Frustrated and Scared

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Frustrated and Scared

Postby rovngypsy » Mon Oct 29, 2012 3:30 pm

I will try to keep this short as possible. I am a 58 yr old female and I have lupus. Diagnosed in 2000. Nothing has helped my lupus other than prednisone. Since 2008, I started to have symptoms that did not go along with my past lupus symptoms and flare ups. Things such as overheathing almost all the time, even when doing nothing)( painful feet, to the point of not being able to find any shoe that does not hurt, though Crocs are the best so far. Rheumatologist says I have plantar fasciitis and heel spurs. Foot specialist says same but adds nerve damage as does orthopaedic. This is only beginning.

After episodes of overheating, muscle cramps, spasms, leg and arm weakness, and some problems with walking, I was referred to a neuromuscular doctor. Then more strange things happened before I got in to see her. Even though I have had problems with incontinence, I now have problems with bowel movements also. I go sometimes without warning and it is very embarassing and degrading. There has been times I didn't even know I did it until I smelled it, (so sorry). Saw a gastroenterologist to make sure nothing was wrong with digestive area as I do have GERD and have had ulcers. Everything okay in that area.

The neuro ran some tests and based on EMG, brain MRI, and Lumbar Puncture, I was told my diagnosis was "Inconclusive MS" and she referred me to the MS Clinic at Duke. I live in NC and am an hour away from Duke. I cancelled my appt, because I thought she had done everything that could be done and what else could be done to help me. Well, that was in February of this year and things have gotten considerably worse.

The burning in the soles of my feet can be like walking on fire coals or it can be like heat from a fire and though it is mostly the whole sole of feet, it sometimes can be an area on the bottom of feet. And then there is the thing that feels like I have a thick piece of leather stuck to my feet and it drives me crazy because nothing is there. Also, like a piece of tape sometimes stuck to feet.

Legs hurt and muclses are weak. Can't stretch leg muscles like bending over; legs will get weak. Sometims it feels like I may be walking on a cloud or I can see I am walking, but I don't feel like I am in control. Sometimes feel like a wet cloth is laying somewhere on my leg, usually below the knee, just above the ankles. Usually when legs are affected, my arms are too, such as when I am hot. My legs and arms are very weak. Sometimes arms to weak to wash my hair.

In the last year, have been to eye doctor because I will have "eyeball" pain. He says the optic nerve in rh eye is enlarged. Asked me if I had MS and of course, said no. Now my vision has changed drastically. Can't see well with my glasses at all, blurred vision at times and a week ago, had an episode of "flashing" in my eyes. It was like a camera flash going off and it lasted for about 30 minutes. Finally just closed my eyes, couldn't handle it. This past week, I have swelling in my left eye and pain around the socket and again feels like my eyeball hurts.

Now for the latest, I hurt from just under my boobs and up, but it is weird. It is a strange pain, and it is front and back, around my body. It is under my shoulder blades around my ribs, even to touch my boobs hurts. Feels almost like the skin is to tight. Like when you have a really bad cold or the flu and your body has places that you can't touch and older people used to say "they had cold in their body". But, it does hurt. Can't stand to lay on my back, can't stand to wear my bra, but it's not like muscle pain or soreness. Just really weird. For years, I had a sharp pain that would shoot up & down my back like a lightening bolt and make me jump out of a chair (if I was sitting). Now that area is numb (the whole rh side of my back from shoulder blade down to waist.) That same thing has started on my left side too. I get the numbing and have had that for a long time off and on. My hands sometims will stay numb til lunch time or longer or fingers are just numb at any time. I get the feeling of something on my arm like a hair or something crawling and I look and nothing there.

Definitely have some cognitive function problems, which could be lupus related. Used to work in accounting and now I transpose numbers like I am dsylexic (sp). Can't think of what things are called. Lose myself in mid sentence and my memory is really really bad. Spelling is horrible as you can probably tell and I used to be a great speller and my greatest love is writing.

My appt with MS Clinic was Oct 25th, but had to cancel because everything has flared up again and I couldn't make that ride, even for an hour. Rescheduled for Dec 13th. If there is anything you can tell me that may shed some light on this or if there is something specific I should be aware of for when I go to the clinic or questions to ask. I just need help right now trying to get some relief and figuring all this out.

Thanks so much and I apologize for it being so long.

My family doctor says I definitely need to go to MS Clinic. Says my symptoms are classic MS. Saw him a month ago because of ankle and leg swelling and I had the bad shakes. He says there is mention of MS in my records from other doctors that dates back 4 yrs, which would be 2008, but no one ever said anything to me. My rheumatologist says none of this is related to lupus and doesn't know it is and just tells me, "it's not his area or expertise".
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Re: Frustrated and Scared

Postby bartman » Mon Oct 29, 2012 4:35 pm

what you might have is called bartonella. you probably have lyme and babesia as well. these are super stealth infections that need multiple antibiotcs. you need to educate yourself about this controversy and the inaccuracy of testing. read Dr. Burrascano's Lyme disease guidelines and you will see sore soles listed for bartonella. google it and then find a LLMD. mainstream medicine will give you the run around and prednisone is not good for infections. my cousin was misdiagnosed with MS for 13 years until we discovered. these infections are also misdiagnosed as Lupus.
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Re: Frustrated and Scared

