Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Update on Me......and the MS thing/re updated
        
(Message started by: taraann on Jan 2^nd, 2005, 5:14pm)

Title: Update on Me......and the MS thing/re updated
Post by taraann on Jan 2^nd, 2005, 5:14pm

Gotta love doctors.......I had an MRI a lil less than 2 yrs ago...My current doc reviewed it, plus all my records. She has diagnosed me with MS. I guess my old doc overlooked it cause he wasn't looking for MS. I have had MS probably for years now. I had a contrast MRI today to double check and see how "bad" I have it I found this all out today at the hospital. I fell on my way in cause suddenly my legs felt very heavy, like I was walking through deep mud, was walking really fast cause I was running late (I am always running late) suddenly my right leg I guess just didn't go when I thought it did. I'm fine, but now that I know what is going on I'm a bit shaken about it. I was diagnosed with Fibromyaligia as a teen (without any testing) went through a bout where I couldn't really lift my arms for about 2 weeks......I bet that was part of MS.....

I guess I am in a MS flareup right now (don't know the lingo yet) I'm scared, I have been having more and more instances of having trouble walking these past couple weeks.....will I be needing a cain or wheelchair during this flare??? I have always thought my pain in my body has been a fibromyalgia thing, now I am thinking not so, I will be talking with my doc on weds and I will have a million questions. She will have my MRI results then. If this is the "same" as what I thought were fibro flareups, then I know I will only have problems for a few weeks to a few months, then have minimal to no problems for awhile.

I am on ANOTHER pred taper, but for different reasons, its supposed to help the muscle pain I guess....

I have a million things going through my mind. My sis has MS and has off and on vision problems.

I'm in a state of shock I guess.

Title: Re: Update on Me......and the MS thing
Post by Redd715 on Jan 2^nd, 2005, 5:23pm

You had an MRI on a Sunday? Wow I hope you have REAL good insurance, that had to cost a bundle.

Title: Re: Update on Me......and the MS thing
Post by LeLimey on Jan 2^nd, 2005, 5:24pm

Oh Tara, [smiley=hug.gif] what a shock to the system this must've been. I'm really sorry. How long have they got you on pred for this time? Please please please be SO careful with that stuff. I'm having an awful time coming off it at the moment and I wouldn't wish it on anyone.
Have you got to have any more tests? What back up are they giving you? Let us know how you are getting on please
Helen

edited 'cos I posted by accident halfway though!

Title: Re: Update on Me......and the MS thing
Post by taraann on Jan 2^nd, 2005, 5:24pm

just got approved for CAP insurance.............based on pay. Should be real cheap. I was really surpised they scheduled me on a sunday also.

Title: Re: Update on Me......and the MS thing
Post by taraann on Jan 2^nd, 2005, 5:26pm

on 01/02/05 at 17:24:03, LeLimey wrote:

Just 10 days again. What side affects are bothering you? I get incredibly moody. Warned Sam I started the pred today...he said "Oh gawd, thanks for the warning"

Title: Re: Update on Me......and the MS thing
Post by LeLimey on Jan 2^nd, 2005, 5:41pm

When I started on it I obviously got the football face and the acres of lard so "beloved" of pred users! You put weight on so fast you can practically watch your waist expanding... which if course is really hard to cope with as you feel you are carrying around lumps of lead. I had awful oedema, anxiety, my eyesight went awfully blurry.. couldn't see the tv from about six feet away - not well enough to distinguish who was on it. I got quite bad hallucinations too, I did know they weren't real but they LOOKED real and solid, I was seeing dead relatives and nuns and bats turning into pink squirrels... really nutty stuff!
That all settled down as I was on them for longer but now that I'm coming off them again I have all the "stressy" ones again. I'm very fearful of going out on my own (I'm just not like that usually) I panic and I don't even know why, I'm having very weird "daydream/hallucinations" I'm totally knackered because I'm dreaming really really awful things at night which then wake me up and leave me too scared to go back to sleep. I know this is all the steroids again but it's starting to really get to me and I'm so weepy, I am crying far too easily and its starting to worry me a bit.
I hope you aren't on it for very long but seriously, ask how long you will be on it and if its indefinite ask for any possible alternatives.

Title: Re: Update on Me......and the MS thing
Post by don on Jan 3^rd, 2005, 7:28am

The flip side.

I have done numerous pred. tapers and the only side effect for me is the increased appetite. You can lose weight easier than it is to lose the pain. Bring on the pred.

