know the frustration you are feeling..i did the spinal tap and did okay with it....no sideaffects and stuff like that...but i know its hard...this group is great and there is nothing wrong in venting matter a fact this is the best place to do it..they are all understanding and listen well..or should i say read well...lol.....good luck

chris
waiting for answers
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Postby AllyB » Wed Nov 07, 2007 12:13 pm

Hi there

Love your nom de plume! Sorry you find yourself here, but it is a great place to vent.
I was diagnosed very quickly, so didn't go through all that you are, and please forgive me because I am no expert, but 25 lesions? What the hell else do they think it might be, given your symptoms? Are they all currently enhancing? If not, then that would indicate that some are "old" the non-enhancing ones) and some are new or current (the enhancing ones). I don't know what planet your docs are on - did they give you any other reasons for the swiss cheese look to your brain, or are they trying to say it is fine/normal, and you are imagining all those aweful symtoms? There are tests they do during a proper neuro exam that will also indicate the diagnosis, or at least that there is a problem...
With that you fulfil the criteria for diagnosis, as far as I can recall - you need clinical evidence (signs & symptoms), and evidence of disease activity over time, and hopefully in different places from MRI - the spinal tap just confirms it (and again to my knowledge, I could be wrong, but your csf will only be positive for raised igg and oligoclonal bands if you currently have active inflammation, as these substances are there as a result of the inflamatory process).
My radiology report actually stated that my lesions (some enhancing, some not - and I think I only had 3 or 4 in the brain, and 3 in the c-spine) were as a result of de-mylenating (bad speller) disease. My neuro initially hoped for ADEM, did the spinal tap - those results took a while to come back and I had another relapse just as he got the results, which were positive, so he had no doubt! My c-spine lesions were/are still the worst in terms of clinical symptoms...
If your doc insists on a spinal tap, it is not so bad, and is worth it to get a diagnosis that all med professionals will accept going into the future. JL is correct though, lie down for at least 8 hours immediately after the tap, and drink a stack of water - the headaches (which can be crippling) are not just as a result of leakage, though this is a factor, but also because they remove spinal fluid and it takes some time for the body to replace this - if you think about it, this stuff cushions your brain, there isn't that much of it to start with so if they take out 10 - 20 mls, it will lower the pressure in there, and lying completely flat (no pillow) helps keep the remaining fluid near the brain until your body makes some more...

Hope all goes well and you get some help soon.
Al
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Postby cheerleader » Wed Nov 07, 2007 2:50 pm

Dearest Moongoddess...

My heart goes out to you. My husband was diagnosed last March, after the lumbar puncture. Most docs will not use MRI alone for diagnosis. He also had numerous lesions and had gone numb on one side. We're using diet, supplements and Copaxone. The combo seems to be working. We take one day at a time.

Get the lumbar puncture and get a definate diagnosis. That way you will qualify for patient assistance programs for any of the CRAB drugs your neuro prescribes. The meds are expensive, but you might be able to get some help.

Here's some info from Montel Williams site-
Avonex, Betaseron, Copaxone, and Rebif all offer patient assistance programs to help people who are underinsured or do not have insurance. To find out about these services or to determine eligibility, please call the number listed below.
All of the programs require a prescription before they will provide
reimbursement services.

The contact info for the Avonex Alliance is 1-800-456-2255, the program is called the "Avonex Access Program" for Copaxone the number is 1-800-887-8100, the program is called "Reimbursement Services Group" for Rebif the number is 1-877-447-3243.

For Betaseron the number is 1-800-948-5777. Or log on to www.betaseronfoundation.org for an online application.

You've come to the right place for help...keep the faith, and keep looking for healing.

All the best,
AC
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Re: Newbie here & at the end of my rope!!!

Postby NHE » Thu Nov 08, 2007 12:13 am

Hi Moongoddess,
If you do decide to get a spinal tap, then it might be a good idea to read this thread first and make sure that the doctor doing the tap is aware of the issue raised by jimmyleggs concerning the needle bevel orientation.
Anesthesiology. 1989 May;70(5):729-31.

