Anybody have MS like my Ms

[Shoo]

I was diagnosed 28 yrs ago symptoms at least five or six before with bladder and left leg no feelings, doctors telling me their was nothing wrong with me.

1988 vertigo which put me in the hospital and the diagnose of ms. I was happy the doctors finally found out what was wrong with me even though I had no clue what ms was.

1995 optic neuritis

Ever since 1995 all my symptoms are the legs, bladder and bowels no problems with the top part of my body,

I have been on a lot of medications, they either didn't work or I had an allergic reaction The best medication was the IVig it worked for at least 2 yrs. That was the last time I was on meds and that was over 10 yrs ago the drs told me they had nothing to help me I also had plenty of pt, aquatic exercises and massage.

Shortly after diagnose I became Sp. I had a lot of good yrs even though I had problems with the left leg and leaky bladder.

I am now home bound either in my bed or recliner, hubby helps me.

In the last few yrs I met a lot health care people and they told me they never seen anybody with ms like mine. Last yr I had an occupational therapist who couldn't believe I had so much upper body strength, he told me somebody should do a study on me ad my ms

It is so frustrating cause my upper body wants to go but the lower body can't go anywhere. I always say if you cut me in half and give me a new lower half you wouldn't even know I had ms

So anybody out there like me?

Thank you if any body read this or responded

Shoo

[palmtree]

The answer is yes. That's great your upper body is still so strong! This pattern seems very common. We get ON which leads to a dx, then it gravitates to the lower part. Some are lucky and their MS continues to be flares of ON. But those of us who have bladder problems before usually have more trouble using our legs.

My experience has been that I started with bladder problems and had to self cath. Then got an MRI that showed demyelination. Then ON which confirmed the dx.

But after that it has just been a gradual deterioration of my ability to use my lower extremities along with extreme fatigue. My upper body , that was extremely stong before has now atrophied. I have tremors, too.

It you still have full use of your upper body, you have and advantage.

[Sharebeaer]

Hi
It's interesting you were told that. Many with MS have a very strong upper body and its the lower body which is effected. I myself am one of them. My upper strength is great but my lower limbs have a mind of their own.
Do you have access to a modified car with hand controls? or perhaps a bus system for those in wheel chairs? If so try to get out if you can. Freedom makes us feel so independent. A local library, community center, gym may offer accessible programs for fitness, crafts, etc...
If you have a local chapter of the MS Society in your city they would have information on such activities they may host.
You are not alone in this....
Stay strong...
Share

[REG53]

I have practically the same sx's as you. Thank God my hands and arms are still working.

[Shoo]

Thank you to who replied to my post.

Sharebearer I would love to get out of the house but impossible now. My left leg spasms are bad and I have a hard time sitting in my wheelchair. Thank you for your suggestions


Shoo

[Tia1]

Hi Shoo, what does your doctor say about your spasms? I get pretty bad spasms as well and I am taking Baclofen, keppra and flexeril for them. Also magnesium each day.

I hope that you get some relief from the pain.

[Tawanda]

I am happy you got some good responses. As much as we are alike in our disease, we are different. MS is lonely in that way. Personally I feel like crap every day but for different reasons.

Hoping you get the support you need.

[Shoo]

Tia1 and Tawanda thank you for answering my post,

I take 80 to 100 mgs of Baclofen a day. I have been on Baclofen since being diagnosed 28 yrs ago Over the yrs I have been on zanflex and klonpen (Spelling not sure) I was even tested for the Baclofen pump but I failed the test.

I read about the magnesium and my hubby bought some and then I read it gives you the poops. At the tine I was having enough problems with the bowels. Maybe I will try it now.

I gave up on Ms doctors since every dr told me that they had nothing to help me I am SP My GP dr gives me the script for the Baclofen.

Right now my left leg started tucking itself under the right leg like yoga style I can not get it out until hubby comes in the room and pulls it out Most of the time it works but a lot of times it goes back under.

Ms is such a pain but I live with it and keep on going.

Shoo

[SNOOPY]

Hello Shoo, it's really nice to see you back posting again

I read about the magnesium and my hubby bought some and then I read it gives you the poops. At the tine I was having enough problems with the bowels.

