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czechmate
@czechmate

Posts: 14
Joined: Aug 07, 2018

MS?

Posted by @czechmate, Thu, Sep 20 4:31pm

I believe I have MS. Got extreme brain fog daily. I had mono in my 20s, had a severe sinus infection that gave me brain fog and live in Washington so my vitamin D is low.
I read these are all risk factors for MS.
My neurologist refused to treat me for MS
since MRI clean. Had brain fog 24/7 for 5 months. What can I do? Very scared.

REPLY

@czechmate — It can be scary when you have symptoms that point to something like MS and you don't know what to do. I don't have a medical background or any medical training but I'm not sure I would jump to any conclusions about having MS unless you have been diagnosed with MS. Mayo Clinic lists symptoms and causes of multiple sclerosis on the website here:

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

Here is another article that may help…

13 Conditions Commonly Mistaken for Multiple Sclerosis
https://www.everydayhealth.com/multiple-sclerosis/symptoms/conditions-commonly-mistaken-multiple-sclerosis/

John

@czechmate Well, you asked for it. I have a lot of suggestions for you. First, get ALNYLAM.com on line. Read their stuff on Amyloidosis. They have a program where they will actually send a kit to a doctor who has screwed up your diagnosis. It says something like " You screwed up Karl's diagnosis. Time for you to get it right". It includes lists of symptoms, signs tests, etc. If your neurologist doesn't like it, that's tough. You might as well not go to that person anyway. Second, do you have any doctor you really like and trust? Have them call Mayo-Rochester, or Stanford, or MD Anderson-Houston, and ask the head of the Amyloid department what to do. If you mean Washington State, I know there are no really top rare disease clinics in the state. I lived there several years. Now in Oregon. You can look at NORD.gov or NIH.Gov And talk to Dr. Ron Orlowski at MD Anderson in Houston. You might try Dr. Martha Grogan at Mayo-Rochester, but she is awful busy. Head of the Amyloid Clinic. Some of the videos from her and from others there or at ALNYLAM are worth their weight in gold. Next, download my story, "Amyloid and Old Karl" from httjps://bit.Ly/1w7j4j8 Then start writing your own story. Use mine as a pattern it you wish. The most important thing to do is to have YOUR favorite doctor call Mayo or Anderson, and ask for help. NIH also has a program for Undiagnosed Diseases which might help you. Hang in there.

Liked by gingerw, czechmate

Hello @czechmate

I can understand your concern. Yes, symptoms of MS (or like MS) can be very frightening. It sounds like you have some of them, but there is not enough evidence at this time to point to an MS diagnosis. Is my understanding correct?

Seeing a Rheumatologist to check into some of the other disorders that were mentioned in John's post above:

13 Conditions Commonly Mistaken for Multiple Sclerosis
https://www.everydayhealth.com/multiple-sclerosis/symptoms/conditions-commonly-mistaken-multiple-sclerosis/ might be a good idea. Please click on this link and read about some of these disorders. Their symptoms can mimic MS.

Often Rheumatologists are good investigators for many of the disorders mentioned in this article. Have you seen a Rheumatologist yet?

@hopeful33250

Hello @czechmate

I can understand your concern. Yes, symptoms of MS (or like MS) can be very frightening. It sounds like you have some of them, but there is not enough evidence at this time to point to an MS diagnosis. Is my understanding correct?

Seeing a Rheumatologist to check into some of the other disorders that were mentioned in John's post above:

13 Conditions Commonly Mistaken for Multiple Sclerosis
https://www.everydayhealth.com/multiple-sclerosis/symptoms/conditions-commonly-mistaken-multiple-sclerosis/ might be a good idea. Please click on this link and read about some of these disorders. Their symptoms can mimic MS.

Often Rheumatologists are good investigators for many of the disorders mentioned in this article. Have you seen a Rheumatologist yet?

Jump to this post

Yes and the infection disease specialist said all my tests were clean so no disease.

