Frea of having PPMS - Please help me

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Frea of having PPMS - Please help me

Postby apolo1972 » Fri Sep 22, 2006 3:31 pm

I am new to this forum and new to the whole concept of MS. I hope to get some help from people with experience with PPMS. I am truly desperate and need some guidance.

I have had many symptoms in the last 7 months that I would like to know if they can be PPMS.

Ok, so here it goes. Seven months ago I was as new. No problems, nothing. The only problem I would have sometimes is some sort of numbness on the right side of my right eye that would come and go. Not complete numbness but a feeling fo numbnes. Aslo, and this is what I related this numbness to, I have had a dry eye problem for over 2 years.
Anyway, 7 months ago I started noticing that when I put effort on any muscle of my body I would tremble. Examples: when I am lying on bed and I want to reach for the alarm clock I naturaly lean on my arm, so it trembles. After long walks, tremble. I bend to lift something, tremble (more so if I bend only half way). I close my fist strong, tremble (more then the normal person, cause I know that everyone sort of trembles when closing a fistt. Mine is much more noticable).
After I started noticing these trembles I also started noticing that when I sit and lift my shoulders (sort of trying to lift the shoulders towards the head) they go up fine but when going down they sort of go down in a "rtachet" manner. By rathcet I mean that they go down in "steps" instead of just moving down to their originall position smoothly. A bit of time pasted and I started noticing this "rtacheting" moves in my sists and ankles. If I sit and lift my ankels (toes still on the ground) then when I put them down they go down in "levels" instead of just smoothly coming down. Same for my rists.

As time went by, I started to notice another symptom. When lifting a dumbell with any of my arms several times, my arm would tremor wildly and my muscle would start hurting, more so the bisceps+trisceps. The hurting would go on for 3-4 days. Before all this started, I would do 3 sets of 20 reps each and the next day my arms would be ok. Now, I do 1 set of 20 reps and my muscles hurt 3-4 days!
The same goes for the legs. If I now do 3 sets of 20 squats I can barely walk after that and then for 3 days my leg muscles hurt like crazy.

All the above symptoms started 7 months ago. In the last 4 months I started having new symptoms additionaly to all the above.

These newer symptoms include the following:

Right hand: Stifness all the time when I try to open it fully. Sort of like the muscles are resisting me opening the hand (but only if I try to open it wide wide). Sometimes I get momentary weakness in my index finger that I notice when typing. It can last 1,2 or 3 days. Now, its not 100% weakness since I can feel it is strong. But if really feels weak when say, typing. This "weakness" can go away and not come back for 1 week. It happened various times already.

Left hand: A bit of stifness but not something that would bother me. What bothers me here is that when I open it from a first position I feel sort of "electiricty " for 1 second. Also, it started feeling sort of "numb" at times. It's not numb cause I can feel it but it's the feeling of numbness.
My thumb here will feel weak at times and then it will go away this feeling. But it can last for weeks. Again, not strong weakness, but a strange "weak" feeling.

Right leg+foot: 3 months ago it was like new. Today it hurts so much all over. I feel my thumb is weak (more then my hand "weekness" feeling). I walk 200 meters and I feel my foot is going to give away but it doesnt. No foot drop buy I feel it is getting close to that. Ankel feels weak. Numbness in the surface of the foot that comes and goes (as an example, 2 months ago I had a numbness from the half part of the surface towards the toes. It went away and then came back 1 month later. BUT, when it came back it now only affected my big toe and a bit beyond it. Now for example, there is no numbness).
The small toe trembles HARD when I move it to the side.
My whole leg hurts constantly more towards the bottom then the top. My calf hurts ALOT and it constantly feels as if it is going to cramp but it doesnt. Same goes for the big toe muscles, feels like they are wanting to cramp but they dont. All the lower part of my leg+feet feels stiff all the time.

In the moring I can walk better and easier. Later on it gets harder. Strangely, it is easier for me to go up stairs than to walk!