Title: Re: Update on Me......and the MS thing
Post by unsolved1 on Jan 3^rd, 2005, 9:32am

on 01/03/05 at 07:28:15, don wrote:

The flip side.

I have done numerous pred. tapers and the only side effect for me is the increased appetite. You can lose weight easier than it is to lose the pain. Bring on the pred.

AMEN

Tara .. sorry bout all the problems. I hope things look up for you soon. Keep us posted.

Unsolved

Title: Re: Update on Me......and the MS thing
Post by nani on Jan 3^rd, 2005, 12:33pm

Shit, tara...that really sucks. Try not to get too nervous though. Wait and see what the doc has to say on Wed. [smiley=hug.gif]

Title: Re: Update on Me......and the MS thing
Post by E-Double on Jan 3^rd, 2005, 1:16pm

Certainly rough that you have to now deal with this too...I'm sorry for that....

Now get proper treatment and be aggressive!!!!

Hugs to you and be well!

E.

Title: Re: Update on Me......and the MS thing
Post by Langa on Jan 3^rd, 2005, 2:28pm

Sorry TA that now you have to deal with this as well. As Eric said, get treatment and be aggressive about it.

Hang in there... [smiley=hug.gif]

Langa

Title: Re: Update on Me......and the MS thing
Post by taraann on Jan 7^th, 2005, 9:47pm

Ok doc is now double checking me for Lupus, she now says possible/probable MS (which from what I have read is very common, as docs aren't quick to hand out that kind of diagnosis) so it's a toss up between MS and Lupus.....do i get to choose??? ::) AutoImmune diseases both. Which means your immune system turns against your body/organs. With lupus it can affect your skin, joints, brain, heart, lungs, and kidneys, etc.

I had a positive ANA blood test which means I tested positve for an autoimmune system disease. Just can't wait for the surprise of exactly which one. This is not the first time I have had a positive ANA, had no clue what it meant until the other day though. I have to go for more testing on Monday.

Thanks for all the kind words and support all. It really makes me feel good.

Title: Re: Update on Me......and the MS thing/re updated
Post by taraann on Jan 7^th, 2005, 9:50pm

How can a doc tell you you have this one terrible disease one day then days later say....possible/probable??????

Doctors SUCK

Title: Re: Update on Me......and the MS thing/re updated
Post by ccbiggsoo7 on Jan 14^th, 2005, 2:54pm

Had a friend who just got diagnosed w/ m.s. Took 9 neurologists to figure it out. M.R.I. should determine that, it will pick up lesions on the brain, if indeed it is M.S. Good luck cause it is a very hard disease to diagonose. Prayers w/ you.

Title: Re: Update on Me......and the MS thing/re updated
Post by Margi on Jan 14^th, 2005, 3:08pm

Taraann, MS is such a devastating disease - I really hope you don't have it.

I have a very good friend who has recently moved across country here in Canada (from Central Canada to the west coast). She, too, was diagnosed with MS and when she would have "flare ups", she would have to depend on a cane/wheelchair. She lived in a rural area so getting around wasn't always easy for her. She also had vision problems, like you mention.

Once she relocated, her MS symptoms started to improve and she is walking completely unaided now with no signs of MS whatsoever. Her doctor told her she is not only NOT in remission, she doesn't even have a positive MS diagnosis anymore!

It turns out that the water in the area where they used to live had an alarmingly high iron content. (Her daughters had also started to show signs of MS by the time they were leaving Ontario.) They're fine now too. Her doctor firmly believes (and has researched this) that her symptoms were directly related to an iron toxicity in her system from the water. Apparently, this directly mimics MS symptoms. As well, she is addicted to diet coke. Aspartame toxicity also mimics MS.

Please ask your doc to test you for these things? It sure might be worth looking into because the "cure" is real easy for both iron and aspartame toxicity.

Prayers with you.

Title: Re: Update on Me......and the MS thing/re updated
Post by floridian on Jan 14^th, 2005, 4:15pm

Check out a low fat diet with fish/flax oil. Also vitamin D. Maybe bromelain or phlogenzym (enzymes that reduce T-cell activity, from pineapple and other sources). Naturally, research this more and talk it over with your doctor first. Too much D can have side effects.

Quote:

Exp Biol Med (Maywood). 2004 Dec;229(11):1136-42.

Mounting evidence for vitamin D as an environmental factor affecting autoimmune disease prevalence.

