The long wait for a diagnosis

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The long wait for a diagnosis

Postby Amanda81 » Mon Nov 12, 2012 7:30 pm

Hello, My name is Amanda and this is my first time posting here. I have not been diagnosed with MS, however I am seeing a neurologist and I have had MRI's of my brain and spine done last week. My follow-up with the neurologist isn't until December 20th and the stress of not knowing seems to be making my symptoms worse.

I have already been diagnosed with stage 1 endometriosis 7 years ago and I was diagnosed with migraines when I was 11 years old. Last January I started limping for no apparent reason, I was feeling pain in my right hip and it felt like my right leg would just give out on me. Then after a couple weeks of limping I slipped on ice and injured my back. Since then my back has been a constant issue and then other symptoms started to creep up. I would feel "bee stings" and a burning tingling sensation at different parts of my body, I am always so tired and in pain somewhere in my body and if I overheat in a bath or shower I feel very ill. Lately I've been getting spasms, cramping, and shaky muscles. I am a 30 year old divorced single mother of 2 ages 6 and 3 and the complete degradation of my health and ability to do things with my children really started to get to me and I finally went to my family doctor. My family doctor said it was stress and put me on an anti-depressant called cipralex. I was on that for a few months when my doctor finally sent me to see a neurologist who right away changed me from the cipralex to Elavil(amitriptyline) and ordered the MRI's.

I hate being in limbo not knowing what is going on but my gut is telling me it is MS even though I hope it is not. Is there any advice anyone can give me from when they were going through the long wait for answers. I am scared and stressing about this and it's making my symptoms worse but I don't know how to not stress over something so scary.
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Re: The long wait for a diagnosis

Postby NHE » Tue Nov 13, 2012 2:45 am

Welcome to ThisIsMS. I hope that you find this to be a supportive community. While you're working with your doctors trying to figure out what's going on, it might be a good time to take some positive steps with regards to diet & nutrition and exercise. In general, I would recommend eliminating trans fats and minimizing saturated fats while eating lots of foods that are rich in micronutrients such as those that are higher up on this list. Some supplements to consider, which are likely good for everyone including people with MS, are omega-3 fish oil, green tea, curcumin from turmeric, vitamin D3, zinc and magnesium. A well rounded multivitamin with a good B complex is also a good idea. For exercise, you don't have to go to extremes, a good place to start is to just go for a 2 or 3 mile walk every day if possible.

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Re: The long wait for a diagnosis

Postby LR1234 » Tue Nov 13, 2012 6:24 am

Hi Amanda,
I hope you get some answers soon.
I also have endo but stage 3 at least (bowel involved) and was told I had occular migraines and CFS (M.E) before finally getting the MS diagnosis.
Took 14 years to get diagnosed, hopefully either way you will get an answer soon and if it is MS we are all here to chat and support you xx
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Re: The long wait for a diagnosis

Postby Cece » Sat Nov 17, 2012 11:48 pm

I remember the terrible stress of being diagnosed. I found it's something that can be accepted eventually even if not right away. At least it helped make sense of what my limitations were and at least there were drugs like provigil that made the fatigue easier to manage. Later came CCSVI venoplasty and that helped tremendously. If I had to give advice about the waiting for the diagnosis, it would be that the diagnosis is just words to describe what you're going through, and whether it's described or not, you're already living your symptoms. The fear is if they won't go away and if things will get worse. The diagnosis won't tell you the prognosis because MS is highly variable from one person to the next. If it ends up being MS, the terrible wait gets drawn out because the disease is unpredictable and you don't know what you'll wake up to. So you end up having to live in the moment as much as possible, and each day being a fresh start and a fresh battle.
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stress info Re: The long wait for a diagnosis

Postby jimmylegs » Sun Nov 18, 2012 7:38 am

welcome to TiMS amanda :)

i second NHE's recommendation to take steps re diet/nutrition, while you wait for various specialists to provide more info.

linking you up to some science based on your list of probs (starting with stress):

nutrition effects of stress (men's stuff came up first but there are similar mixed/female studies with a bit more digging)

Biochemical indices of selected trace minerals in men: effect of stress
http://ajcn.nutrition.org/content/53/1/126.short
"...C-reactive protein was detected in only five subjects BHW and in all subjects AHW. Zinc, iron, selenium, and albumin decreased by 33%, 44%, 12%, and 9%, respectively, whereas ferritin, ceruloplasmin, and creatine kinase concentrations increased AHW by 59%, 8%, and 266%, respectively."
(fyi, BHW and AHW are for before and after 'hell week') :roll:

Serum Copper, Zinc and Selenium Levels with Regard to Psychological Stress in Men
http://www.sciencedirect.com/science/ar ... 2X99800212
Significantly lower S-Zn (p<0.02) and S-Se (p<10-5) were found in the former prisoners compared to the reference subjects, whereas no significant difference between the groups was found for S-Cu (p>0.80). ... lowered S-Zn and S-Se levels may be ascribed to increased psychological stress induced by conditions during imprisonment.

Anxiety and stress among science students. Study of calcium and magnesium alterations
http://www.jle.com/e-docs/00/04/1D/1B/v ... ionPDF.pdf
Stress is related to well established biomarkers such as cortisol [1-4] and aldosterone. ... nxiety is associated with an increase in catecholamines [9-11] which is responsible for an increase in magnesium urinary excretion and a decrease in its plasmatic concentrations [12-16]. ... Several studies have demonstrated that the daily activity of scholars causes significative stress [18-21] and this could be related to a great number of psychosomatic disorders [22, 23]. Chronic stress was found to reduce the endothelial function, which may also be associated with an intracellular magnesium level decrease in humans [24].

so, might be wise to look at your serum zinc, magnesium, selenium, and ferritin. ferritin issues are so common in women. zinc, magnesium and selenium are known to be issues for ms patients of both genders.
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Re: The long wait for a diagnosis

Postby jimmylegs » Sun Nov 18, 2012 7:44 am

linking you up to a thread by a woman who arrived here with some mild but troubling neurological symptoms which she attempted to manage via nutrition .. spoiler alert: happy ending :)

check it out:

general-discussion-f1/topic19575.html#p189060
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