Left leg_foot: No foot problems at all. Sometimes I feel the muscle right below the knee is not holding it properly...sort of "loose"! I know its strange but thats how it feels:)
No pain. No feeling of stifness. Can walk on it with no problem at the moment.

Other general symptoms: Jumpy (twitching) muscles mostly in right leg although I have it all over just less severe. These twiches move from one plave to another.
Sometimes middle toes in both feet will move alonefrom side to side when I am lying down. Although this is a very new symptom and has gone away lately.

When I am falling asleep sometimes my right leg (the one that hurts) will jump once (all the leg).

I have some talking problems that come and go. Some days I can talk with no problem some other days I sort of "stumble" on certain specific words. Again, this "talking: symptom comes and goes.

Last symptom: sometimes I have like a burning sensation in part of my left leg and right arm. It does go away but coms back.


Well, that is it. I know I have a million symptoms and I am truly affraid. I went to 3 neuros already all three dont seem very professional since they did not even want to hear MS. They all say none of my symptoms are MS like. Probably because all 3 of them have no idea what the symptoms of PPMS is. One of them sent me for an EMG (all my body) which was clear. None of them founf any type of neurolagical problems when doing those office tests (leg here, arm here, touch this, touch that, raise, bend etc..!!!!:))

I truly hope someone can help me figure out if this looks like PPMS. I know it cant be SPMS since I have had no ex's.

Thank you very much for your help.
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apolo1972
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Take a deep breath.

Postby lyndacarol » Fri Sep 22, 2006 4:52 pm

Apolo1972--Everyone at this site can understand your fear; no one will diagnose you with MS of any sort (Even doctors here would never diagnose online.); I think most will agree that your description of symptoms is not normal (Some of us have had some of yours, I'm sure. It is logical to consider MS.). There is a wide spectrum of symptoms in MS; we all have a unique set.

You seem to be taking a good course of action--seeking a professional with expertise and interest in MS (keep looking!); documenting your symptoms; investigating sources of information and education on the subject (This site is a good starting point.).

Tests of many kinds will need to be done. There are many suspicions of the cause of MS; I have my own, and for that reason, I would suggest that you request a "fasting serum insulin test" (not glucose).

You will find support here; we all came through an uncertain period, too. Whether it is MS or something else, we wish you the best!
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Postby SarahLonglands » Sat Sep 23, 2006 3:04 am

Apolo, you will find a lot of help and information here, but if you click on my email button at the end of this post and write to me with the information you have given above, plus details about where you live, and so on, I will forward it to my husband, a medical doctor in the UK who treated me very successfully for rapidly progressive SPMS and now treats many other people with every type of MS with also very good results. Then he will reply to you with help, but he needs your email address, which is why I am doing it this way rather than sending you a PM.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby apolo1972 » Sat Sep 23, 2006 4:41 am

Hi Sarah,

Thank you for your help. The problem is, I have not been diagnised with MS yet. I am still in the medical process! The reason I am affraid so much is that all the symptoms I have are very similar to what I read about MS symtpoms. What is strange for me though, is that 7 months ago I was 100% healthy and now I got about 15 symptoms! I understand PPMS comes slowly and progresses, but can it come with 15 types of symptoms all at once?!!!!

Regards.
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Postby SarahLonglands » Sat Sep 23, 2006 5:01 am

Hi Apolo, yes, I realised that and sometimes a neurologist will take a long time to diagnose you because once you have a firm diagnosis you are stuck with it and it affects so many parts of your life, such as insurance matters, that it is better to live in limbo land from that point of view.

I wasn't suggesting you write to David just for treatment, but for advice. You sound very worried, which you are bound to be. He just might be able to help you with that.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby apolo1972 » Sat Sep 23, 2006 8:50 am

Hi Sarah,

Thank you again. I wrote you an email with all the details.
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Postby SarahLonglands » Sat Sep 23, 2006 10:17 am

Got it.

Will be back in touch.......Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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