Cantorna MT, Mahon BD. Department of Nutritional Sciences, Pennsylvania State University, University Park, PA 16802, USA. mxc69@psu.edu

Low vitamin D status has been implicated in the etiology of autoimmune diseases such as multiple sclerosis, rheumatoid arthritis, insulin-dependent diabetes mellitus, and inflammatory bowel disease. The optimal level of vitamin D intake required to support optimal immune function is not known but is likely to be at least that required for healthy bones. Experimentally, vitamin D deficiency results in the increased incidence of autoimmune disease. Mechanistically, the data point to a role for vitamin D in the development of self-tolerance. The vitamin D hormone (1,25-dihydroxy vitamin D(3)) regulates T helper cell (Th1) and dendritic cell function while inducing regulatory T-cell function. The net result is a decrease in the Th1-driven autoimmune response and decreased severity of symptoms. This review discusses the accumulating evidence pointing to a link between vitamin D and autoimmunity. Increased vitamin D intakes might decrease the incidence and severity of autoimmune diseases and the rate of bone fracture.

Quote:

J Am Coll Nutr. 2002 Dec;21(6):495-505.

Omega-3 fatty acids in inflammation and autoimmune diseases.

Simopoulos AP. The Center for Genetics, Nutrition and Health, Washington, DC 20009, USA. cgnh@bellatlantic.net

Among the fatty acids, it is the omega-3 polyunsaturated fatty acids (PUFA) which possess the most potent immunomodulatory activities, and among the omega-3 PUFA, those from fish oil-eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA)--are more biologically potent than alpha-linolenic acid (ALA). Some of the effects of omega-3 PUFA are brought about by modulation of the amount and types of eicosanoids made, and other effects are elicited by eicosanoid-independent mechanisms, including actions upon intracellular signaling pathways, transcription factor activity and gene expression. Animal experiments and clinical intervention studies indicate that omega-3 fatty acids have anti-inflammatory properties and, therefore, might be useful in the management of inflammatory and autoimmune diseases. Coronary heart disease, major depression, aging and cancer are characterized by an increased level of interleukin 1 (IL-1), a proinflammatory cytokine. Similarly, arthritis, Crohn's disease, ulcerative colitis and lupus erythematosis are autoimmune diseases characterized by a high level of IL-1 and the proinflammatory leukotriene LTB(4) produced by omega-6 fatty acids. There have been a number of clinical trials assessing the benefits of dietary supplementation with fish oils in several inflammatory and autoimmune diseases in humans, including rheumatoid arthritis, Crohn's disease, ulcerative colitis, psoriasis, lupus erythematosus, multiple sclerosis and migraine headaches. Many of the placebo-controlled trials of fish oil in chronic inflammatory diseases reveal significant benefit, including decreased disease activity and a lowered use of anti-inflammatory drugs.

continued ...

Title: Re: Update on Me......and the MS thing/re updated
Post by floridian on Jan 14^th, 2005, 4:15pm

Quote:

Eur J Clin Nutr. 2004 Aug;58(8):1095-109.

Multiple sclerosis and vitamin D: an update.

VanAmerongen BM, Dijkstra CD, Lips P, Polman CH. Department of Molecular Cell Biology and Immunology, VU Medical Center, Amsterdam, The Netherlands. b.m.van.amerongen@inter.nl.net

MS is a chronic, immune-mediated inflammatory and neurodegenerative disease of the central nervous system (CNS), with an etiology that is not yet fully understood. The prevalence of MS is highest where environmental supplies of vitamin D are lowest. It is well recognized that the active hormonal form of vitamin D, 1,25-dihydroxyvitamin D (1,25-(OH)(2)D), is a natural immunoregulator with anti-inflammatory action. The mechanism by which vitamin D nutrition is thought to influence MS involves paracrine or autocrine metabolism of 25OHD by cells expressing the enzyme 1 alpha-OHase in peripheral tissues involved in immune and neural function. Administration of the active metabolite 1,25-(OH)(2)D in mice and rats with experimental allergic encephalomyelitis (EAE, an animal model of MS) not only prevented, but also reduced disease activity. 1,25-(OH)(2)D alters dendritic cell and T-cell function and regulates macrophages in EAE. Interestingly, 1,25-(OH)(2)D is thought to be operating on CNS constituent cells as well. Vitamin D deficiency is caused by insufficient sunlight exposure or low dietary vitamin D(3) intake. Subtle defects in vitamin D metabolism, including genetic polymorphisms related to vitamin D, might possibly be involved as well. Optimal 25OHD serum concentrations, throughout the year, may be beneficial for patients with MS, both to obtain immune-mediated suppression of disease activity, and also to decrease disease-related complications, including increased bone resorption, fractures, and muscle weakness.