Read your labels You do not want Magnesium Oxide . This is the one that gave you the poops. It's great if someone has a problem with constipation and is given as part of the protocol to get a patient ready for a colonoscopy.

[Shoo]

Snoopy I don't know what kind of Magnesium hubby bought he might of thrown it out. once I told him the side effects of poops he said you are not taking it

I'm happy to be back Snoopy so much has changed. I used to read the boards but never registered until a couple weeks ago.

Snoopy I am happy to see your MS hasn't progressed to much You had MS a year before me

Shoo

[Sharebeaer]

Hi Shoo, what does your doctor say about your spasms? I get pretty bad spasms as well and I am taking Baclofen, keppra and flexeril for them. Also magnesium each day.

I hope that you get some relief from the pain.

I have very strong muscle spasms in my lower limbs, rib cage (MS hug) and now my arms. I also take Baclofen, zenaflex, and high dose magnesium. I am also starting cannabis oil. It is legal in my country.
Shoo I truly hope you can find some relief...
Share

[Sharebeaer]

Tia1 and Tawanda thank you for answering my post,

I take 80 to 100 mgs of Baclofen a day. I have been on Baclofen since being diagnosed 28 yrs ago Over the yrs I have been on zanflex and klonpen (Spelling not sure) I was even tested for the Baclofen pump but I failed the test.

I read about the magnesium and my hubby bought some and then I read it gives you the poops. At the tine I was having enough problems with the bowels. Maybe I will try it now.

I gave up on Ms doctors since every dr told me that they had nothing to help me I am SP My GP dr gives me the script for the Baclofen.

Right now my left leg started tucking itself under the right leg like yoga style I can not get it out until hubby comes in the room and pulls it out Most of the time it works but a lot of times it goes back under.

Ms is such a pain but I live with it and keep on going.

Shoo

{{{ Shoo }}} I too am SPMS and it sucks, plain and simple. I truly understand about your leg getting stuck. My hubby has to help me unfold mine. Its such a fine line when it comes to taking something that might work such as magnesium and then having issues with bowels and the magnesium causing further issues..I fully understand that as well... just know we are all here for each other. MS is so individual but we all share the same fight...a cure or at least better treatment options especially for SPMS...which there are none.

[Shoo]

Sharebeaer Your leg gets stuck to. Just this morning I woke up and the darn left leg was stuck and it hurts so bad probably some time today it will get stuck again and its just the left lrg. If I sleep on my right side at night it usually doesn't happen it just spasms till I fall asleep Such a pain.

In our state just yesterday our governor signed the bill to approve medical marijuana. It is going to take another two yrs before they start dispensing it I am going to try it but who know show bad my spams will be in two yrs I sure hope it works

Shoo

[Sharebeaer]

Sharebeaer Your leg gets stuck to. Just this morning I woke up and the darn left leg was stuck and it hurts so bad probably some time today it will get stuck again and its just the left lrg. If I sleep on my right side at night it usually doesn't happen it just spasms till I fall asleep Such a pain.

In our state just yesterday our governor signed the bill to approve medical marijuana. It is going to take another two yrs before they start dispensing it I am going to try it but who know show bad my spams will be in two yrs I sure hope it works

Shoo

Hi Shoo
I sent a fax to my doctor with the cannabis oil request form. It is legal in my province/ country. I am desperate to try something that will work. I know taking a few puffs of a regular joint does calm my spasms immediately but I dont want to smoke anything. I also want a product low in THC the hallucinogenic component of pot and moderate to high in the CBD medical component.

I cannot get up from a sitting position with out my legs going into spasms. If I sit too long they go into spasms. At night they dance all night long....my poor hubby call it the chicken leg dance...
ughhhhhhh....

[Shoo]

Hi Share

I like what your hubby calls it the chicken dance I started laughing My hubby and I haven't slept together for a long time cause of the spasms

The bill they passed here for marijuana there is so many loop holes drs here have to take a four hour course and most drs aren't willing to do that A lot of the other states are different where you can smoke the pot but not here it is just the oil and some other forms so we will see what happens in two yrs,

I hope you and I find some relief soon

Shoo