@czechmate

Yes and the infection disease specialist said all my tests were clean so no disease.

Jump to this post

@czechmate
So it does appear like you have been evaluated in lots of areas of specialty.

When I originally had MS like symptoms I was told that they might not be able to find out what was wrong until it got worse. That did not make me feel very happy but in time a diagnosis of Parkinson's did become obvious. It was a tough wait for me but it finally did work out.

If you live near a medical center that has a multidisciplinary team approach, like Mayo, or a university medical school, you could give that a try. Do you have any other thoughts?

@hopeful33250

@czechmate
So it does appear like you have been evaluated in lots of areas of specialty.

When I originally had MS like symptoms I was told that they might not be able to find out what was wrong until it got worse. That did not make me feel very happy but in time a diagnosis of Parkinson's did become obvious. It was a tough wait for me but it finally did work out.

If you live near a medical center that has a multidisciplinary team approach, like Mayo, or a university medical school, you could give that a try. Do you have any other thoughts?

Jump to this post

All the doctors I have seen are at the University of Washington. They are giving me the runaround. Did you have brain fog with Parkinsons?

@czechmate

All the doctors I have seen are at the University of Washington. They are giving me the runaround. Did you have brain fog with Parkinsons?

Jump to this post

Yes I do have occasional brain fog. When I am tired all of my symptoms get worse. I work hard at resting as much as I can during the day and not scheduling too much. The brain fog can also be symptomatic of Fibromyalgia, but I suppose that you have already been examined for that.

Parkinson's (PD) tends to result in a lot of muscle rigidity, somewhat like a bad muscle cramp only worse (feels like knots in your muscles) PD symptoms also tend to be one-sided. There can also be a clumsy-gait with PD. That was my first indication. When I would walk, especially when tired, I would drift to the right and my right foot would also drag and cause me to stumble. While most people think of tremors as the main symptom of PD I have not had very much of that (for which I'm grateful). My neurologist has told me that 15% of PD patients will not have tremors.

There are a lot of non-motor symptoms with PD including sleep disturbances, constipation, very soft voice and many more. i would encourage you to check out the National Parkinson's Foundation website for these non-motor symptoms and see how many apply to you. Also Michael J. Fox has a good website regarding PD with many blogs.

Mayo Connect also has a discussion group regarding PD. Here is the link, https://connect.mayoclinic.org/group/parkinsons-disease/#/!tab=discussions. I would encourage you to read through the different discussion topics there and see how much you might have in common with what PD patients are discussing.

While this may not be much of a comfort, it has been said that it often takes 15 to 20 years before symptoms of many neurological disorders become obvious enough to have a diagnosis. There are Mayo facilities in Minnesota, Arizona and Florida. If you want a second opinion you might consider Mayo. I certainly wish you well in your search. From my own experience I know how difficult this non-diagnosis time can be.

Have you considered another opinion?

Hi, I’ve only tried replying a couple of times, so I hope this works. When I read your post I felt like I was reading my life story. I have been diagnosed and undiagnosed with ms so many times since college and am in my 60’s. Fatigue, brain fog, pins and needles the whole bit. Not making a diagnosis, but do some research into mast cell activation syndrome. I have many autoimmune diseases that were driving me crazy trying to get a dr to listen until this June when bingo I was diagnosed with mcas. Hope this helps. Just realized posted to wrong place so @czechmate I hope you get this. John knows how technologically challenged I’m

