Does this sound like PPMS? Or even MS at all?

[J-er]

Hi all. Need a little help and advice here. I have been having some weird symptoms for the last three months. First off, been lightheaded when I get up too fast, or move around too quick. Secondly my hands have been tingly off and on, and it seems like they wake me up every night because at one time or another one or both go to sleep. Also seems like I have some floaters in my eyes and my right knee is tight. Tryi to do some online research, and it seems like I might have PPMS. Went to my regular doctor and he chalked it up to my anxiety, and put me on Xanax. He is going to do a carpal tunnel test though. He did send me to a neurologist who ordered some bloodwork, and also a brain and brainstem MRI. Everything came back normal, and he said everyone looks fine. He wants to see me in another 3 months to see if anything gets worse and also do some nerve tests. He said at that time if anything looks worse we can do another MRI of the spine if needed, but so far he is not suspecting MS. Sound like MS? Please help!

[JerryD]

It sounds like you could have something that mimics MS. Did your doctor do a blood test for low vitamin D? I hope that you get your anxiety under control. Anxiety could be causing some of your symptoms. Good luck

[J-er]

It sounds like you could have something that mimics MS. Did your doctor do a blood test for low vitamin D? I hope that you get your anxiety under control. Anxiety could be causing some of your symptoms. Good luck

Thanks Jerry. Do you have PPMS? What were your symptoms upon dx?

[Pipes123]

Hi J-er,

It's definitely no fun to have symptoms the doctors haven't yet identified. I hope you don't have ms. If you do, odds are you have RRMS.

This is about PPMS from the Cleveland Clinic.
http://my.clevelandclinic.org/neurol...sclerosis.aspx

How is primary progressive multiple sclerosis diagnosed?

...
The story of a gradually progressive neurological problem--such as weakness on one side, unsteadiness, or numbness in the legs--is characteristic. The condition must have been present for one or more years to make this diagnosis. The examination should show changes suggesting central nervous system disease. The MRI should show lesions that are characteristic of multiple sclerosis. The spinal fluid often, but not always, shows oligoclonal banding. This is a sign that the immune system is active around the brain and spinal cord. The evoked potentials may show slowing in nerve conduction in the central nervous system. There should be no other diagnosis to cause the symptoms.

What other diseases can mimic primary progressive multiple sclerosis?
There are other diseases that can look like PPMS and need to be considered. For example, some people inherit a tendency for stiffness and weakness in the legs; a family history may be helpful. Some people with low vitamin B12 levels may develop numbness and stiffness in the legs and will show changes in their MRI scans. Occasionally, Lyme disease may look like MS. Some people with viral infections such as HTLV-1 may have a spinal cord syndrome. Sometimes discs or spinal arthritis may compress the spinal cord, or a tumor may be pushing on the spinal cord. Other diagnoses should be considered when the diagnosis of PPMS is being made.

[JerryD]

Before I was diagnosed with PPMS in 2009, I had numb and tingly hands most mornings. Then, I noticed that my right leg went limp when I got fatigued. I had carpal tunnel surgery on my left hand and little changed with my symptoms when the hand healed. I began having eyesight problems that my optometrist couldn't figure out. He sent me to a retinal specialist and the retina guy diagnosed me with macular degeneration.
So after about 50 visits to different doctors, I finally saw a neurologist and was diagnosed with PPMS. It was a long year or two.

[J-er]

H again Jerry!

Thanks for the reply. Did the Macular Degeneration have to do with MS? Or just happened?

Also, you say you were dx in 2009. How are you today? I have heard with PPMS, that it starts with your legs first? And usually your eyes and brain are not affected that much.

[JerryD]

J-er,
I was diagnosed in 2009 with PPMS. I have noticed that my condition has been deteriorating since that diagnosis. From my experience with this disease, there is nothing good about having MS, especially PPMS. There are no treatments. The neurologists are even less familiar with this form than RRMS.
I feel that I am on my own to figure out how to treat my disease. If you are dx'd with PPMS, I wish you luck! You know that you are in trouble when the doctors and drug companies have very little to offer as treatments, except off-label drugs that are designed to treat another form of MS. Best wishes to you.

[Dale76]

Hi all. Need a little help and advice here. I have been having some weird symptoms for the last three months. First off, been lightheaded when I get up too fast, or move around too quick. Secondly my hands have been tingly off and on, and it seems like they wake me up every night because at one time or another one or both go to sleep. Also seems like I have some floaters in my eyes and my right knee is tight. Tryi to do some online research, and it seems like I might have PPMS. Went to my regular doctor and he chalked it up to my anxiety, and put me on Xanax. He is going to do a carpal tunnel test though. He did send me to a neurologist who ordered some bloodwork, and also a brain and brainstem MRI. Everything came back normal, and he said everyone looks fine. He wants to see me in another 3 months to see if anything gets worse and also do some nerve tests. He said at that time if anything looks worse we can do another MRI of the spine if needed, but so far he is not suspecting MS. Sound like MS? Please help!

To me this does not sound like PPMS ( I have PPMS), everyone is different so it is of course possible but I would say unlikely.

For me my first and worst symptom has been lower back pain. I also had pain and numbness below my waist early on. I estimate I have had it for at least 16 years, I still work part time but I'm in extreme agony day and night and I have enought symptoms I could fill a page here listing them.

I have had minor issues with my eyes. (Shimmers) I have lots of cognitive issues at this point.

Anyways be very glad that you likely do not have PPMS because it is beyond an torture you can imagine.

I would continue seeing doctors till you get to the bottom of your issues in any case, you do have some symptoms that are cause for concern. You did not mention fatigue as a symptom and that is something that nearly everyone with any form of MS experiances so to me that points towards you not having MS (which is a good thing trust me!)

[J-er]

Thanks for getting back to me Dale. Are you still somewhat mobile? You say you are still working. That's great. What line of work are you in? I don't go back to the doctors til October, so I will let you know what they say.

[Dale76]

Thanks for getting back to me Dale. Are you still somewhat mobile? You say you are still working. That's great. What line of work are you in? I don't go back to the doctors til October, so I will let you know what they say.

I am still fully mobile, I walk without any aids but even very short walks rob me of energy and cause me a great deal of pain. I use mmj to control my pain and I credit it for still being able to walk as I was shopping for a mobilty scooter before I started with it.

I work casually as a mechanic right now, working with a friend, short hrs and light duty work. Till recently I worked in an auto restoration shop 3 days a wk but it got too much and I had to give it up.

[J-er]

I am still fully mobile, I walk without any aids but even very short walks rob me of energy and cause me a great deal of pain. I use mmj to control my pain and I credit it for still being able to walk as I was shopping for a mobilty scooter before I started with it.

I work casually as a mechanic right now, working with a friend, short hrs and light duty work. Till recently I worked in an auto restoration shop 3 days a wk but it got too much and I had to give it up.

That's great Dale! How long have you had PPMS?

[Dale76]

That's great Dale! How long have you had PPMS?

Dx around 1.5 years but I believe I have had it for around 16 years.