Needle bevel direction and headache after inadvertent dural puncture.Norris MC, Leighton BL, DeSimone CA.
Department of Anesthesiology, Thomas Jefferson University, Philadelphia, Pennsylvania.

To study the effect of needle bevel direction on the incidence and severity of headache following inadvertent dural puncture occurring during the identification of the epidural space, the authors randomly assigned obstetric anesthesia residents to identify epidural space with the bevel of the epidural needle oriented either parallel or perpendicular to the longitudinal dural fibers. If dural puncture occurred, an observer unaware of the needle bevel direction, daily assessed the presence and severity of any subsequent headache. Of the 1,558 women who received epidural analgesia during this study, 41 women suffered dural puncture, 20 with the needle bevel oriented perpendicular to the longitudinal dural fibers and 21 with the needle bevel inserted parallel to the dural fibers (NS). Fourteen of 20 women in the group in which the needle bevel was perpendicular to dural fibers developed a moderate to severe headache, whereas only five of 21 in the group in which the needle bevel was parallel to dural fibers did so (P less than 0.005). Similarly, we administered a therapeutic blood patch to ten of 20 women in the perpendicular group but to only four of 21 in the parallel group (P less than 0.05). Thus, identifying the epidural space with the needle bevel oriented parallel to the longitudinal dural fibers limits the size of the subsequent dural tear and, therefore, lowers the incidence of headache should dural perforation occur.

NHE
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Postby jimmylegs » Thu Nov 08, 2007 5:51 am

thanks for raising the bevel subject NHE, i forgot!
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Postby missvicki » Fri Nov 09, 2007 12:12 pm

A spinal tap is pretty definitive. Do you suppose the reason the dr. hesitates to give you the diagnosis is because you don't have insurance?

If you decide to have a spinal tap, go home and lay on your back for a good 24 hours so you don't get the "headache". Other than that, the procedure was not too bad.

Good luck!
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Postby Nick » Tue Nov 13, 2007 1:01 pm

Hey Lunar Girl

I often post a note such as this to folks who are either newly diagnosed with MS or are probable with or suspicious of the condition.

An insidious aspect of MS can be that it is not formerly diagnosed until the neurological damage becomes so pronounced there is no other reasonable explanation. I speculate that this scenario of waiting for more symptoms to arise to induce a diagnosis has characterized many of us with MS. Unfortunately this is not in a patient’s best interest yet it is a fact of the insurance driven medical world we live in.

Obviously it is crucial to halt or slow any further neurological progression as much as possible before serious nerve damage occurs. Aside from or in addition to drug therapy, there are choices to address your MS that are inexpensive, safe and easily incorporated. Moreover the MS medical community is ever so slowly recognizing that MS can easily be prevented with safe, simple and low cost measures.

As controversial as the last statement seams, vitamin D has been recognized to positively regulate the immune system from attacking self and that levels of vitamin D intake, that were not long ago thought to be toxic, are now seen as harmless. The key remaining relationship to be recognized is at what intake of vitamin D results in optimal protection from MS. Dietary proteins have also been demonstrated as having the ability to confuse the immune system into attacking self by molecular mimicry.

Should you have MS, you are in the relatively early stages of your disease process (at least as far as symptoms go and at this juncture, it appears as if your symptoms are a consequence of nerve inflammation rather than damage to the nerve itself). This is positive as halting the disease process can yield a full recovery when inflammation decreases as opposed to the state of nerve damage which will persist irrespective of stopping the disease mechanisms. The same elements that induce prevention of MS will also have an effect on active disease progression.

Roger MacDougall is one such individual who induced remission and then enjoyed the benefit of his body repairing itself, from what was most likely nerve inflammation, to full recovery despite his one time wheelchair status.

Because of the success I have attained in controlling my MS I have become a participant in the efforts of DIRECT-MS (Diet REsearch into the Cause and Treatment of Multiple Sclerosis). Since our inception in 1997,one of our goals was to sponsor a clinical trial which will put to test the theory of causal dietary proteins, essential fatty acid deficiency and a deficiency in protective vitamin D3. As the research category at our site details, we have recently initiated a clinical trial in Scotland that is applying diet revision for intervention of early stage MS.