Quote:

Lik Sprava. 2003 Apr-Jun;(3-4):109-13.

[Effect of phlogenzym in long-term treatment of patients with multiple sclerosis]

Mialovyts'ka OA.

An assessment was carried out of clinical effectiveness of the drug phlogenzym in 74 patients with remitting, remitting-progressive, and secondary progressive course of multiple sclerosis. Phlogenzym intake for up to one to three years resulted in decline in the incidence of complications, with their degree having come to be lower, duration of remissions longer, progression of the illness slowed down. The data secured suggest to us that phlogenzym is a safe agent. It can, we believe used in a therapeutic regimen for those patients presenting with remitting and remitting-progressive types of the course of the disease.

Title: Re: Update on Me......and the MS thing/re updated
Post by Sean_C on Jan 21^st, 2005, 5:17am

I love the Flo-dude. He's always there with helpful info for everybody.

Hope things get better not worse T, keep the faith.

Sean.......................

Title: Re: Update on Me......and the MS thing/re updated
Post by taraann on Jan 22^nd, 2005, 3:13pm

That is wonderful Margi, that she is getting better! Thanks for the info Floridian, very interesting.
And thanks again Sean and EVERYONE for the well wishes. I just got more bloodwork yesterday to recheck my ANA among other things. I have an appt. on Monday, hopefully I will have some real answers then (do I really want answers, or "blissful" ignorance???)

Title: Re: Update on Me......and the MS thing/re updated
Post by maggs on Jan 23^rd, 2005, 6:00pm

I am sorry to hear about your MS.

I am new to the board and live in Washington DC. I have both Cluters and MS. In fact I am going through a horrible episode with the Clusters right now.

I was hit in 2001 pretty bad with MS. Could not use the right side of my body for about 8 days. But it has cleared up and only feel it sometimes.

The CH are much worse! In fact I was on Predisone in the beginning for this bout of CH. But the doctor only gave me 30mg a day for 5 days and it did not work. The side effects are not that bad for me. The longest I have been on them were for 2 weeks.

For MS you may have to get an IV those seem worse.

Hang in there and let me know if there is anything I can do!

Title: Re: Update on Me......and the MS thing/re updated
Post by taraann on Jan 24^th, 2005, 11:56pm

Well had my appt today. My most recent MRI was clear! The doc did MORE bloodwork today. We really reviewed my history (all kinds of what I thought were "little" things of no significance) from now to years and years ago to about when I was 15. About the time I was diagnosed with migraines and Fibromyalgia.

She is really thinking Lupus now (known as the "great imitator of MS" ) She prescribed me an anti inflamattory as it seems I have bursitis in my hip. We talked alot about lupus and about how a lot of my symptoms over the years fit right into it, then add the positive ANA test and well we'll see I guess.

I really just want to get a diagnosis of what the heck the issue is or isn't so I can just get on with it. Deal with it and know what the heck has been going on with my body!

Welcome maggs!
Quote:

Hang in there and let me know if there is anything I can do!

Thanks and the same goes for you!

Title: Re: Update on Me......and the MS thing/re updated
Post by ClusterChuck on Jan 25^th, 2005, 2:06am

Tara, darling, it may not be the bestest of news, but at least it looks like you are finally getting some answers! It is a lot easier dealing with something once you know exactly what you have, even Cluster Headaches!

You know you got my prayers and vibes heading out to you. You can handle this!!!

Chuck

Title: Re: Update on Me......and the MS thing/re updated
Post by OneEyeBlind on Jan 25^th, 2005, 7:47am

Tara, I'll be keeping you in my prayers. Hopefully the docs can figure out what is really wrong so they can start treating you appropriately.

Title: Re: Update on Me......and the MS thing/re updated
Post by nani on Jan 25^th, 2005, 8:41am

Hang in there tara...Chucks right, at least you'll have some answers. This waiting must be really hard on you. love and hugggssss, nani [smiley=hug.gif]

Title: Re: Update on Me......and the MS thing/re updated
Post by TomM on Jan 25^th, 2005, 10:04am

on 01/07/05 at 21:50:57, taraann wrote:

How can a doc tell you you have this one terrible disease one day then days later say....possible/probable??????

That was my question. Maybe a second opinion is in order?
No matter what....good luck.
TomM