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Process of Multiple Sclerosis Diagnosis
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An_249333 posted:
I am in the beginning stages of investigation for MS, an MRI, neuro-psych testing and a referral to an MS specialist are being scheduled. I am quite worried. My father died from MS at age 46. I have had a long term depression which has been quite treatment resistant and the doctor has indicated has a strong biological factor. I was diagnosed with Mineres Disease last year after frequent vertigo, balance problems and pain in my ears with no sign of infection. Recently I have been under more strain and a variety of symptoms have begun to appear and have been steadily worsening. I have stiff legs, shaking and difficulty walking down stairs. I have hand tremors for over a year that is not medication related. I have urinary frequency (as in all day long and at night interfering with sleep). I have bowel difficulties. I tire easily, react badly to extremes in heat or cold. I live in a cold climate and recently was outside for less than 2 hours in weather just above the freezing point. I was very well dressed and others were fine with the weather. When I got home I was shaking which continued for several days under a heating blanket and I could not stay awake. Similar incidents have continued to occur. My memory has become affected and when I am talking I will often lose track of not only what I am saying, but all thoughts. At these points all I can think is that I know I do not remember and that I can feel people waiting and expecting a response. Sometimes I need to ask for prompting to remember the topic of conversation. When speaking I will often know exactly what I plan on saying and the words will not come out corrrectly or will be slurred. I am an excellent speller and suddenly even with spell check can not tell what is wrong with sometimes simple words. The most recent symptom is a feeling of cold in my limbs. It feels like it is cold and flowing even though I am in a room at normal temperature. It feels so cold that it feels like burning sensation. Many people around me seem to not want to even address this posibility, but it is affecting my life and I need some advice.
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hackwriter responded:
Dear An_,

The symptoms you describe do sound neurological and it's good that you are being tested for MS. You should undergo both brain and spine MRIs, a lumbar puncture, physical exam to test balance, strength, coordination and reflexes, and evoked potentials.

Having an immediate family member with MS only puts your chances of developing it at 1-3%. Though there is a genetic component, environment plays a major role in making the disease active.

Waiting for a diagnosis is the most stressful part of this. You are obviously feeling quite alone and apart, and people's reactions to your symptoms and concerns aren't helping. I was there once, and I do understand what you're going through. And having a history of depression certainly doesn't help the coping. Having a chronic illness often brings depression along for the ride. Many of us take medications for depression along with our symptom meds.

It might take some time to get to the bottom of what ails you. An MS diagnosis involves ruling out many other conditions that can mimic the disease. Once you can put a name to it and start treatment, things will get better.

In the meantime, rest when you need to, keep a symptom log to bring along to your appointments, and ask your doctor about symptom meds that might make you feel more comfortable. Muscle relaxers such as baclofen and anti-seizure meds such as gabapentin and Lyrica can go a long way in managing spasms, spasticity, and neuropathic pain. Anti-cholinergics such as Vesicare can improve a spastic bladder. And do feel free to come here with questions and concerns, we'll do our best to help you feel less alone in this.

Kim
 
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Jane1978 replied to hackwriter's response:
Hi, Kim thank for the support, I think my family is scared so they are pulling away. My dad's version was long and completely dehabilitating.I am more willng to accept the possibilty because it has been at the back of mind for a long time, but now the symptoms can't be put aside any longer; I will talk to my doctor about additional medication fo the other symptoms. I am on several drugs for depression, sleeping pills, and Serc for Menieres which has no effect.I will soon see an optometrist and have a new hearing test. I worry because I have a very good job with excellent benefits (no cost for drugs and private hospital rooms) and even though I am Canadian and I never worry about paying a bill for a doctor I understand that these medications can be very expensive. This week is when my doctor, employer and my group insurer decide whether I will lose this job due to the length of my illness. If I stay I keep a job I need, but negatively affects my health.Big changes over an undiagnosed illness
 
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Rory26312 replied to Jane1978's response:
Hi Jane

The reaction of your family is not uncommon and the best way to change it is through education.

If a diagnosis is confirmed and you start on a disease modifying therapy (DMT) you will need to explain how the work as well as how the effect the course of the disease.

As to your employment situation, I do not know how it works in Canada but here we have the Americans with disabilities act(ADA) which would make having that conversation illegal. You should check if Canada has a similar law.

As for the Menieres disease my brother has it and it was uncontrolled until eighteen months ago when he started taking valium and (touch wood ) he has not had an event since. Of course you may be on it allready for depression but if not it may be worth a little research before your next doctors visit.

You sure have a lot going on but remember that you have to be your own best advocate as doctors often say well it's not this so, go home and try some other specialist. In which case you have to start all over again so do not let them give up until you have an answer and treatment plan that you believe is right for you.

Above all do not let anyone tell you It's all in your head or think you are doctor shopping ,this is another common reaction among if the cann't explain your symptoms.

Sorry this is so long but I hope it helps

Rory

P.S. could you break up your posts a bit as I have devoloped a promblem reading large blocks of type.
 
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jenniferlee0112 responded:
I'm so sorry you're experiencing so many troubling symptoms. Knowing that your father died of MS might be making other friends and family members afraid to talk about it. I'm sure nobody wants that for you, and it's frightening for everyone. I'm glad you're taking the first steps toward diagnosis. It can take a while because an MS diagnosis comes after eliminating other diseases, such as Meniere's disease. Even though there are biological components to MS, don't think that you will die young because your father did (if you do indeed have MS). There are many options for care, many of which are as simple as taking the right supplements and adjusting your diet. Starting a low-key exercise plan can be a great help, as can avoiding stress. I wish the best for you in your journey.


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