Does anyone else out there have Primary Progressive MS?

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Does anyone else out there have Primary Progressive MS?

Postby MichelleS702 » Wed Sep 09, 2009 5:57 am

I am newly diagnosed and have primary Progressive MS. I lost most my eyesight about 6 months ago and since I have developed other symptoms with no resite from all the previous. The most annoying is an itching and pain along my right arm. Both hands are numb and the walking into walls is really a killer Lol! I have several other symptoms as well (vomiting, nosebleeds, headaches, off balance) amd I was hoping there was someone else out there with this so they could give me advice on how to handle some of the symptoms. I understand that not many people have progressive, but if you do... please help :(
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Postby scorpion » Wed Sep 09, 2009 8:27 am

There are many people on this site with PPMS. I am sure you will get some great suggestions from the members on this board!
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Postby LR1234 » Wed Sep 09, 2009 8:39 am

Hi Michelle,
welcome to TIMS (sorry you had to come here though)
There are a few people on here who do have the progressive form of the disease not sure if they are primary though (I think most of them are secondary)
Have you tried taking LDN and modifying your diet to the Best Bet diet?
I have heard that some of the PPMS patients have found relief from combining these two treatments?
I am not so sure about handling symptoms as when I had a bad relapse (I am RRMS) I didn't cope well at all. Maybe others can offer some advice for this.
Again welcome to TIMS I hope you find lots of helpful info

L
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Postby MichelleS702 » Wed Sep 09, 2009 3:25 pm

Thank you for the warm welcome! Yes I have been following the diet and taking the vitamins recommended along with the Neurotin and B12. I cannot seem to get any relief from the symptoms though although the Neurotin helps alot with the bladder issues =(
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Postby indigoinmotion » Wed Sep 09, 2009 4:29 pm

look into low dose naltrexone if you haven't already! : ) indigo
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PPMS

Postby chickadee50 » Sun Sep 13, 2009 6:40 pm

I am new to this site and also newly diagnosed in April 09. Neruologist as of last week states he is thinking ppms My question is how have other doctors determined MS type? My doc says MS type is more clinical.
Looking for all info I can get. I turned 50 in January 09 and 09 has proved to be a roller coaster
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Welcome Chichadee!

Postby MichelleS702 » Sun Sep 13, 2009 7:33 pm

Its hard to diagnose the type from what I am told. My symptoms are constant with no reprive although I have new ones surface all the time. I am awaiting the scan of my spine to confirm the primary Progressove diagnoses, however that was the clinical diagnoses.

I know what you mean about the roller coaster! One day I woke up and couldnt see out of my right eye and had alot of pain in the socket. By the next week I had blurry double vision in both eyes. Then the other symptoms came pouring in. I still thought it was just a vision problem making me dizzy and sick and that was the cause of the unbalance. After 2 eye docs they sent me to the regular doctor and a neurologist whom then diagnosed me. I never knew about MS. Its amazing how many people dont know the disease, or the sympyoms. Bu the time I was told it was MS I had almost every symptom and never realized. Were you as shocked with the diagnoses as I was?
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RE

Postby MichelleS702 » Sun Sep 13, 2009 7:35 pm

Please forgive the typing...I used to be a legal secretary and now my hands just dont want to work =(
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