waiting for diagnosis

[ad_am]

Hi everyone
I'm new here. I've been having lots of symptoms over the past few months. Started with back pain then became joint pain and all over muscle aches. Some days I could hardly walk, it was like my brain was telling my legs to move but my legs just wouldn't move right. My arms and legs feel so heavy and weak. I've been getting lots of headaches with eye pain/sensitivity, and fatigue. I've had dizzy spells and balance issues.
My Doctor thinks it might be MS. I have had lots of blood work done, my ANA was negative and so was the rheumatoid factor, so she doesn't think its lupus or rheumatoid arthritis.  At my appointment on Wednesday she paged the radiologist to get me in for my MRI right away because shes very concerned about my symptoms and how they are getting worse. I have my MRI today and should know the results on Monday.
I want to know what it is so I can get the right treatment and hopefully get back to work. But I am scared to. I'm a health care aide and work in supportive living facility. I have had residents with MS, so I have seen what it can do. I know I can't think too far into the future, but its so hard.
I guess I'm wondering how others have dealt with the waiting process?  I'm also wondering if others with MS have worked in a physically demanding job after their diagnosis, I'm concerned that I may not be able to return to work. I know everyones experience with MS is different, but any advice and support would be greatly appreciated.
Thanks
Adam

[ad_am]

I saw my Doctor today. Spent about an hour with her. While I was there she called a neurologist and talked to him about my symptoms. He seems to think its Myasthonia Gravis. The blood work for that was done today and I am starting on a medication for it tomorrow to see if it will help. I also will be seeing the neurologist in the beginning of January.

I want to thank everyone for your comments and support.

Take care
Adam

[essdipity]

The info you've given about MS medication is incomplete and quite out of date. Regarding interferon (Avonex or Rebif) it is inaccurate, as these drugs have been long approved as MS treatments. There are also quite a few other MS drugs, both injectable and oral. I'm not familiar with the source you list, and I suggest you take a look at the National MS Society website on this matter, because it does offer accurate information.

It would be unfortunate if any readers here decided against MS treatment because of misinformation, and I hope all who may be considering some type of drug will take time to research good sources and will consult fully with their neurologists.

ess

[essdipity]

Hi. I noted that you've been having joint pain and muscle aching 'all over.' Neither of these are MS symptoms, as MS does not affect the entire body because of the nature of the disease. If joints are involved that would be very rare, and would be due to some secondary factor. So I think it's unlikely you're dealing with MS here, though of course I'm not a doctor.

I wish you the best of luck in getting to the bottom of those symptoms and getting good treatment.

ess

[supermum_ms]

Hi and welcome,

I'm thinking along the same lines as everyone else but wanted to just mention, that it maybe a good idea to see an optometrist or ophthalmologist, to get your visual issues assessed, Optic Neuritis 'could be' a possibility from what you've described but keep in mind it may not be anything related to MS at all though still worth finding out if there is or not.

Issues with light sensitivity can be related to MS visual issues, but like many other MS issues, it's also associated to a lot of other conditions (including migraine), so it's always better in my opinion, to get any visual issues checked out fully.

"Other reported visual changes in patients with ON include decreased visual acuity in bright light (about 50% of patients see better in dim light rather than in bright light), flickering scotomata, and the Uhthoff phenomenon. "  
http://emedicine.medscape.com/article/1214270-overview#aw2aab6b3

Cheers...........JJ  

[PastorDan]

I thought of migraine too, when you mentioned light sensitivity.  I'm hesitant, because migraine is not tightly defined, so I think lazy neuro's can toss us in that heap when they have no better answers.  However, light sensitivity is definitely on the migraine list, and I'be not heard of it being a well-established symptom of MS.

Still, it is possible you have more than one ailment.  Just something to remember.

Best wishes.

[ad_am]

No that one hasn't been mentioned to me. I will check into it and talk to my doctor about it tomorrow when I see her.
Thanks
Adam

[karryon55]

Has anyone discussed a neurological condition with you called Migraine Variant. I was reading what you said about your eye hurting, headache, dizziness, weakness, dropping things & light sensitivity which can all be found in Migraines.

There are lots of different types of Migraine out there with some not even having the headache involved. I know when I get a migraine I have a lot of the symptoms you have explained. Often a trial of a preventative medicine can assist to control this problem.

Just a thought.

Karry.

[ad_am]

I just got a call from my Doctor. She told me that the MRI didn't show anything. So she is saying I don't have MS, but I still have a lot of the symptoms.

I'm happy that my MRI didn't show anything bad, but I want to know what it is.

I had a really rough day on Saturday. My head hurt so much and my left eye was so sore, it felt like it was swollen and heavy. Light bothers me a lot and so does just moving my eyes. My walking and balance aren't very good and I am dropping things a lot lately.

I see my doctor in the morning, and she is going to try to talk to a neurologist while I am there.

[Guitar_grrrl]

Hi, there, and Welcome!  Like Kyle, I've had MS for over 25 years, and was diagnosed 5 1/2 years ago.  I have a physically demanding job, too, and I'm still hanging in there with it.  

I'm also a self proclaimed "fun hog", and still enjoy cycling and whitewater kayaking and rafting.

Good luck with your journey, and let us know what's happening.

[ad_am]

Thanks Alex

I'm hoping that I will be able to get back to work. Been off for a few weeks now. Luckily my work is understanding and had good disability benefits.

Right now I am having issues walking. I had to go to the grocery store after my MRI and I felt like people were staring at me because I was walking so weird. I'm hoping the walking issues will go away.

Thanks again for the reply, it helps.

[ad_am]

Thanks for the reply Kyle. It helps to hear from others and their experience.

I had the MRI and now I wait to see what my doctor says. I know my doctor has been in contact with one of the the neurologists in my city and she did say that there is a MS Clinic in Calgary. Its a couple hours away, so I'm sure if she really believes I have MS that she will refer me there but I'll just have to wait to see.

[HVAC]

Waiting is hard. Each case of MS is totally different. I have had MS for 48 years. I worked construction and Veterinary Medicine for many years with MS. I drove service vans and lifted heavy things and climbed ladders. I lifted dogs for 12 hours a day working at Vets. It was a combination of MS and Cancer that finally put me out of commission.

I still ride horses and hike and train dogs. Life with MS is a challenge but not as bad as I thought it would be.

It took me two years to be diagnosed even though they saw MS on the first MRI. I was not diagnosed until 2009.

They are coming up with new treatments for MS all the time. Even since my diagnosis in 2009 things have changed a lot.

I hope you get an answer soon.

Alex

[kwarendorf]

Hi Adam - I'm sorry to hear that you're having a tough time.

In our little group you will find many who have been diagnosed with MS and many who are where you are, in Limboland. It's not a fun place to be.

You are right when you say the MS affects everybody differently. It can be a devastating disease, robbing folks of the ability to walk or see or work. It is not always so.

I have had MS for more than 20 years, although I've only known about it for the last 2 1/2. If you were to see me you would never guess I had MS, SPMS in my case. I get up M-F and go to work just like regular folk. I have an indoor and an out door bike that I love to ride (well the outdoor one anyway :-)) My MS does not get in the way of my everyday!

For now, hard as it may be, be patient. The rodd to an MS diagnosis can be long and frustrating.  MRI are not always definitive. They are a piece of the diagnostic puzzle. Your primary care doc should refer you to an MS specialist. They are best equipped to diagnose, or rule out, MS.

Let us know what you hear on Monday!

Kyle