I don't know what is going on with me

New diagnosis and before diagnosis
1

For the past 2 years I have been back and forth to the doctor with these symptoms I have and at first I was told it was Fibro and the latest is Superior Semicircular Canal Dehiscence Syndrome (which doesn’t explain all my symptoms. I finally sent a message to my GP and told her I need answers. I have an appt with her tomorrow and and MRI on the 19th.

Symptoms:

Tingling and numbness in hands/arms/feet/legs at night while sleeping, during the day while sitting, walking, standing. Sometimes I get this feeling around my arms that feels like I have a rubberband on them…so I am always adjusting my sleeves but my sleeves are not even tight. The strength in my left hand is weaker then my right…which I know is normal but this is beyond normal. I always drop things from that hand. I can’t even sleep at night due to my hands being so stiff and painful. I wake up feeling my hands are swollen but they aren’t. Just stiff. The feeling in my left hand is different then in the right. This may be TMI but I also get a numbing feeling in my private area. Also, my face. Just typing all these makes the tips of my fingers hurt.

The leg and feet cramps are horrible.

Restless leg syndrome

Heavy legs. Some days are worse than others.

My hips and legs always hurt so badly. My neck is always stiff and in pain.

My balance is bad. I have stairs at home and have to count the steps and hold on because I have almost fell a few times. I have to be very careful because I trip on my own feet and lose my balance just getting up from the sofa or moving from stove to sink.

My fatigue gets worse. I am okay when I wake up but I need a nap by 12 and I have never been a napper. Some days my body just can’t and all I want to do is sleep and lay down but I have a 10 year old.

My memory is getting worse. I have constant brain fog. From the moment I wake up to the minute I go to sleep I am constantly in another dimension. I cannot remember having conversations or the answers I have given just minutes ago. I get dates mixed up and I have a hard time even understanding someone when they speak. I have to ask what? several times. My awesome multi-tasking abilities are getting crushed. I forget how to spell words and I have always prided myself on my great spelling ability. I can’t put together sentences and my speech gets slurred.

Sometimes my left hand will shake and I will just shrug it off to something being heavy. But reaching for something I see that shake and it’s scary.

I at times can’t swallow.

Now, I know some of these symptoms are from the SSCD but when I asked my doctor about the numbing and some other things he said those are not the symptoms of SSCD. The only thing on here common for SSCD symptom is the brain fog and balance.

I don’t know. Maybe I am just crazy. I hate talking to the doctors because it is always something new. I mentioned MS to my GP and she said she cannot rule out MS or rule it in until I see her. So, tomorrow I have the appt and we will see what happens.

Can anyone tell me what symptoms you had at first??

2

Hi AmIJustCrazy What you have just done is the first step in finding out why you feel as you do. MS has many different symptoms and is different to one person than to someone else. Also MS symptoms can be the same as other illnesses, so it’s not easy to say you have it. Only a neurologist can say that. Looking up on the internet for MS is scary. They will tell you on here that dr Google is a quack don’t listen to it. I would take a list of your symptoms and any questions that you may have,. Your GP can get you a second opinion but he may at first do some tests before referring you to a neurologist. They are very busy. You have to wait a while before you are seen, the neurologist I have seen gave me the next appointment back in December and it’s for April. As for symptoms I am as yet undiagnosed, my left arm feels heavy and when I move it it feels bubbly, I have a dreadful pain in my hip, I get very light headed and my left hand fingers shake a little bit my mind is not as sharp as it used to be and the last thing is I have double vision (which is kept under control by a prism) Also I have had a MRI and seen the neurologist. The letter which came a month later said that have forth nerve palsy (my eye) and have one legion in my white matter that could be demyelinating disease. I am just waiting for my appointment in April. Try to keep a diary of all your symptoms when and how long did they last or stop, maybe you can take someone with you to see the doctor for support and help you listen what they are saying. Keep coming to this site they know how it is and able to give lots of information about their lives and MS. I hope things go well for you tomorrow. Good luck Kay

3

Hello

What Kay has said is quite right. Your GP cannot diagnose MS. Or rule MS out. Your GP may do a few neurological tests, but essentially they are a bit pointless as only a neurologist can make the diagnosis. What the GP should do is listen to you describe your symptoms (so make a brief list - you could split it into the symptoms of SSCD and symptoms that don’t fit that diagnosis) and if s/he feels there is a need for a neurological examination, refer you to a neurologist.

There is very little point in the GP considering any specific neurological diagnosis, as Kay also said, there are many symptoms of MS that could also be symptoms of other disorders. Equally, if you are referred to a neurologist, they won’t be trying to rule MS in or out, they’ll be looking at you, listening to your history, doing a neurological examination and then considering what might be causing the symptoms. At that point, they could refer you for tests, including perhaps MRI, nerve conduction, bloods, lumbar puncture, evoked potentials as well as many others.

So it’s a good thing to be seeing your GP about the symptoms that don’t fit your current diagnosis. But don’t get too hung up on MS. It’s obviously possible, but not necessarily probable.

Good luck. Let us know what happens.

Sue