Postby lyndacarol » Mon Oct 29, 2012 6:19 pm

Welcome to ThisIsMS, rovngypsy. I offer you my standard action plan suggestion:

First, you may not have MS at all; as you probably know, it is a differential diagnosis – made by ruling out other possibilities. Very often, it is not easy or quick to diagnose. Before today's tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if those symptoms temporarily worsened when the patient sat in a hot bath for a while. IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not necessarily agree in our thoughts on MS; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas. Bartman has given you his thoughts; here are some of mine:

Second, since your family doctor strongly recommends the MS clinic and since you have seen many specialists already, this may be a good course of action; but I usually think a GP or internist with whom you are comfortable, who is compassionate and who enjoys being a "disease detective" is appropriate at first. You and your doctor are in the best position to make this decision. I tend to believe that if you see a surgeon, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I just read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize." A GP can order the tests necessary to rule out some possibilities. As you have probably done with lupus: start at the beginning with a thorough physical, baseline examination including blood tests for your cortisol level (elevated with stress), glucose AND insulin levels (these are two DIFFERENT tests, as you know) – I think the "fasting blood insulin test" is THE most important to request –, thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, and CRP (C-reactive protein) test (indicating inflammation). Ask for a copy of all your test results for your own file. Personally, I suspect insulin involvement and insulin resistance in skeletal muscles as a major part in MS; this could play into your muscle weakness and spasms (Insulin thickens and stiffens smooth muscles – smooth muscles surround the bladder and intestines and are involved with urinary and bowel incontinence.). Mild cognitive impairment is common to MS and other conditions – there is a connection to excess insulin in MCI as well. By the way, having the diagnosis of lupus, you probably already know that people diagnosed with one "autoimmune disease" are often diagnosed with a second, or even a third.

Third, if you like to read and if you do have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD, and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, and most importantly, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), removing all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), removing all trans fats (These also increase insulin.), and removing white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. My suspicion is that Fatty Liver Disease is also involved, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Frustrated and Scared

Postby rovngypsy » Mon Oct 29, 2012 6:43 pm

Bartman,
It is with interest you mentioned Lyme and I have not looked up Bartonella or Babesia as of yet. In Sept of 2005 I did get bit by a tick and yes, tested positive for lyme and was treated for over a year with two different antibiotics. Also developed cellulitis as well. Also, developed cellulitis again in Sept of this year after getting a solu medrol injection and was on Keflex and Clindomyicin for 28 days. I would think if I had any type of infection, it would surely be gone by now. I will check on the other things you suggested and thanks for your reply.
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Re: Frustrated and Scared

Postby rovngypsy » Mon Oct 29, 2012 7:27 pm

Lynacarol,
Thank you for your reply and many times I have heard diet & nutrition play a huge part in many diseases and I am very aware of that as well. I read a book in the seventies called "You Are What You Eat" by Adele Davis and I have always believed in that. It's odd that at the time I started having lupus symptoms, I was a vegan and hated sweets. I was at a very healthy weight, worked out almost daily and had a great life with my family and my career. Everything seemed perfect, except this one nagging crash that would hit me about every 3 - 4 months and would last for weeks to sometimes a couple of months. It became impossible for me to be in the sun because the sun made me very sick. Because of that, I'm not so sure nutrition is the correct answer for everything. Nevertheless, I do believe in eating healthy as possible.

I have had the same doctors for 11 years. Every 3 months, my rheumatologist runs a liver panel, lupus panel, CRP, and kidney function and in September did a CBC also. He keeps a check on my Vitamin D levels because I cannot be in the sun and I take vitamin D. The only thing out of the ordinary was an elevated white cell count, which he said could have been from prednisone (?), therefore we are on top of those things. My internist just ran the Thyroid panels and metabolic panel. Everything okay. I do see my internist again tomorrow and he will be able to see the swollen lymph nodes and at this time I am running a fever as well. My joints are not as painful as usual with a lupus flare up, however I do have the malar rash on my face, but have all these other things going on at the same time. And I will go to the MS clinic in December.

My question to you would be, how has your MS responded to the diet and nutrition you are talking about? Do you have to take any meds?

Thanks
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Re: Frustrated and Scared

Postby bartman » Mon Oct 29, 2012 7:59 pm

the steroids are making you worse. there is no cure for Lyme contrary to what some may say, especially in the later stages. Most people that get lyme also have coinfections that are also contracted thru the same tic. IMO, it's the coinfections (bartonella & Babesia) that keep you sick. You could have been misdiagnosed with Lupus years ago. The steroids have made you worse as they do for so many people with ms. Initially they help and then it wears away and you are worse.

Now, since you have done the steroids it will be impossible to test positive on a very unreliable test anyway because your immune system is unable to make antibodies.

ask your doctor about plaquenil (which is used for lupus also) and biaxin or minocycline (which is used for ms) funny how these relatively safe and cheap antibiotics are used for these autoimmune diseases but the doctors never tell you. Then you have to take them and suffer through the herxheimer reactions. It takes a long time to get well and you may need to try different combo's of antibiotics. You need to find a really good Lyme dr.

Stop the steroids immediately, you are helping spread the infection all over your body. These infections are spreading like wildfire! I hope this help, you really need to do your own research and figure it out, mainstream medicine does not give a darn about these infections as they would put the autoimmune business out of work!
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