As a quick self analysis, if you regularly consume one of more of gluten, dairy, legumes, eggs or yeast and do not get 4,000 IU/day of vitamin D3 or its equivalent (this intake equates to a minimum of an internal concentration of 100 nmol/L), then you will find the information at our site of great relevance.

The body of evidence and my own experience dictates that prevention, of not only tissue damage, but also the entrenchment of autoimmunity against self, is the best manner to deal with an autoimmune disease. Even though you have might have active MS, the absence of serious nerve damage bodes well for an effective response to this regimen. Perhaps only such simple measures as getting enough vitamin D3 and omega 3 fatty acids with minimal saturated fat intake will be enough do it for you.

Good fortunes

Cheers
Nick


DIRECT-MS material

Booklets

Direct-MS produces information booklets on various aspects of multiple sclerosis. These booklets are listed below and a PDF of each one can be opened and downloaded by clicking on the title. Alternatively we can mail you a hard copy of any or all of the booklets. Just writeor email(info@DIRECT-MS.org ) us and let us know which ones you would like sent to you. Don’t forget to include your mailing address. There is no charge for this service.

Booklet #1 Take Control of Multiple Sclerosis
This booklet discusses the main causal factors of MS and, with this information as a guide, it lays out our recommendations for nutritional strategies to help control MS.

Booklet #2 Protect Your Family from Multiple Sclerosis
This booklet emphasizes the high risk for contracting MS of first-degree relatives of persons with MS. It discusses the causal factors of MS with special emphasis on vitamin D deficiency as a primary cause. Finally it demonstrates that adequate vitamin D can likely prevent MS in most cases and provides a recommended supplementation regime.

Booklet # 3Multiple Sclerosis: The Alberta Disadvantage
This booklet demonstrates that the province of Alberta, the home of DIRECT-MS, has by far the highest rates of MS in the world: Prevalence 340/1000,000; Incidence 20/100,000.
Data and arguments are provided to support the argument that the main reason for the “MS Epidemic” is that all the main causal factors are present in Alberta, with low vitamin D supply being especially problematic.

Presentations

We have found that a Voiced PowerPoint presentation (‘Webcast’) is an effective way to communicate the science and the recommendations for nutritional strategies for controlling MS and preventing it in the first place.

Our latest presentation is Potential Therapeutic Characteristics of Pre-agricultural Diets in the Prevention and Treatment of Multiple Sclerosis. The presentation is narrated by Dr Loren Cordain of the Colorado State University. Dr Cordain is a world renowned expert on health and the original human diet and is the author of the “Paleo Diet” and “The Paleo Diet for Athletes”. He explains how returning to a diet based on lean meats, seafood, fruits and vegetables can prevent and help treat MS and other diseases such as Rheumatoid Arthritis and Crohn’s Disease.

Our third webcast is Prospects for Vitamin D Nutrition. The discussion is narrated by Reinhold Vieth of the departments of Pathology and Laboratory Medicine, Mount Sinai Hospital and Laboratory Medicine and Pathobiology, University of Toronto.
Dr. Vieth addresses the topics of:
Vitamin D and Human Evolution
Clinical relevance of higher vitamin D intakes
Toxicology of Vitamin D

Our second webcast is entitled Preventing Multiple Sclerosis and is the second in a series of web casts regarding nutrition and Multiple Sclerosis. The focus of the Prevention presentation is how MS can be easily, safely and inexpensively prevented by focusing on protective factors. This is a must see for those people with MS who have children.

Our first webcast, Nutritional Strategies for Controlling Multiple Sclerosis, addresses diet and MS. It presents the probable causes of MS and how to effectively control those elements. A review of the protective factors and how to incorporate them into your lifestyle
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Thanks from the newbie!

Postby moongoddess » Thu Nov 15, 2007 11:57 am

Thanks to all of you who responded with advice and encouragement. I will continue to visit here with all of you wonderful people!
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