@oldkarl

@czechmate Well, you asked for it. I have a lot of suggestions for you. First, get ALNYLAM.com on line. Read their stuff on Amyloidosis. They have a program where they will actually send a kit to a doctor who has screwed up your diagnosis. It says something like " You screwed up Karl's diagnosis. Time for you to get it right". It includes lists of symptoms, signs tests, etc. If your neurologist doesn't like it, that's tough. You might as well not go to that person anyway. Second, do you have any doctor you really like and trust? Have them call Mayo-Rochester, or Stanford, or MD Anderson-Houston, and ask the head of the Amyloid department what to do. If you mean Washington State, I know there are no really top rare disease clinics in the state. I lived there several years. Now in Oregon. You can look at NORD.gov or NIH.Gov And talk to Dr. Ron Orlowski at MD Anderson in Houston. You might try Dr. Martha Grogan at Mayo-Rochester, but she is awful busy. Head of the Amyloid Clinic. Some of the videos from her and from others there or at ALNYLAM are worth their weight in gold. Next, download my story, "Amyloid and Old Karl" from httjps://bit.Ly/1w7j4j8 Then start writing your own story. Use mine as a pattern it you wish. The most important thing to do is to have YOUR favorite doctor call Mayo or Anderson, and ask for help. NIH also has a program for Undiagnosed Diseases which might help you. Hang in there.

Jump to this post

I could not find the path to have the kit sent over to my doctor. Could you please walk me through how to get there?

@51irishlass

Hi, I’ve only tried replying a couple of times, so I hope this works. When I read your post I felt like I was reading my life story. I have been diagnosed and undiagnosed with ms so many times since college and am in my 60’s. Fatigue, brain fog, pins and needles the whole bit. Not making a diagnosis, but do some research into mast cell activation syndrome. I have many autoimmune diseases that were driving me crazy trying to get a dr to listen until this June when bingo I was diagnosed with mcas. Hope this helps. Just realized posted to wrong place so @czechmate I hope you get this. John knows how technologically challenged I’m

Jump to this post

My immunologist wants to start immunoglobulin therapy on me once I grow some antibodies. Does that work on brain fog?

@hopeful33250

Yes I do have occasional brain fog. When I am tired all of my symptoms get worse. I work hard at resting as much as I can during the day and not scheduling too much. The brain fog can also be symptomatic of Fibromyalgia, but I suppose that you have already been examined for that.

Parkinson's (PD) tends to result in a lot of muscle rigidity, somewhat like a bad muscle cramp only worse (feels like knots in your muscles) PD symptoms also tend to be one-sided. There can also be a clumsy-gait with PD. That was my first indication. When I would walk, especially when tired, I would drift to the right and my right foot would also drag and cause me to stumble. While most people think of tremors as the main symptom of PD I have not had very much of that (for which I'm grateful). My neurologist has told me that 15% of PD patients will not have tremors.

There are a lot of non-motor symptoms with PD including sleep disturbances, constipation, very soft voice and many more. i would encourage you to check out the National Parkinson's Foundation website for these non-motor symptoms and see how many apply to you. Also Michael J. Fox has a good website regarding PD with many blogs.

Mayo Connect also has a discussion group regarding PD. Here is the link, https://connect.mayoclinic.org/group/parkinsons-disease/#/!tab=discussions. I would encourage you to read through the different discussion topics there and see how much you might have in common with what PD patients are discussing.

While this may not be much of a comfort, it has been said that it often takes 15 to 20 years before symptoms of many neurological disorders become obvious enough to have a diagnosis. There are Mayo facilities in Minnesota, Arizona and Florida. If you want a second opinion you might consider Mayo. I certainly wish you well in your search. From my own experience I know how difficult this non-diagnosis time can be.

Have you considered another opinion?

Jump to this post

I have Boeing Best doctors evaluating my case now.

@czechmate

My immunologist wants to start immunoglobulin therapy on me once I grow some antibodies. Does that work on brain fog?

Jump to this post

I'm not familiar with that. What has your doctor said?

@hopeful33250

I'm not familiar with that. What has your doctor said?

Jump to this post

It is a group of the best doctors working together in my area to recommend a treatment plan and 2nd opinion diagnosis. (I hope)

@czechmate

It is a group of the best doctors working together in my area to recommend a treatment plan and 2nd opinion diagnosis. (I hope)

Jump to this post

@czechmate
Please keep in touch, I would be interested in knowing what they recommend.

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