Unexplained neurological symptoms - all tests are clear !

[Depresso]

Hi everyone .

I am a 24 years old girl , who used to be fit and healthy until October last year. All of a sudden I started to have extreme headaches that didn't go away with regular painkillers (Panadol, Alvadon). I saw my GP who gave me some muscle relaxing medicine, but that didn't help either. At the end of november I started developing neurological symptoms like pins and needles everywhere, numbness in hands feet - right side of body and general pain in the body. The numbness is particular more in right side of face including the nose. I really got scared of all these symptoms and I cried alot in that particular period when it all started. That of course left me depressed and I started developing anxiety - I couldn't sleep for several nights, the only thing I did was crying.

My GP sent me for a CT scan which came back completely normal. Then my GP referred me to a neurologist and she did some neurological examination of my body which was normal - only a slightly weakness in the right said but, she said that could be caused by hundred of things. She then ordered a MRI of my brain and spinal cord along with a Lumbar puncture - both tests came back clear. Now, I am having these symptoms in five months and the doctors can't figure out what is wrong with me. I have also tried physiotherapy and chiropractors without any remarkable relief. I can not concentrate on anything because of these symptoms and I cry alot because of my situation. I don't go to university anymore due to this illness. I simply don't know what to do. My GP said that it might be MS, and he gave me some anxiety medicine for 14 days. If that doesn't help he will start treating me for MS! Should I just accept this diagnosis even the tests are clear? Even though my neurologist thinks that these symptoms are not specific only for MS? My neurologist said that because my tests are clear she don't find any need to treat me for something specific like MS. I went back to my GP who is stubborn on starting the treatment for MS! I don't know what to do!!
I forgot to mention that I also got checked for B12 and Lyme disease and both tests were normal. The only thing that came up in the blood tests was low D-vitamin which I am taking now.

So now im in this limboland where I can't figure out what to do? My health is falling apart day by day, and I don't have any motivation to live anymore. I feel so sad, scared and depressed. What is happening to me? Is there anyone out there who might have a good advice? Should I start the treatment for MS?

- Faiza

[NHE]

Should I just accept this diagnosis even the tests are clear?

Welcome to ThisIsMS. In my opinion, no do not accept the diagnosis. An MS diagnosis is a process of elimination. There are many conditions which can mimic MS symptoms. If your current GP is stuck and out of ideas, then it may be time for a new doctor. The treatments for MS have significant side effects up to and including death. You do not want to start these medications unless there is certainty about the diagnosis and it sounds like you're a long way from that.

At the end of november I started developing neurological symptoms like pins and needles everywhere, numbness in hands feet - right side of body and general pain in the body. The numbness is particular more in right side of face including the nose.

The symptoms you describe could be consistent peripheral neuropathy. You may want to read one of LyndaCarol's posts for some ideas on other things to check.

http://www.thisisms.com/forum/general-d ... ml#p233178

I forgot to mention that I also got checked for B12 and Lyme disease and both tests were normal.

Do you know your B12 numbers? Here in the US, the range used for B12 is quite broad, usually from 200-950 pg/mL. It's possible to be in the lower end of the range and still be deficient and be labeled as "normal." A good range to aim for is 500-1000 pg/mL. Did you get any other tests done in addition to serum B12? It's usually a good idea to test homocysteine, red blood cell (RBC) folate and methylmalonic acid (MMA). Both homocysteine and MMA will be high if B12 is low. High MMA is thought to be more specific to low B12 as homocysteine can also be high if either folate or vitamin B6 is low. However, chronically low folate can drive B12 down since it's used to remethylate B12 back to its active form.

You may want to read this the following thread for more details and references. http://www.thisisms.com/forum/natural-a ... 24857.html

The only thing that came up in the blood tests was low D-vitamin which I am taking now.

What were your vitamin D3 test results? D3 utilization requires good magnesium levels. There has been much discussion of D3 and magnesium on the various boards on the forum. It may be helpful to read some of those posts.

[Depresso]

Thanks for your reply

I am currently doing some research about those things you mentioned. Here in Sweden, we don't really have direct access to our medical journals, and if you want to it'll take a lot of time and effort, and still they'll give you limited answers! Last time I spoke with my doctor about my D-Vitamin levels it was on 20 - So now I am taking a daily pill which is 500 mg/800 IE. He has given me some anxiety pills and if that doesn't make me feel better he is thinking of starting the MS medicine, I don't feel like I have any word to say, since he argues that I am not feeling better so this indicates that I have a neurological disease - probably MS. My neurologist analyzed the MRI pictures and the Lumbar Punture test and she didn't find any abnormalities, but on the other side she don't know whats causing my symptoms so she send me back to my own doctor - So I feel like a ball which is constantly being thrown over - here and there . They can't put me in another box than MS so it's there they're going to place me

[NHE]

My neurologist analyzed the MRI pictures and the Lumbar Punture test and she didn't find any abnormalities, but on the other side she don't know whats causing my symptoms so she send me back to my own doctor

It seems like your neurologist should know more about diagnosing MS than your GP. You might have MS and you might not. There are guidelines for diagnosing MS. Your GP's "best guess" isn't one of them. The guidelines are called the McDonald Criteria. You can read them on the following page from the National MS Society. http://www.nationalmssociety.org/For-Pr ... g-Criteria If you don't fit into these guidelines, then the diagnosis should not be made. Once you get put into the MS box, it's exceedingly difficult to get out in that any problem you have gets attributed to MS. It's better by far to be patient and actually figure out what's going on with you. If your GP will not alter their position, then it's likely time for a new doctor.

[Youarethecure]

so, what NHE said times 1 million.

Your primary doctor is out of his or her mind if what you are saying is true. You cannot just best guess someone into a diagnosis of MS. As stated above, there are proper guidelines.

Find a proper neurologist, one that specializes in MS, and leave any diagnosing to them. A "normal" general doctor is not the one who should be considering to diagnose someone with MS.

I truly hope the best for you,

Chris

[Depresso]

Thanks both for your replies .

I am changing my doctor now. I called him today and he just laughed and said no matter where you go they'll also diagnose you with MS! Here in Sweden we have to wait for almost 14 days to get your doctor changed. Is there any further investigation that I can do on my own to help my situation? Right now my headache is much better, but I still feel the numbness in my forehead, nose and sole of right foot. These symptoms are not directly distracting me, but just the thought of that they'r still there makes me sick

I feel like my family and the medical system has given up upon me - I feel alone in this battle . If I talk with my family about it they all think its in my head, and if I turn to my doctor he is just waiting to diagnose me with MS! I just want to be normal again! I can't even remember the feeling of being "normal". This condition has destroyed both the outside and inside of me I don't know am I ever going to be normal again: Sometimes I think maybe I get better if I just take the MS medicine , just to get a diagnosis and some relief of all this pain!!

[lyndacarol]

Faiza (Depresso), you can retrieve the private message I sent to you by clicking on "new messages" in the upper left-hand corner of this page.

[radhakrishna]

My daughter is having sharp headache, numbness in rightside of the body, vision problems.
MRI is clean. B12 tests okay. Therefore, I am interested in knowing what happened later in your case. How are these health issues were resolved?

[jimmylegs]

hi, it's been 3 yrs almost to the day since OP posted here at TiMS so you may not get a reply, let alone a speedy one!

what's day to day like for your daughter? diet quality? activity levels? stress levels? any other kinds of health challenges? have there been any referrals to dietitian?

personally, when i look back at my own history the warning signs were there even as an adolescent. would have been wise to take action then.

do you have specific results for serum b12 on file? any other nutrient test results available?